Life; Paralyzed

Quality Vs. Quantity

2011-12-18T21:26:00.000-05:00

(Christina originally wrote this post on April 19, 2011)

I've been doing a lot of thinking lately, about life, and how one might define the overall quality, of his/her life. "Quality of life," means different things, to different people, and not everyone can agree. Each individual has their own tolerance for coping, with the demands, of his/her life. What might satisfy one person, may not satisfy another. Contrarily, what might seem unbearable to some, might seem reasonable to others. Most people will agree, that it is quality, that is more important than quantity, but how do we define "a quality life?" It's a very complex, personal, evaluation process, that each human being, ought to be able to determine, for himself/herself, based on careful, purposeful introspection. There are many factors that impact one's quality of life, that need to be (or should be) carefully weighed, and considered. It's not easy, but it's something I highly suggest, that everyone do, at some point, in their adult life. It's best to think about what type of life you want to live, and prepare for life's unexpected twists, and turns.

At the time of my accident, I was twenty-four, happy and healthy. I was in the prime of my life. I had a career I loved, a man I loved, a full social life, my health (with the exception of having IBS), a loving family, & a place of my own. I was living a carefree, independent life. Never in a million years, did I imagine I'd ever be gravely ill, or incapacitated. Up until that point, I had never been hospitalized overnight. I had never broken a bone. My worst accident had been splitting my lip open, when I was four. I had been walking, and drinking water, out of a mug, at night, and tripped over some shoes, and cut my lip, on the edge of the bed. I got four stitches, as a result, and other than getting my wisdom teeth surgically removed, during college, it had been my most traumatic, bodily damage, or medical procedure needed. I was a total wuss, when it came to any type of sports, and had no interest, or inclination to do, or play most any out door activity, besides hiking, swimming, and riding a bike. I hated heights, and wasn't into any thrill seeking activities, like bungie jumping, parasailing, hand gliding, mountain climbing, or riding motorcycles. My favorite past times included, going dancing, playing video games, painting, and watching anime; not exactly "X-games" material.

Up until the moment of my accident, I never really gave any serious thought, to what my definition of a quality life was. Looking back, I wish I had. Obviously, in hind sight, I'd wish I just never jumped into that damn pool. That said, even if I never dove into the pool that night, there's no saying I couldn't have gotten injured, or fallen ill, like so many people I've seen, and met, over these past six (almost) years. My spinal cord injury, opened my eyes to the fragility of our bodies, and how little control we have over our lives, and our health. In rehab, I met dozens of people with similar injuries. Everyone's story was unique. I've met people who were completely paralyzed due to freak falls, car accidents, motorcycle accidents, diving accidents, bicycle accidents, sports, work related accidents, horseplay, & gun shot wounds. I've also met young people who were totally (seemingly) healthy, that all of a sudden came down with degenerative diseases, like MS, ALS, and Gian Berret. In the nursing home, I literally watched people go from walking, to being in a vegetative state, to dead. You can't always control the course of your life, despite all the best planning in the world, but you can put in writing, the type of life you want to lead, and what you do, and don't consider to be "quality."

I wish I would've had a living will, or advanced directive, when I was injured. There is no way of knowing, what my future might've have been, if I never dove into that pool, that night. I could've potentially ended up disabled, a million other ways. I could have, however, prevented the last six years of suffering, if I had given serious thought to what I considered to be quality, and to what end, I wanted life saving measures made, in the event I was injured, or incapacitated. I wish I had been more informed, about things like advanced directives, and that I would've taken steps to create one. I also wish I would've better understood, and accepted the gravity of my situation, when it first happened. I was in denial for at least the first year, thinking that my will, would be strong enough to cure me. My ignorance has caused me a lot of suffering. That is why I think it's important to share my story, in hopes of educated the general public; both to the need for cure research, but also to encourage people to think about their own standards, and definition of a quality life, and to put those wishes down in writing, just in case.

Because I didn't think things through before hand, or have a living will, I created a very difficult life for myself (unintentionally), by having to live within the confines of paralysis. Living with paralysis (at my level-C4/C5 complete) means I have very few options. In order to stay alive, I HAVE to take medications, accept help from others (for EVERYTHING), and tolerate unbearable (to me) treatments, like having an indwelling catheter, and bowel program. I HAVE to do all of those things, just to survive. That doesn't include coping with the loss of freedom, lack of privacy, loss of sensation, loss of dreams, aspirations and having to deal with constant compromise. It also doesn't account for the physical pain, discomfort, and sickness, that comes along with living with paralysis, and ultimately autonomic dysreflexia.

I have come to a point in my own life, where I'm struggling with the question "is this life worth living for ME, or am I just prolonging my own suffering?" I think it's a very valid, important question, that many people will have to face, at some point in their life. In terms of quantifying the quality of one's life I think there are five key factors. When I think about quality of life, I think first & foremost about the ability to care for one's self. If a person has that, he/she already has a million reasons to fight, to stay alive. Being able to be self sufficient allows for endless possibilities, in terms of things he/she can do, places he/she can go, things he/she can still experience. The amount of available options out there, for people to "regain" lost abilities, and or sensation, is a blessing and decreases with every level, further up the spinal column. When you think about person like me, that has no alternatives, to replace or substitute most of what I've lost, it is all the more harder to face.

The second aspect of life I look at, when determining quality of life, is physical suffering. My best friend just lost her mom to lung cancer. When they diagnosed her, she was already in stage four. She spent the last six months of her life, in misery, doing chemotherapy and treatments, that didn't help a bit. Instead, they made her physically ill, and weak. It became increasingly hard for her to want to go through with the treatments, because the treatments themselves were like torture, and only contributed suffering. Physical suffering and illness, have a huge impact on overall mood, and the ability to find happiness. If someone is in constant pain, or physical distress, or discomfort, it is incredibly hard to focus on much else, and there comes a point, where the scale tips, to being not worth living.

I think the third important component to quality of life, is having loving, meaningful relationships with other people. Having a strong support network of family, and friends, definitely contributes to overall satisfaction with one's life. If someone feels loved, and wanted, it gives them purpose, and motivation to return that love, and friendship. Friends and family, offer moral support, an ear to listen, and a shoulder to cry on. Having quality care givers, that you can trust, and feel safe with, also helps provide security and helps to maintain physical wellbeing as much as possible, given each particular situation. Often loved one's play the part of caregiver, and their vested interest and love, in the individual with needs' life, ensures a higher standard of life.

The fourth factor, in determining quality of life (or potential to improve), would be having a passion for something you do, that brings meaning and purpose to your life, and contributes to society. Having a job, volunteering, going to school, or even hobbies, provide distraction, as well as boost feelings of self worth. Feeling needed is important. Having an inner drive, or motivation, to complete a task, or goal, can provide reasons to want to keep living. Teaching art, has always been my passion. I miss my classroom, and my kids terribly. Having such a physical based passion, has made it hard finding satisfaction, in just having a very limited amount of ways I can still do what I love. I have been able to continue to teach others, by creating artwork by my mouth. It has provided me with an outlet for one aspect of my old life, but there are countless things that I can no longer do. Words and writing, have also served as a means of expression, and tool for educating, but I miss being able to demonstrate and do so much, and the things I can still do, are often not enough to satisfy my needs.

Last, in terms of quality of life, and overall happiness, I think of superficial things, like looks, and material possessions. Self esteem, and self image are important factors in a person's life. People often become sad, or depressed when they don't fit, their ideal image, for themselves, or when having to cope with drastic physical change. My body has changed immensely, due to my spinal cord injury, and there is very little I can do to change that. Before my accident I was very sensitive about my looks, and about my weight. I watched my diet carefully, and exercised. I always did my hair, shaved, put on make up, wore jewelry, got my nails done, wore nice clothes, and used perfume. I had even planned to get cosmetic surgery (my procedure was scheduled for 6/27/05- my accident was 6/5/05), because of my insecurities, and my quest to be the ideal version of myself.

Now, the overwhelming majority of my body is flabby. I have no way to exercise, or tone most of my muscles. I have many scars from all the surgeries done to my neck, and for the suprapubic catheter I have. I can't groom, or dress myself, in any way. I rely on others, for everything, and although my caregivers help me, some things are embarrassing, or awkward to ask for and accept help for (like shaving, going to bathroom, brushing my teeth, cleaning my ears, clipping my toe nails, blowing my nose, dealing with acne and dealing with my period), or just never turn out the way it would, if I were doing it for myself (like feeding myself, putting on makeup, and fixing my hair). It has been very hard, getting used to living in a body, I no longer feel, or recognize.

It has not been easy, to look at myself in the mirror, or go out in public. I'm constantly comparing myself, to my old self, and to my peers. Going out in my wheelchair, is especially difficult, not only because of the attention the chair draws to me, but the fact that other people witness me, needing help, being dressed, groomed, and fed. I often feel like some sort of bizarre spectacle, and I find it extremely hard to relax, or enjoy my surroundings. Going out, also always triggers bombardment of memories, which inevitably bring bittersweet joy, and pain.

As far as money, and material possessions go, they are necessary, and can help, in improving quality of life, to a certain degree. Having the money for adaptive equipment, and technology, can open up more possibilities, and widen a person's variety, of things that he/she can do, and can provide a higher degree of independence (which is crucial). Having special equipment, and accessibility, also makes it easier and for more efficient care giving. For example, having a Hoyer lift, makes transferring me, in and out of bed, much, much easier, and safer for me and my caregivers, than my caregivers having to manually lift, or carry me. Having a wheelchair accessible vehicle, offers me the freedom to travel, and go out, much more easily and frequently than having to rely on medical transport services, public transportation, or being transferred in and out of cars manually. Having the resources to make one's living environment as accessible as possible, provide quality (necessary) medical care and having a wide variety of activities, and things to do, all play a role in helping improve overall quality of life.

It's hard for my loved ones to accept, but I feel like my life has come to a point where just living, equates to physical, and emotional suffering. I have very few options available to improve my quality of life. I can't care for myself. The things I CAN do are very limited, and EVERY aspect of my new life involves change, and/or compromise. I have a lot of physical pain, and discomfort, much of which there is nothing that can be done to change it. My IBS makes having a bowel regime difficult. Having a bowel program is both mentally, and physically taxing. Right now, I have BP every other morning. Before my accident, I went "number two" at least once, or twice a day (thanks to my IBS-some days I might've had to go as many as four, or five times, in one day).

Having a nerogenic bowel, and bladder, makes life very difficult. I have to rely on an indwelling catheter, for urine, which keeps me constantly susceptible to infection. The BP requires I take seven pills (2 stool softener & 5 fiber), each day, plus watching my diet. It is extremely embarrassing, degrading, and invasive, and has never gotten easier to cope with. It involves me sitting on a commode, and a nurse has to give me a supository. The nurse has then digitally stimulate my body to "go," multiple times, each time having to insert her finger, to verify if my bowel is clean. It takes about two hours, and it's absolutely horrendous. If I don't have a successful BP (don't go enough) I have to worry about having incontinence, and end up having to have BP repeated the next day (which ends up making 3 back, to back BP days-for scheduling purposes).

The whole process is not only an extreme violation of my personal space, it is physically uncomfortable. I get cold sweats, nausea and chills from the stimulation, and have chronic hemmrhoids. I'm convinced my daily chest pressure, and nightly fevers, and dsyreflexic symptoms are because my body wants to go to the bathroom, but can't. I can no longer feel the urge to go, or gas pains, but my body interprets that pain, and creates autonomic dysreflexic symptoms. AD symptoms can get very severe, and can result in stroke, or death. My only "option" besides having a BP, is a colostomy. I refuse to do that. The thought of having another artificial hole cut into me, and a bag of feces strapped to me, is just too difficult to bear. It would only decrease my quality of life, which is already very low, in my opinion.

The only things I have going for me, is the love & support, of my family & friends. I am blessed with amazing friends, that have taken an active role in my life, and have stood by side, through my hospital stays, visited me at the nursing home, and continue to visit me in my home, keep in touch with me, and invite me to do things. My family is supportive, and has helped me in, many, many ways. Their love, and affection, has been my one constant driving force. My family is there to comfort me, help care for me, and continues to make feel loved, and wanted. Besides my love for my family, friends, and pets, I have my art and writing. Both have been an outlet for me to express my feelings, and my pain. Both my art, and writing have given me purpose, to use my talents to teach others about paralysis. They have made me feel like I have something to contribute to society, a method of spending my time, in meaningful way.

Unfortunately, I've been suffering for so long, and my symptoms are only getting worse. There is no cure, or quick fix. When I think about all the factors, and weigh all the variables, that contribute to MY daily life, the negatives vastly outweigh the positives. The room for improvement, to much of my life, is slim, and seemingly inconsequential, when stacked beside the physical and emotion pain, I have to endure every day. At some point, I feel justified in saying I've suffered enough. I feel it's horribly unfair, that I'm forced to live, the way paralysis has forced on ME. I'm not talking about "quadriplegics," I'm talking about Christina Symanski. I'm talking about MY personal losses, disappointments, limitations, and physical pain and discomfort, that MY body presents me with, due to MY unique physiology, and IBS. I can't speak for anyone but myself, in terms of quality of life. I wish there were more answers for me, untapped options, but I know there aren't many, I haven't explored, that are reasonable, or that I'm willing to do (like the colostomy). So then I'm left with the question, "is it really worth living?" Not for everyone else's reasons, or for anyone else, but ME. If not, than I only have but one choice, and that's to stop accepting the treatments that are prolonging my unnatural lifestyle. My only hope, and biggest obstacle, is that my loved one's understand and accept my wishes, and know that my wish is to prevent suffering, because I don't view THIS as a quality life.

Lost Love

2011-12-12T22:16:00.001-05:00

(Christina originally wrote this post on May 1, 2011)

At the time of my accident, I was in a new relationship. Earlier that year (2004) I had broken off a long term relationship, of almost six years. It was a rocky relationship, that should never have lasted as long as it did. The man I had been with was very jealous, and controlling, and I was never truly happy, or myself, during my time with him. We dated all through my college years. Once I finally summoned the courage to leave him, I had wasted a lot of time (for both of us). I was already a full fledged, independent adult, and had begun my teaching career. "Mr. Wrong" and I had moved in together, the previous Spring, in a last ditch effort, to make things work. Living together ended up being the final nail in the coffin. I broke things off with Mr. Wrong in September, 2004, and moved back home with my parents. I felt cramped and suffocating, living back under their roof, especially being single, and having so much new found freedom. It didn't take long for me to meet someone new, that I really liked, and it became apparent that I needed to get a place of my own.

Meeting Jimmy, was a one in a million chance encounter. My best friend Christy had also ended a long term relationship, and decided to move back home with her mother, in York PA. Christy and I were neighbors, growing up, at my mom's house in the Poconos. We remained close friends all throughout high school, and college. I'd often visit her, when seeing my family in PA. One day, shortly after moving to York, she was driving around town, and had stopped at a traffic light, when she noticed the guy in the car next her, trying to get her attention. She rolled down her window, and the man asked her if she knew how to get to a certain street he was looking for. He explained, he was on his way to an audition, and ended up getting lost. Since Christy was new to the area herself, she told him she was sorry, that she couldn't help him.

Shortly after, the light turned green, and they both started driving away. For whatever reason, it dawned on Christy, that this guy was my type, and decided to start flashing her lights at him, getting him to pull over. She then proceeded to ask the man, if he was single, and explained that her best friend was single, and might be interested in meeting him. She whipped out a picture of me, on her cell phone, and asked the guy for his phone number. Amused, and surprised, he gave it to her, and they both drove away. The next thing I knew, I was getting a phone call from Christy, explaining this bizarre encounter, and urging me to give the guy a call. At first, I thought she had completely lost her mind, and was cringing at the fact that she made me look like a complete loser, to a total stranger! I thought, "this guy must think I'm pathetic, if my best friend has to resort to flagging down strangers for a date." Reluctant to give the guy a chance, I agreed we could call him together.

We called, and the guy picked up, sounding very happy, and surprised. He was hanging out with some friends, and seemed like a really fun loving person. I could hear his friends chuckling in the background, probably thinking the whole situation was nuts (I know I was), and made me feel all the more nervous. Nervousness aside, I found it very easy to talk to him, and decided to take a chance, to get to know him. Christy had already been planning to come stay with me in NJ, for the weekend, and we had been planning to make a trip into the city (NYC). There was no way I was going to go on a blind date, solo, so we decided to invite him, to spend the weekend with us. I guess he liked my pictures, and our conversation, because he decided to take the risk, and take us up on our offer.

We spent that week, getting to know one another, via phone conversations, and through email. He was so funny, and easy to talk to. We had a similar sense of humor, and were both into the arts. He was a musician, and I was a painter. We both liked video games, shopping, going out with friends, and similar movies. We really seemed to be hitting it off, and I seriously started to doubt if we'd connect on a physical level. His personality, and sense of humor, seemed too good to be true. I felt like we'd been friends forever. Up until that point in my life, I'd never met a guy as funny, outgoing and down to earth, that I also felt attracted to.

I'd had some nice relationships, to some hot (in my opinion) guys, before Mr. Wrong, but none, where I felt I could completely let my guard down. Most of the guys I dated before Mr. Wrong were conceited about their looks, and took life too seriously, were wishy washy about commitment, or too clingy. I tended to be attracted to the "bad boy" types, and the stereotypical "guidos." Based on my experience, I couldn't help but think Christy had judged wrong, and that there was no way it would turn out being a "love connection." Christy and I have different tastes, in men, in terms of physical appearance, and it just didn't seem possible, that the guy I was talking to would be a match.

We had decided to split a hotel room, between the three of us, for the weekend, since there was no way my parents were going to be ok, with having some random stranger spend the night at their house. I knew it was a risk, but figured Christy and I would be safe, since we were two against one, and he'd be in unfamiliar territory. I had only ever gone on one date, with someone I had met online before, and it had been a total disaster. I had mixed feelings about potentially being "stuck" with someone I just ended up wanting as a friend, for an entire awkward weekend. When Friday came, I was a nervous wreck. Christy and I met at my parent's house, after work, and we headed to the hotel, to meet the mystery man.

Christy and I signed into the hotel, and went up to the room, and waited. He called to let us know he had arrived, and I remember looking out the window, and seeing Jimmy for the first time. He was driving a blue BMW, and I could barely make him out, wearing a bright yellow fleece, as he pulled off the exit ramp, across the highway, and made the U-turn to enter the hotel parking lot. My stomach did a somersault. I was about to meet the awesome person, I'd talked to all week, and it looked like Christy was right! He knocked on the door, and I got butterflies in my stomach. I remember opening the door, and I truly took a double take. I asked myself, "How could this be possible?!" He was EXACTLY my type, in every single way. I was so psyched!

That first night, we hung out for a bit, and then went out to eat. The three of us had a great dinner, full of laughs. He was so down to earth. It was like the three of us were old friends. It never felt awkward, or strained. There were no weird moments, or strange silence. We just talked, and joked around. After dinner, we decided to go out dancing. We went back to the hotel, and got changed. We went to a local club. It was "ladies' night" and they had reggeaton on the bottom floor. Jimmy just went with the flow, and we had a fun evening. He was a bit hesitant, and didn't make any "moves" in a romantic sense. We ended the first night without a kiss. I was starting to worry, if maybe he didn't find me attractive, so I asked Christy to drill him for info.

The next morning, we headed out fairly early, and caught a train into Manhatten. Jimmy had never really been to NYC, so it made the trip that much more exciting. Christy had talked to him, while I was getting ready, and assured me he was "into me." Reassured, I decided to be patient. We decided to hit Times Square, and went to ESPN Zone for lunch. I'd been there before, with my dad, and thought Jimmy would like it. After lunch, we walked around, and then went to Toys'R'Us. We had a lot of fun, poking around the store, taking pictures, and being silly. That night we went back to the club. By this time, I was anxious for him to make a move. He didn't disappoint. We had our first kiss, on the dance floor. It was instant chemistry.

That first Sunday, morning we packed up our stuff, and the three of us hit a fast food taco joint, then hung out for a while in my room, at my parent's place, playing video games, and watching TV. Christy kept her distance, to give us some privacy, but nothing much happened (which I was honestly, a little bummed out about >.<). Later that afternoon, I said goodbye to both of them, feeling a little insecure, about how much Jimmy liked me, but satisfied with our fun filled weekend. Jimmy and I talked all that following week, and he invited me to join him, on a trip with his friend, to Penn State, for another friend's birthday, for the weekend. I agreed. This time, I'd be the one risking a trip out of state, to spend a weekend away.

I was nervous at the thought of it just being me, but also happy that he not only wanted to see me again, but was willing to go away with me, for the whole weekend. The plan was to meet at his parents' house, meet up with his friend, and the three of us would drive up to Penn State, in his car. I brought flowers, knowing I'd be meeting his mom, before we left for Penn State. I wanted to make a good first impression, especially since, I figured his family and friends would be suspicious of how we met, and the fact that we would be spending ANOTHER weekend together, even though we barely knew one another. I think my plan worked. His parents were definitely more gracious than mine, about our relationship.

That second weekend, with his friends was a blast! Sparks flew between the two of us, and it was funny seeing, and hearing his friends' reaction to "us." I learned, to my surprise, that he hadn't had many girlfriends (up until that point). Growing up, the local girls mostly viewed him as a friend, and class clown. I felt lucky, for my good fortune to meet him, and at their loss, for not grabbing him.

The third weekend, after we met, we decided to spend ALONE in NJ. We got a hotel room, for the weekend, since staying at my parents' place wouldn't be comfortable, or appropriate. We went out to eat, a few times, but basically spent most of the weekend snowed in. Neither of us minded. It was a memorable weekend, none the less. From there on, in we were pretty inseparable. I fell for him, fast & hard.

We would talk every night, during the week, anxiously biding our time until the weekend. I remember after about a month of dating, I felt like I couldn't wait the five days. One Wednesday night, I decided to drive up to see him, and ended up commuting to work, from PA the next morning. I was exhausted,but it was worth it. We ended up finding a half way point, in Phillipsburg, NJ, and would meet up there, mid week. It became apparent, very early on, that I had outgrown my room, at my parents'. I needed the privacy, and freedom, of having my own place. I started looking, and making plans to move out, that April. In the meantime, we spent most weekends at his parents' and at my step dad's (in the Poconos).

About two months into our relationship, I felt I knew I wanted to be with, on a serious level, and needed to know if he'd be willing to move to NJ. I had already established my career, and needed to stay living close to my job. Luckily, he agreed, and we planned to move in together in the summer, once I had settled into my new place. Things with us moved fast. I felt SO happy, every second I spent with him. Neither one of us could get enough, of one another. We were in love, and it felt AMAZING. We got along well with one another's friends, and family (for the most part- my parents [dad & stepmom] were a little disapproving of how fast things were moving, but I didn't care). Even in the beginning, it just felt RIGHT. We just fit.

Moving into my apartment was awesome! It was a busy year for me. I had been teaching full-time, taking graduate courses once a week, put on three art shows (for my students), painted a mural (at work), ran yearbook club (with my 5th graders), maintained the long distance relationship with Jimmy, got my bar tending license (for summer work), found an apartment, bought & packed everything I needed for my new place (basically staring from scratch-furniture wise), joined a gym and spent time with family and friends. It was hectic, at times, but I was the happiest I'd ever been. All the pieces of my life were falling neatly into place.

Having a space of my own, was fantastic. I felt so happy, and alive. I couldn't wait for Jimmy to move in. We were both eager to start our new life, living together. It was going to be terrific, getting to come home to him, every day. He had signed up, to take the same bar tending course I had, and we planned to check out, and enroll him in school (IAR- a music/tv production school in the city), later that summer. I had roughly three weeks left, in the school year, and things at work, were finally winding down. I had already lined up my summer job, and we had planned to move his things in officially, in two weeks. I had lined up a surgery (cosmetic procedure) for June 27, 2005. The plan was for Jimmy to move in, the week before my surgery, so he could help me with the recovery. His 23rd birthday was fast approaching (6/6/2005), and June, 2005 was shaping up, to be a busy month, full of new, exciting things. We were blissfully unaware how drastically different our plan would turn out to be.

Saturday, June 4, 2005, started out like any other morning. I awoke, to Jimmy, snuggled up, right next to me (we had been sharing my twin bed-which made for a tight squeeze- we didn't mind). We had thrown an apartment warming party, a few weekends back, and had a TON of extra booze, laying around. Knowing his birthday was approaching, I had picked up a cake, and had invited a group of my friends to stop by and celebrate. We had a late breakfast/early lunch, and lounged around in our PJs. He practiced playing his guitar, while I laid on the futon, breaking in a new Gameboy game, and snuggling up next to my cat, and her new kitten. By the mid afternoon, I hadn't heard from anybody, so I started making phone calls, to confirm our plans.

A few people canceled last minute, and my aunt and uncle, had decided to take my baby cousin, down the shore for the weekend. My other cousin (19 at the time) had been planning to stop by, with her boyfriend, but changed her mind, and decided to take advantage of having an empty house, and decided instead, to throw a party. I was torn, over what to do, about the change in plans. I knew there were going to people at the party, that didn't get along well (someone I saw briefly) with Jimmy, and my best friend Erin, and her boyfriend were still committed to coming over. I felt guilty, because I had recently missed my cousin's birthday party, and asked Jimmy if he wouldn't mind going. He said it was up to me, so I called Erin, to reschedule, and told my cousin we'd be coming.

It was the first hot weekend of the summer season, and I asked my cousin if my uncle had opened the pool, hoping to be able to go swimming. I looked forward to going swimming every summer, and was anxious to take a dip. I thought an evening swim, with Jimmy sounded romantic. I knew there'd be food and drinks, so I asked if we could spend the night. I figured that way, we could both drink, and relax, and not have to worry about having a designated driver, and/or having to drive home super late that night. She agreed, and I went and packed mine, and Jimmy's things. I got changed, and put my bikini on, under a tank top, and skirt, having every intention to go swimming, later that evening.

We were among the first people to arrive, at my cousin's and I noticed that there was only primarily beer to drink. I don't like beer, so Jimmy and I decided to hit a near by liquor store, for some vodka and OJ. When we got back to the house, my cousin was making jello shots, and her boyfriend was prepping food, for the grill. Jimmy fixed me a drink, downstairs, and then we made our way upstairs, to join the rest of the party. At first, we spent time outside, on the deck, me sitting on his lap, playing Gameboy. We played a round, or two of "beer pong," and then head inside, to play card games. By the time we were done playing a few round of cards, it was past midnight, and I was itching to go swimming. I had been taking photos, throughout the night, as usual. It was a habit of mine; wanting to catalog every moment of our time together.

Around 1-2am (my memory is fuzzy) I decided I had waited long enough, and begged Jimmy to come swim with me. He said he wanted to finish up the round of cards, and he'd come join me. I returned the camera to my backpack, and marched out towards the pool. My cousin's boyfriend was busy at the grill, the night time air, filled with smoke from the barbecue, laughter, and music. I passed through the crowd, and made my way over to the pool. It was dimly lit, by the porch light (some twenty feet away) and the glow off the tiki torches. I kicked off my sandals, and dropped my shirt, and skirt, onto the grass. I hesitated, for a moment, deciding if I wanted to take down the ladder, to the pool deck, and opted to boost myself up, onto a storage container, instead. The pool was a large, circular, above ground pool, about five feet deep, with a fencing, going around the back half. The storage container, was a tall, rubber container, about six inches shorter than the pool itself (used to store rafts, and floatation devices), which rested flush against the open side of the pool. I had to turn around, to face the house, and use my arms, to boost my butt, up onto it. Once I was seated on it, I turned around, with my back to the porch, and stepped up, onto the metal ledge of the pool. Without a moments' hesitation, or thought, I dove head first, into the dark water. Within seconds, I heard a large cracking sound, and felt the impact, of my head, hitting the bottom.

I remember opening my eyes, and barely seeing my lifeless limbs, hanging at my sides. I was face down, alone, in the water, and I couldn't move. The thought flashed across my mind, " This is it. This is how I die." Then I heard a huge splash, and the next thing I know, Jimmy is in the water, pulling me out of the pool. The next few minutes, were pure panic, and chaos. I knew I had screwed up, BIG TIME. I was hurt, BADLY. I couldn't feel, or move, most of my body, and the pain radiating from my neck was excruciating. There had been underage drinkers present (including my cousin). Although I didn't provide the alcohol they had been drinking (my cousin's boyfriend had purchased most of it- as far as I know), I WAS the oldest person at the party, and had EVERYTHING to lose, for my lapses in judgement. I should've NEVER jeopardized myself (my reputation, clean legal record and career), by knowingly being around underage drinkers, family or not. Worst still, I should've NEVER dove, into a shallow pool. To this day, I have no logical reason for why I did what I did. I've been asking myself that question, EVERY day, since that day.

Panicked, and in shock, Jimmy, my cousin, her boyfriend, and other party goers rushed to my side. I recall them asking me, over and over, if I could move, what had happened, where I was injured, and if I was in pain. I was terrified. My whole life, was literally crumbling down around me. My mind was racing a million thoughts, per second: "How would I explain this to my parents? What would happen at work? Who would cover for my classes? How badly did I hurt myself? What would happen to my new job, I was supossed to start, that Tuesday? What would my aunt and uncle think? What about Jimmy's birthday? If they call 911, will I and/or my cousin get in trouble?" I heard Jimmy shout for someone, anyone to call 911. Some of my cousin's friends were in a frenzy, fearful to call for help. Someone answered Jimmy, saying "We can't there's underage drinkers here." He retaliated, with fury, "I don't give a F*%@! Just do it!" I could hear the terror in his shaky voice. I could see the fright, and shock, on my cousin's face. The pain in my neck, started to overcome me, as I noticed a blur, of red and blue lights, and heard the sirens. I remember being ashamed, to even give my name, as the EMS workers began frantically loading me into the ambulance. Then, darkness. I had blacked out from the pain.

The next thing I remember, I'm in the ER, and they're cutting away my bikini, asking me a million questions, hooking me up to a million machines. My memories of my three weeks in ICU, are blurry, mixtures of reality, and hallucinations (brought on by high fevers-reaching 106). They are among the worst, most traumatic, horrific, terrifying memories of my entire life. My entire life, flipped upside down, in the matter of seconds. I was no longer in control, of ANYTHING. My life was hanging by a thread, and I powerless to do anything, to help myself. I was totally, and utterly helpless, and terrified of dying, and the future ramifications that my accident would have, on my life, on my relationship with Jimmy, and on my family. I knew it was bad, and could possibly get even worst. Although I didn't want to admit it, to anyone, I knew there might be, no coming back from what I'd done.

From the moment my parents (dad and stepmom) entered the ER, drama ensued. My parents were in shock, and livid. They lashed out, at me, my cousin, my aunt and uncle (who were jerked into the middle of everything), and Jimmy. They berated me, for being so careless, and irresponsible. They couldn't believe I had been so foolish. They guilted me, over and over, about the drinking, and the ugliness, just magnified, as the gravity of my injury, became more apparent. I was never going to walk again. I was going to be completely paralyzed, confined to a wheelchair, and a life of dependence, for the REST of my life. I had thrown my life away, with one stupid mistake. They were furious, about what I had done, and were vicious, treating Jimmy, and my cousin like criminals, for "letting it happen" and "being a part of it." They didn't want him to see me, and used their power, as my next of kin, to force him out, and keep him away from me. They used their promise of help, as leverage, to keep him from being able to talk to me, or see me.

My parents let their grief blind them, with rage. Even though I was on my death bed, and my life hung by a thread (I was intubated, and placed on a vent three times, and had to undergo three major surgeries) they told me I was not allowed to see him, and that I should break things off with him. They blamed him, for everything, from my drinking, to my injury. I had to tell, and retell my story, over and over again, to no avail. They didn't WANT to believe my story. They couldn't accept I was capable, of doing what I did. They felt hurt, and betrayed by my actions, because it placed a tremendous amount of responsibility onto to them, that they felt was unfair. They used the fact that I was going to need their help, to explain my condition to work, shut down apartment, handle my financial responsibilities, sell my car, pack up my things, and the tremendous uncertainty of what kind of care I'd ultimately need, and how to go about initiating, and paying for those services. I had no choice, but to give them Power of Attorney.

They were extremely insensitive to my feelings. They basically kicked Jimmy out, Christy and my mother and sisters (who had traveled from upstate NY and PA) and had no where else to stay, onto the curb, and shut down the apartment, before I even left ICU. They confiscated my cell phone, and camera. They didn't even let Jimmy get his belongings, from the apartment. Jimmy had no choice, but to return to his parent's house, in PA. He was crushed, completely in shock, and devastated. He would drive hours, nearly every day, to try and come see me, only to be turned away, if my parents were present. They threatened me, saying they wouldn't help me, if I continued to see him. They told my mother and sisters, to lie to me, and say he'd left me. They refused.

I was an emotional wreck. I couldn't believe the guilt, and shame they were dumping on me. My stepmom, had even read through my diary, and threw things in my face. My heart was shattered, my soul was trembling. I couldn't believe MY own father, and stepmom were acting this way. I could die, at any moment, and they were busy yelling at me, for drinking, for being stupid, and completely disregarding my feelings towards Jimmy, and the other half of my family. I was crushed. I thought, these people are SUPPOSED to love me, unconditionally. How, and why, was this happening? I hated how they were acting, and how awful they were treating the people I cared about. I felt trapped, between all parties, and felt no matter what I did, I would be in pain.

Despite my parent's unrelenting guilt trips, blame, and shaming, I couldn't bear the thought of losing Jimmy. Every day, I was fighting for my life. I wanting so badly to see him. I wanted to make everything right again. I felt I HAD to get better. I HAD to fix what I'd done. I HAD to somehow redeem myself, in my parent's eyes, and prove my worth. I OWED it to EVERYONE, to get better, and take back control over my life, and start putting things right side up again.

Throughout the four months I spent in ICU, and in the physical rehabilitation facility, I managed to see Jimmy a handful of times. Each time, was filled with bittersweet sorrow, and despair. We were both completely broken. We both felt the weight of the entire world had come crashing down, onto us. We wrestled with feelings of fear, doubt, denial and grief, over what was happening, and couldn't accept the reality that I wasn't going to get better. Neither one of us could understand, the cruel nature, of our misery, and our horrible fate. Why had we met, against such great odds? Why had God shown us such bliss, only to violently, abruptly, tear it away? Nothing made sense anymore. The physical, and emotional pain of coming to grips, with all the change, that had been thrust into our lives, seemed too much for anyone to have to bear. To have my parents, adding fuel to the fire, and purposely creating additional obstacles for us to be together, felt like being punched in the gut. At my weakest, most vulnerable point in my life, the two people I thought I'd be able to lean on, trust, and receive support, completely trampled my spirit.

Once the dust settled, and it was time for me to leave therapy, and begin my new life, in a wheelchair, I ended up being put in a nursing home. After all the pain, tears, and drama, I felt completely abandoned. While I realize it was my fault, for what had happened to me, I never thought my parents would turn their backs on me, the way they did. I felt totally dissolution, and betrayed. I had struggled, and at times pushed away Jimmy, and the rest of my family, because I felt my parents left me with no choice. I had believed they would be the pillars, I could rely on, and in the end, they left me to fend for myself. I felt so hurt. I was especially upset by the fact that I felt I had been backed into a corner, to push Jimmy away, and he was innocent. We loved each other, deeply, and my parents never once, respected the bond we shared, or considered my wants, or needs. To this day, I regret not being able to be stronger, and stand up for myself, and shield Jimmy, and the other half of my family, from my parents cruelty, and insensitivity.

Jimmy and I tried our best to stay together, for six months after my accident, but it ultimately became too much, and we decided to end it. Between, me being stuck in a nursing home, both our lives being flipped upside down, the pressure from my parents, and the sheer sadness of what had happened, we were both zombies. By the time we decided to go our separate ways, I was still trying to absorb the reality, of all the changes to my daily life, and felt completely torn, battered, and numb. I was trying to come to grips with day to day traumas, like having no privacy, losing everything I'd worked for, feeling abandoned, and betrayed by my parents, needing to be fed, clothed, bathed, and being completely dependent, and feeling like I had absolutely NOTHING left. I knew the reality, that I might never get better. I couldn't handle the thought of sentencing Jimmy, to the Hell, that had become my life. Every moment we had spent together, that I was paralyzed, all we could do was cry. Every second killed me. I wanted a better life, than I could give to him, for him. I felt too weak, to handle being together THIS way. I couldn't escape the guilt, of asking, or expecting him to sacrifice a chance at a normal life. I HAD NO options, he did. I couldn't live with the thought of putting him through, even a fraction of what I'd already experienced. I decided to push him, and encourage him, to leave. I loved him too much, to be selfish. I had to let him go, even if it killed me, and that's exactly what I did.

He came to see me, one last time, at the nursing home, shortly before Christmas. Knowing it would be the last time I ever saw him, felt like my heart was being ripped apart. Logically, I knew that this was the right thing to do; that we had so few options; that the cards were stacked insurmountably against us. Never the less, my insides were screaming in pain. I'd already lost my freedom, independence, privacy, my career, and everything else I'd worked for, and now I was losing the one person I loved more than life itself. It was horribly unfair. We kissed, and cried, and said our goodbyes, and as I watched him leave I completely fell apart. I cried, and cried, for what seemed like forever. My heart felt completely shattered. It was the lowest point of my life. I felt like I'd been stripped of absolutely everything. I felt utterly empty. I wallowed in misery for months, barely able to eat, or want to do anything. I immersed myself in the Internet, escaping reality watching videos, writing, and playing video games.

From time to time, I'd torture myself, by looking at Jimmy's Myspace profile, or at old pictures of us. I clung to the hope of being cured. When we parted, I had promised him, if I ever got better, I'd come find him. That fantasy became my motivation, for moving forward, for a very long time. The nights in the nursing home, and periodic hospital stays, were always terrifying. The staff was always short, and I was often helpless, and alone. I would lay in bed, exhausted, but unable to sleep. I'd imagine what we would be doing, if the accident never happened. I'd wonder what he was doing, and if he'd really gotten over me. Significant dates, and holidays would pass, and I'd think about what I SHOULD be doing, and cry, over the reality of what my life had become. It seemed horribly unfair, that I was stuck, longing for him, crying over him, when for all I knew, he had moved on. My heart, and soul, wouldn't let me move on. I still loved him, intensely, and it hurt, just thinking about the life we had, and what could've been. I beat myself up, over and over again.

After a year of living in the nursing home, I knew I had to try and get out. I felt like I was dying, a little more, every day I stayed there. I hated having no control over my schedule, no privacy, never getting any sleep, the relentless invasion of my person space, and the depressing atmosphere. I couldn't relate to most of the people, and to add insult to injury, Mr. Wrong's cousin moved in, and the management decided to put her in my room, of all places. It was the final straw. I had to leave, or I was going to collapse inward, and give up on life.

Initially, the plan was to move in with my two best friends (Erin and Edwin- who were engaged to be married). The more digging I did, about services, and what I'd qualify for, it seemed I might be able to move out on my own. That seemed like the better choice, since I didn't want to be a burden, and I'd have more privacy, and independence. In the end, I found a two bedroom apartment, and moved in with a buddy of mine, Steve. Even though I have no functional movement, the state only allowed me eight hours of home health aide services, per day. Having a roommate was key, because he provided me the security of having someone here, at night, in the event of emergency. It worked out well.

After a year of living together, Steve decided he wanted to leave, to go live with his girlfriend. I totally understood, and wished him well. The roommate I had lined up to move in next, bailed out, at the last minute, so I called on family to help me out. My mom and sister ended up leaving upstate NY, and came to stay with me. Having family around me was a nice change. I could rely on them for a lot more, and it gave me more freedom to do things my way. By this time, it was 2008, and things with my parents (dad & stepmom) had also cooled down. I had forgiven them, for everything that happened the first year after my accident, and we had moved passed the tension, and constant drama. They visited on a weekly basis, and everything was back to as "normal" as possible, given my condition.

In October 2008, I was in the midst of suing my aunt and uncle's home owner's insurance, and the company that installed the pool. It was a tough decision, that I had made, way back in 2006, owing to the fact that my family had cut ties with me, and that the placement of the storage container, coupled with the lack of fencing (around the entire perimeter- not just the back half), were contributing factors in my injury, and relentless pressuring from my parents. Looking back, it's a decision I regret. Anyway, the whole process moved exceeding slow, and it wasn't until this time that I had to give an official deposition, and sit face, to face, with the prosecution's lawyers. It was during this time, that it became necessary, for my lawyer to track down Jimmy, and get his statement, for his "side of the story." Just knowing that he'd be dragged back into the mess, and forced to relive the memories, of that day, stirred up a lot of pain, and emotion for me. I wished he, and my family, could somehow be left alone. I felt guilty enough already, and I hated the thought of reopening old wounds, for everyone.

After speaking with my lawyer, Jimmy called Christy, saying he wanted to get in touch with me. At first, I was extremely hesitant. I had found out sometime before this point, that he was in a serious relationship. My own masochistic tendency, of periodically spying on his Myspace and Facebook, had bit me in the ass, when I saw he had changed his status from "single," to "in a relationship." It's not that I naively thought he wasn't sleeping with other women, but I had been holding out hope (up until that point) that any of his flings, would be just that; meaningless, temporary affairs. Seeing the words "in a relationship" felt like someone driving a stake through my heart, because it meant he had found someone he cared about, enough to openly commit too. Knowing he was "in a relationship" meant he had officially moved on, and was over me. Just knowing that he loved someone else sucked the life out of me. If he loved someone else, then there was no hope left for us, to ever be together again. The thought of a future without him, seemed empty, and meaningless. What was the point of trying, if we'd never be together again? I felt like all the thoughts I had been suppressing floated back, up to the surface, and I felt the intense pain, of when he first left, and I was newly injured. As much as I wanted to hear his voice again, I didn't think I'd be able to handle being "just friends."

I struggled with myself, feeling selfish, for not being to be happy, that he had a normal life (what I said, and thought I wanted). For so long, I had the momentum of believing there was a chance, I might be cured. By 2008, I had little hope left of being cured, and the reality of Jimmy loving someone else, completely deflated the remaining wind, that had been moving my figurative sails forward. I wrestled with my deep desire to have contact with him, against the stark reality, that he had moved on. It made the thought of talking to him, unbearable, but I agreed to, out of feeling that after all we'd been through, I owed him at least one chance to talk again. I felt at the very least, I wanted to verify that he was happy, and that my sacrifice had been worth it, and also to apologize, for everything; for the accident, for not standing up to my parents, and for how I had treated him, those first few weeks, in ICU.

I told Christy she had permission, to give him my number, and braced myself for his call. When I heard his voice again, for the first time, in almost three years, I burst into tears. I tried to keep my composure, and hide it. I know at first, I might have seemed cold. I wanted to know what his intensions were, and let him know how I felt about him. I didn't want to guilt, or hurt him, but I needed him to know, that even though he had moved on, I hadn't. We reminisced, and shared a few tears, but I tried very hard, not to let my guard down, or get wrapped up in the moment. He was with someone new. Reminiscing about old times, or even the fact that he said he still cared for me, didn't mean he was "in love" with me, or change the fact that I was still very much injured, and he was with someone else.

I tried my best to remain friends for about two years, and even let him come visit me, once. During the two years (10/2008-9/2010) we talked, he was forever sending mixed messages. My hopes fell, and crashed, like waves, hitting the shore, and I became a mental wreck. I wanted him to get to know me again, and see the realities of my life, while at the same time, I needed to hear him say the words, that we "definitely had no future." I needed to know, if "getting better" meant the only way we could ever be together. For months he skirted the issue, and I tried being patient. On one hand, he wanted me in his life, on the other hand, he was committed to someone else.

I knew it was unrealistic of me, to expect him to dump his girlfriend, drop everything, and pick up where we had left off. On the other hand, "just being friends" and knowing he was with someone else, felt like torture. I told him I was sorry, that my life was different, that my heart was stuck, in limbo. I didn't have as many options as he had. No matter how hard I tried, I couldn't handle being just friends. I wasn't able to open myself up, to anyone else, because I felt my heart was with him. I felt like, even if there was a .01% chance that I might get better again, I'd drop everything, and want to be with him. Knowing that, I felt it was unfair, to "use" someone else, just to "pass the time," or to avoid the pain of being alone.

I let him come visit, in a desperate attempt to give us both answers. The visit was cold, and awkward, and extremely painful for me. I felt like perhaps he needed a jolt of reality, to see that I wasn't getting better. I needed him to see my life, and me, for what it was, in the present, and not for the idealistic memories we shared, or for a future that most likely, would never happen. Ultimately, I told him, that he needed to accept the fact (while forcing myself to do the same) that I wasn't going to get better, and that staying on the fence, by not letting me go,was unfair to me, to him, and to his girlfriend. I told him, it was too painful for me to be his friend, especially while he was with someone else and wished him a happy life, and goodbye (again).

Lately I've been struggling a lot, with finding reason to keep trying. I'm tired of feeling sick, of all the medicine, and the humiliating, degrading treatments I have to endure, day in, and day out. I'm praying, and begging God, to cure me, or take me. I've been wrestling myself, with thoughts of wanting to give in, and stop trying. I feel ready to leave this life. The other night, I asked God to send me a sign; something I'd understand, to help me decide what I should do. The next day, I get a message, from Jimmy, saying he's left his girlfriend, decided he "needs to be single" and wants to be in my life.

I couldn't believe my eyes. What were the chances, that I'd ask for a sign, and Jimmy just happened to pop back up, into my life? I told him to give me a call, and we talked. He told me that he realized he still loved me, and felt he needed to be single; that he wanted to focus on his music, but also hoped he could be a part of my life. He asked if he could come see me, and I explained that'd I'd been very down, and considering refusing treatment, and that he'd been in my thoughts; that I'd been wanting to see him, one last time. Obviously, he was upset to hear my suffering, and expressed his wish to be able to help improve my life, enough to keep wanting to live. We made plans for him to visit the following Tuesday.
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Here's what I wrote, in my journal, after our visit:

"It was so good seeing Jimmy yesterday. We cried & laughed a lot. We reminisced about old times. We have so many happy memories. We both feel although our time together was short, those months together were the best, happiest memories of both our lives. We both feel strongly, that we were meant to be together, and so, so sad that this happened to me (and us). We both feel like a huge chunk of ourselves died that day, and that we'll never be the people we were before. We both terribly miss what we had, and desperately wish we could have a normal life together. We both feel a tremendous amount of pain, anger, and sadness, over the future (and life we both believe we would have had) that was robbed from us, by my accident.

He apologized over, and over, for leaving me, and not being able to be stronger, and for breaking my heart, by being with his ex-girlfriend. He said, he only ever had a "plan" for us, and was just fooling himself, trying to live a " normal" life by being with her. He said it wasn't fair to her either, because his thoughts were always of me. He said he gave me his everything, and feels he has nothing left, to give anyone else; that I'm his everything. He said he's tired of trying to be something he's not, and it's not fair to be with other people, when he knows his heart isn't in it 100%, like it was, with me. He said he loves me so much, and can't bear the thought of losing me. He held me in his arms, and it felt SO good. I just wanted to stay in his embrace forever.

For so long, I've felt like I was crazy, for still loving him, as intensely as I do; for thinking of him, as often as I do, and for not be able to let go, or move on, despite the fact that he left, and even the fact he was with His ex-girlfriend, for so long. I've been so heartbroken, and in so much pain, thinking my feelings were one sided. I've never for a moment, thought I could ever feel the way I do about him, for anyone else. I've never tried opening up my heart to anyone else, because I truly love him. I can't explain it, but I feel like we were SUPPOSED to be together. There hasn't been one single day, in these past six years, that I haven't thought about him. I feel connected him, and I have no logical explanation, other than I feel like he is my soulmate. I can't understand why we met, and got to experience such joy, only to be ripped apart. I can't help but wonder if God has a reason, or if it's just horrible bad luck.

While part of me wants desperately to be with him, I understand his hesitation, better than anyone. I believe he loves me. I believe part of him wants to be with me too. We can't help but compare what we had, to what we have now, and it HURTS. As much happiness, and peace, as being together gives us, it brings with it, a tremendous amount of PAIN, because we are confronted by the realities of my limitations, and how they effect the things we WANT to do. I want so badly to be able to jump into his arms, and wrap myself around him, and never let him go. We wish we could lay in bed, like we used to, with his arm around me, and my leg draped across his body, and enjoy the FEEL of each other's touch, and the warmth of our skin. We miss being able to DO the things we used to do, GO to the places we used to go, BE the couple we WERE. Every second we are together it's HARD because it's a reminder of the perfect life we had, and we can't help but want that IDEAL life. Every second we are confronted with urges, that we can't act on, because I PHYSICALLY can't. It's like there's a wall between us, that neither of us have the power to tear down. It keeps us separated, even though we wish we could be together.

My disability makes being together, in an intimate way, seem WRONG, and AWKWARD, and it's not because he doesn't love me, or think I'm beautiful. I just feel like a stranger, in a foreign body. I feel trapped, and ashamed, by disability. It makes it hard for me to let my guard down, or let him in, in the ways I wish I could. I'm sure it is for those same reasons that he feels the need to hold back, or be hesitant. My disability is like a barrier, that makes of both sad, and uncomfortable to try to be together, in a normal sense, because the reality of the matter is, that my life is NOT normal. The way my body is, and the way I'm forced to live is painful, both to live through, and to witness. We both know that there is nothing "technically" stopping us from being together, but feel like THIS life (with me being paralyzed) makes every moment bittersweet. Yes, we could "do things differently," or try and sugar coat things, with compromise, but deep down, we're both hurting inside, because everything we have to "do differently," only serves to further highlight what we can no longer do, and what we're missing.

The selfish part of me, wants him here, by side, despite the constant reminders, and the inevitable comparisons, that we'll both face. There's no escaping the limitations we face, or the memories we share. We both feel grateful to have experienced the happiness we once had, but it will always overshadow the present. I will always feel the guilt, of feeling like a burden, or like my disability is holding him back. He never says it, but it is the truth. My paralysis holds ME back, and prevents ME from being everything I WANT to be, and from doing everything I WANT to do. It prevents me from being the girlfriend I want to be, wife I want be, and mother I want to be. I want to be able to GIVE him so much MORE. I feel like we BOTH deserve, and want a "normal" life, and don't blame either of us, for finding it hard to accept THIS life, or for wanting better for ourselves.

Being with me, as a boyfriend, or a husband, would require sacrifice; sacrifices I wish I didn't have to make myself, but that paralysis offers me NO CHOICE. I couldn't show him normal affection, I can't even return his hugs. We couldn't have a normal sex life. We are both very physical people, and very much enjoyed the feel of one another, and being physically intimate. It hurts, NOT being able to share that, with one another, and let's be honest, physical intimacy is EXACTLY the distinguishing factor, between lovers and friends. We ARE friends, but we want to be lovers. We want it ALL. Going through the motions, is awkward, and doesn't FEEL real, because I quite literally CAN'T feel, or even participate. I wish I could be a normal girlfriend, or wife, but I can't. My body won't let me do what I want.

My life is ruled by the whims of my body. I'm constantly sick. I have the awkwardness of the catheter to contend with, on top of bowel program, which makes every other day Hell on earth. I have constant fear, and anxiety, over my lack of control, over my bodily functions, and the embarrassment, and shame that comes along, with never knowing if I'll have an accident, or not. It's disturbing, and disgusting. The unpredictability makes it hard for me to ever feel relaxed. My near constant dysreflexic symptoms (fevers, chest pain, cold sweats & chills) have made my life miserable. I'm always feeling sick, or uncomfortable, and most days I'm bed bound. What kind of life is that, for Jimmy? It's painful going out, for both of us, because of all the reminders. We're surrounded by normal people, with normal families, doing normal things; it sucks, and it hurts. Most days I'm not even well enough, to be able to go out. That's not fair to him, or anyone else. I feel like it's horrible enough that I'm forced to deal with all the things I have to endure. It wouldn't be right, or fair of me, to expect him (or anyone) to willingly go through this, day after day.

If he decided he wanted to try, I would, because I do love him, and want to be with him. I have nothing to lose. I feel like I'm running on vapors, and I'd love to spend whatever time I have left, with him at my side, but I'll settle for whatever amount of time he's willing to give me. I couldn't bear the pain, of thinking he loved his ex-girlfriend, and no longer loved me. Now that he's no longer with her, I can tolerate it. I'm not naive, and I know being "single" means he's free to be with other women. He's made no commitment to me, and I wouldn't ask it of him, but as long as I don't know about that stuff, and he says he loves me, I don't care, because I don't feel it's right to expect him to sacrifice normal desires for me. I want to have sex, and do normal things, but I can't. If I could, I would. I don't want to rob him of anything, the way paralysis has stolen from me. He has a choice, and I envy it. I respect it. I wish I had a healthy body, and more choices. I never want to take any opportunity away from him, because I love him, and want better for him, just as I do for myself.

I know it might seem selfish of him, to want to be in my life, but not commit to me, despite the fact he says he loves me. I understand his reasons, because I feel his mixed feelings, pain, and confusion myself. We are both torn between what the lives we have, and the lives we want. Although I love him, more than anything, the pain and suffering, of my life, is becoming unbearable, and I don't know how much longer I can hold on. I know losing me with hurt him, tremendously (just as it will many of my friends & family). It kills me, just thinking about the pain my death will cause the people I love, especially if I "choose" to leave my loved ones behind, by refusing treatment. I wrestle with the thought of hurting the people I love, versus the pain and suffering I experience every day. Every day, I try to put myself second, and prevent hurting the people I love, even though I'm exhausted, and dying inside. I want so badly, to be free of this prison, called paralysis.

I'm tired of feeling sick, and enduring awful treatments. I'm tired of feeling deprived, and sick of seeing happiness, and what I want, all around me. I'm terribly sad, over what I've lost, and am not satisfied with what I have left, and my limitations. This life has been torture. I wish Jimmy (and some of my loved ones) could see a few days in my life; witness everything. I think that might help him (them) understand the magnitude of my suffering, and all that I MUST go through, just to "live" this way. Maybe, if he (they) could see the gory, humiliating, pathetic, existence I'm forced to live, he'd (they'd) find a measure of peace, and understanding for why I want to die. Maybe he (they) could let me go, without so much pain, and without such a heavy heart.

Ultimately, my greatest wish, and prayer to God, is that I be freed from THIS life (whether by death, or miraculous cure). My hope is that there is a heaven, and that my separation from my loved ones will only be temporary. If I could be with Jimmy, the way things were before, that alone, would be heaven for me."

Message to My Friends

2011-12-11T17:05:00.001-05:00

I'd like to take this opportunity to address all of my friends (hopefully my family already knows how much I appreciate & love them). I have been so blessed, to have so many wonderful, supportive people in the life. Unlike so many other people I witnessed (during my time living in the nursing facility) in similar situations, my friends have been there for me from day one of my injury and have stayed by my side throughout my struggles; during good and bad times. My friends have amazed me; always going the extra mile. I'm so thankful to have had such a large group of people that have rallied to help me, spent time with me, lent their shoulders to cry on and continually took an interest in my life and offered me love and support.

Thank you so much for being there for me, and helping to motivate me, inspire me and for giving me the strength to endure living with paralysis for as long as I have. I would not have accomplished half of what I've been able to do since my accident, if it was not for the extra support of my friends. I wish I could've endured this life a bit longer, but I am thoroughly exhausted (mentally & physically). Just know that I have appreciated every single visit, every word of encouragement and the generosity that you have all shown me.

Please know that my decision to leave this life behind was not made rashly, or without careful consideration and concern for the people I'm leaving behind. I have been fighting an uphill battle to live, every day since my accident. A big part of my died back on June 5, 2005 and my life was never the same. Everything has felt empty, and bittersweet. Every memory tainted with sadness, over everything that I've lost, everything I miss doing, and everything I had planned to do, and hoped to be.

My paralysis robbed me of the most basic human necessities (freedom, privacy, independence, and physical intimacy). It has been tremendously difficult, being forced into accepting help; needing to be washed, clothed and fed like an infant. I have had to endure horrible treatments and artificial, unnatural means of life support (through medicine, catheters & bowel program). My body is exhausted and most days I'm sick, uncomfortable (chills, cold sweats, fevers) and in pain (chest pains & nerve pain). I did my best, to seek out doctors, specialists, therapists and tried countless medications and treatments. Unfortunately, there is no cure for me. There aren't many options or relief. Life itself has become torture. I have felt like a prisoner within my own body. I'm tired of suffering. I'm tired of fighting to live, only be sick and miserable. This is not a quality life for me.

I never wanted to disappoint, or hurt my loved ones, but I have reached my limit. I have tried my hardest for six long, painful years and now I just want to rest in peace. I hope my book will help people understand me better, and open people's eyes and minds to what things matter most in life. I hope it helps to broaden people's perceptions on right to die issues and the importance of quality of life. I leave this life with the comfort of knowing I will be surrounded by those closest to me. I leave behind my friends and family with a heavy heart, but feel I'm ready to embrace death and hopefully move on to a better, peaceful place. I hope my book can bring comfort and closure to those closest to me & serve to continue to help others once I'm gone.

Again, thank you all for your love, support & friendship.
Love always, Christina

Blog Hiatus

2011-09-13T01:01:00.002-04:00

I'm sure many of my blog readers have been wondering why I haven't posted any new blogs in over a month. It is because I was busy focusing my energy of finishing my autobiography. It is a project I started shortly after my accident, but kept hitting mental roadblocks and perpetually procrastinated on getting it done.

One of the biggest obstacles was my physical limitations and not being patient enough to work with dictation software. When I still lived at Cheshire I was limited to pecking away on my keyboard with my mouth-stick. I was a lighting fast typer when I could use my hands (never had to look at the keys) and can type surprising fast with my mouth-stick. The task just became tedious. A couple of the other residents highly recommended I buy the dictation software, "Dragon Naturally Speaking" and many of them used it regularly. I felt foolish speaking to the computer, and hated the fact I never had privacy and would have inevitably be overheard by roommates. At that point I decided against wasting the money, and kept on pecking away at the project.

For whatever reason, I only ever seemed to get the first thirty or so pages written. I kept hitting mental roadblocks whenever I tried recalling my time at Kessler. Honestly, I think I was so stressed out by the immediate issues, of being sleep deprived, stuck in a nursing home and dealing with the high stress level of each day, that I couldn't delve into the haunting memories and difficult experiences of my stay at Kessler. If anything, I wanted to run far away from those memories and much preferred to escape my miserable reality, through reading books, watching anime, spending time with friends and vegging out on video games.

After a while, I just stopped trying. I put the project on the back burner and focused my writing on current, day to day things. I used my MySpace blog as an outlet to vent my daily frustrations and every day struggles. When things became unbearable, and I hit my breaking point I switched gears and focused all my time and energy on getting myself out of Cheshire and into my own place. It took six long months of relentless researching, planning, pleading and begging, but I did it.

Once I was home I tried a few times to pick the book project up again, but would constantly spend all my time re-reading and re-editing; never making progress. I started focusing a lot of energy into painting, instead of writing and worked hard to build up a body of work worth exhibiting. I wrote about my artwork, as the book started to collect virtual dust, again. I was limited to the time I was able to be up in my chair, so I had to prioritize how best to spend that time, since it was when I could be most productive. I made the choice to paint and remained focused on that.

The book was always lingering in the back of mind. It bothered me, having it unresolved and unfinished. It wasn't like me to give up on anything I started. I caved in and bought the Dragon dictation software, hoping I could use it to be productive during my time in bed. I figured instead of playing my Nintendo DS, reading, or watching TV, I could begin putting my thoughts down and use my evening hours to write. I still felt silly speaking to the computer, but felt a little better knowing at least I had privacy. The software was glitchy and I didn't have the patience to do the training exercises. It ended up being more irksome than handy, and yet again I abandoned the project.

This past April my ex-boyfriend Jimmy resurfaced into my life. He knew I was struggling, and was at my wits end, with everything. He wanted to know how he could help me. I instantly knew that THIS was my opportunity to dust off my book file, and tackle the project once and for all. He was happy with the idea and we decided to begin working on it right away. I just knew that having HIM help me, would give me the accountability of meeting deadlines and the fact that it was OUR project gave me the focus and motivation I needed. I felt like deep inside there was so much I wanted to say, so much I wanted to share. I believed my story has the potential to help others and I felt like it would give Jimmy and I some much needed closure and mutual understanding. Although he'd remained in and out of my life over the last six years, there was a lot of things he missed out on. Out of all the people in my life, it was important to me that he understands my WHOLE experience with paralysis; from start to finish. I wanted him to understand my suffering and hope that having completed the project together it will put everything into perspective for him, and for us.

At first it was really challenging, just laying out the structure for the book and putting together a game plan. It had been so long since I had really thought about the dark days of Kessler and my time at Cheshire. I knew writing the book would open up a lot of old scars, but I felt ready and able to handle it. Luckily, for a large majority of my time post accident, I have kept blogs, or journals. I was grateful to have those entries to use as a reference, to try and create outlines of what I wanted to say in each chapter, and to put everything in chronological order, and to attempt to maintain a coherent flow, without too much repetition. If my memories were fuzzy, or I had gaps in my records I turned to family and friends to double check my facts, and to piece it all together.

Jimmy would come down to NJ (from PA) about once a week, or every other week and he would help me type huge chunks of chapters. I tried my best to write a little every day. Having my iPad was a tremendous help. As my health had declined, further and further my time sitting up has progressively decreased. Thankfully, I can write on my iPad laying flat in bed. It allowed me to keep up a fast momentum. Every so often, throughout the day or night I would write a few paragraphs. I tried to save the emotional parts about my relationship as my own personal project and forced myself to get those parts finished, between our visits.

The first third of the book was emotionally the hardest, but having Jimmy's support helped me stay focused and kept me on task. The last third of the book was the easiest part to write, because it focuses on the most current events in my life and my present day thoughts, opinions and struggles. I ended up writing middle portion of the book last, since I had the least amount of reference material to go off of. It took me a while, to interview friends and family and get the outlines finished. Once the outlines were completed, I just worked on checking off each topic from each list, until it was finished.

That said, from start to finish, it took me the past four and a half months of intensive writing to get the entire story down on paper. It's twenty one chapters long and over 250 pages. It was a monumental task, but I did it. I couldn't have done it without Jimmy and am eternally grateful for his assistance, in helping me realize my goal. The hardest part is over. I've said everything I want to say, and truly believe that he and I were meant to do this project together. For so long, we've both struggled over trying to make sense over why we met, and had such a wonderful, loving relationship, only to see our dreams get shattered and torn apart. This is not the life either of us wanted, or planned, but this book is something that we were able to turn our pain and tragedy into something good, and helpful; that hopefully will benefit others and inspire people to support research and change their perspectives on life and death. It will be our legacy and something that can continue to help, and inspire others to enact change, even once we're long gone. That feels good.

Right now I've been working with a couple of editors and trying to determine how much it will cost to get the book professionally edited. I've gotten some great feedback, but it's going to take a substantial (between $2,000-5,000) amount of money to get the job done right. I'm waiting to hear back from lawyer, to see if this is something I can use my trust for. We shall see. Honestly, I think it should be permissible, because it's definitely an expense that will go towards improving the quality of my life and hopefully that of many others. Once I get the editing logistics/fees ironed out and the book is edited and ready for publication, I plan to use lulu.com to covert the book into e-book (aka paperless) format. Once it's published it will be available to purchase through Apple's iBook app (on iPad), through Barnes and Noble's Nook and Nook Color and hopefully through Amazon's Kindle.

I'm super stressed, waiting to hear back from both editors with quotes and timelines. I'm even more stressed at how much it might cost me. I'm anxiously awaiting my lawyers input (and hopefully his approval). As soon as I have those answers, I'll know what is the best way to proceed. Either way, I have faith it WILL get published soon (within the next few months at the latest). I'm thrilled about it and can't wait to share my story (my WHOLE story) with the world. I look forward to hearing reader feedback! I'll keep everyone up to date on the progress and definitely inform you all once it's actually for sale. I'm so close, and very proud of myself. I hope readers will enjoy it, and that it will open some hearts and minds.

- Posted using BlogPress from my iPad

"Schwartz Center Rounds Annual Dinner"

2011-09-12T19:58:00.002-04:00

I'm happy to announce that fifteen of my paintings are going to be on display (October 3, 2011) at Overlook Medical Center, as part of their "Schwartz Center RoundsAnnual Dinner." The event facilitator, Jeanne is a friend of mine. She and I met online about six months (through my many searches about palliative care and hospice). She is the "Ethics & Palliative Care Program Coordinator" at Overlook Hospital (here in NJ). I had contacted her, asking about patient's rights and shared a brief history about my accident, and my struggles. It turned out that she and I shared a mutual acquaintance (from Kessler). We shared email correspondences over a period of several months, and she was very moved by my blogs and artwork. Before long we became friends. She has been very supportive, and caring.

She came to visit me a couple of months ago, and we discussed the possibility of displaying some of my artwork at the hospital. She explained that she worked very closely with doctors, nurses and other medical professionals and thought that the medical community at her hospital could benefit from seeing my paintings and reading my writing. She said that part of her job entailed helping new doctors and nurses learn to be more compassionate and empathetic to patient's needs. I agreed, and was happy for the opportunity. I have often felt frustrated by the lack of help that medical science has been able to offer me, and upset by the treatments and lifestyle that I'm forced to endure because of my injury. I do believe my artwork could potentially help medical professionals better understand what it is like to live paralysis, and to suffer with chronic pain and illness. It has always been my hope, that by sharing my writing and my artwork that I would educate others and open people's hearts and minds.

I truly believe in order for a cure to paralysis being found, more people must understand how horribly and profoundly it can change a person's life and how difficult it can be to live with it, everyday. I have also come to believe strongly in patient's having the right to advocate for themselves and to have the right to die with dignity (when medical science can not offer a cure or relief to severely debilitating or incurable illness/conditions). I think it is important for medical professionals to do everything within their means to give patients the highest quality of life they possibly can, to listen to what their patients are saying and to alleviate suffering whenever possible.

I think it is crucial for the medical community and society at large, to recognize that some conditions are worse than death, and when/if a patient is mentally competent to asses his/her own situation, that he/she alone should be able to determine what lengths he/she is willing to go through to preserve his/her own life and those wishes should be respected. In many ways, I feel our society is more "humane" to our pets than we are to millions of people that are essentially forced into suffering, because there is no cure, or treatment available to alleviate their pain. Not everyone with an incurable, terminal, debilitating disease or injury would choose death, over life. However, I believe there ought to be a quick, peaceful alternative available to those who want it. I hope my artwork and my writing will inspire change.

I think this dinner at Overlook hospital is another small step in my journey to open hearts and minds towards suffering, quality of life and death. I really hope my works hits a soft spot and sinks in, for all the medical professionals that attend. I hope it makes an impact.The dinner itself is an annual event, and has an interesting history. I feel honored to be included in the tradition. I asked Jeanne to tell me a little bit about the purpose of the dinners and about their collective history. This is what she sent me:

"Schwartz Center Rounds were started by Kenneth B. Schwartz, a health care attorney from Boston, who died from lung cancer at a young age. He wanted to leave a legacy of support for professional healthcare workers to enhance and replenish their abilities to provide compassionate care for patients and families. He recognized that some of the most important work of healthcare professionals is to deliver compassion to their patients (hand holding, listening, laughing, combing hair, etc.).

The purpose of the monthly Rounds are to provide a forum and “level playing field” where caregivers from diverse disciplines (doctors, nurses, social workers, chaplains, dietary workers, etc.) discuss difficult emotional and social issues that arise in caring for patients. It is a forum to explore the human and emotional side of clinical medicine ---but with the focus on the patient-caregiver relationship rather than solely on the patient’s medical situation. Even though doctors and nurses cannot cure many conditions/diseases, they can still relate to one another and to patients and families in a way that provides hope, support and sustenance to the healing process.

We have these Rounds monthly and usually present a case that was difficult or emotional in some way. We often shed tears. Once a year, we hold a special “Rounds” where we invite a patient or family member to share their views about the experience they had. As you can see, your artwork and story will be a very powerful topic for discussion and expression of feelings from all.

Your paintings and your voice will carry your story to the hearts of each of those who come and will strengthen their ability to reflect on the suffering of all patients."

Good stuff :) I'm excited to hear the feedback!

- Posted using BlogPress from my iPad

Sketchbook Is Finally Digitized & Online!

2011-07-26T16:07:00.005-04:00

Last year I entered an Art House Co-Op project, called "Sketchbook Project: 2011." Each artist was asked to choose a theme from a list of predesignated themes (I chose "Help!") and sent a 80 page sketchbook. The only requirements were to fill the sketchbook according to the theme you chose & send it back. Each sketchbook was given a barcode for tracking purposes. About 10,000 artists participated & the sketchbooks were taken on a cross country tour, to multiple exhibits, where people from all different states could look through them. Once the tour was concluded, the books were all brought back to the Brooklyn Art Library and some were digitized (if you chose to pay the additional fee) as part of Art House Co-op's digital library.

Since I do all my artwork by mouth, it was much easier for me to create the sketches/artwork for my sketchbook on my iPad & print them out. I created a description page and image for each two page layout. The book is now digitized and available for viewing through my Art House Co-op profile, or directly through this link (www.arthousecoop.com/library/4604).

It took me months to fill the book. Unlike painting, I can work on my digital artwork in bed. Since I haven't been well enough to get up & paint as often as I'd like (these last couple of years) my iPad has given me a new outlet for artistic expression. I thought this project would be a great way to help raise awareness about paralysis & spinal cord injuries. The theme "Help!" fit in perfectly with my intent to ask people to help me (and the millions of people suffering with paralysis world wide) by supporting research for a cure to paralysis. All the sketches, digital images & collages I included in my sketchbook are about my struggles with my accident, my injury and my life with paralysis.

I'm pleased with how the book turned out (with the exception of the first two page layout- my collage was pasted upside down by mistake). I'm hoping that now it is available online for viewing it will get a lot hits, and get people thinking about paralysis & spinal cord injuries. They say a picture is worth a thousand words, so I hope my artwork has an impact on the people that see it. I want to open people's eyes, educate the general public & hopefully inspire some people to support research & advocate for a cure. I'd love to hear feedback & please share the link with friends! Thanks <3

- Posted using BlogPress from my iPad

Control Freak, With No Control

2011-07-17T00:42:00.003-04:00

One of the many annoying things about being completely paralyzed, and totally dependent on others is the fact I can't take care of my own things. Not being able to be self sufficient with my personal hygiene and toileting needs are by far, the worst most embarrassing, degrading and invasive aspects of being paralyzed. Not being able to take myself to the bathroom, wash, dress, groom & feed myself are the aspects of being paralyzed I hate most. However, not being able to take care of my things, and maintain my living space is the second worst aspect of not being able to do anything.

Even though I have help from people (aides, nurses, friends & family) and try my best to direct how I would like things done, and where things should go, I'm forever frustrated because no matter what, no one ever manages to do things exactly the way I would like. It boils down to two key problems. First off, there are just too many "hands in the pot." On a daily basis I've got three, to four different people helping me. Even though I try my best to be organized and label everything I possibly can, things routinely get misplaced. Either the person helping me doesn't put the item away (right away), and the item ends up sitting in the wrong spot for days (and then potentially gets moved by someone else- in the effort to straighten up) or it gets put away in the wrong place all together. The second annoying thing that is most frustrating is that most times things are not as clean, or orderly as I'd normlly keep them, if I could care for them myself. The old adage "if you want something done right, do it yourself" most certainly applies to me, for basically everything. However, my paralysis keeps me from being able to do anything besides giving verbal directions and asking for help, and then hope for the best.

I try so hard not to lose my temper, get impatient and to not let "the little things" get to me. In the larger scope of everything I deal with (and am forced to endure), thanks to paralysis, I really can't afford to obsess over material things. Rationally, logically, I understand my stuff is just stuff. At best, my material possessions offer me a small amount of comfort and distraction. They don't really impact, or influence the bigger, more pressing dilemmas, physical limitations and burdens I deal with. I have enough on my mental "plate" at any given moment, that would ordinarily seem completely overwhelming to the average individual. If I let myself get mad or upset, every time I come out of my room to see a dirty kitchen, or my aides can't find something I'm looking for, I would go absolutely mad.

I think what makes living with paralysis especially hard for me, is the type of person I was before my injury. When I was on my feet, living independently I had a classic "A-type" personality. I was what you might call, a "control freak," and definite over achiever. I planned my life down to the nano-second. I put a lot of pressure on myself to succeed in everything I did: as a student, as a teacher, as a daughter, as a friend, as a person. I hid every self perceived flaw and tried to be as close to "perfection" as possible. Being organized, and a planner helped me thrive and even though I often balanced a lot on my plate, I managed well.

I remember when I was in college, my friends and family would tease me, because every semester I created a color coded grid, allotting time for everything: from class, to study time, to work, to sleep, to time with my boyfriend. I kept my time management chart with me at all times (in my school planners) and had several posted (one in my bedroom and one posted at my boyfriend's). I always used green to signify "boyfriend time." My ex was a much more laid back, and a "go with the flow" kind of person, so he was always forever getting frustrated with me. Looking back, it was a bit over the top, but I know it helped to keep me focused and on task. I ended up graduating from college with a 3.9 GPA, and I definitely attribute that to my ability to multi-task and micro manage my life.

Being organized also definitely helped me to be a good teacher. I had my lessons planned out months in advance (so I was never caught off guard, or left scratching my head for things to do). Everything in my classroom had its place and my students were each assigned roles (which I alternated from month to month, based on my seating charts). Even though I had nearly five hundred students, in twenty different classes, I always knew what I was doing with each group, and easily juggled up to eight or nine different projects, during any given week. My classroom ran like clockwork, which helped my students to stay on task and made it easy to maintain control and give directions.

By the time I had started teaching, I had graduated from using my paper college planner (highlighters and tons of post-its) to a hand held electronic organizer (Palm Pilot). My Palm Pilot was my life saver. I relied heavily on it, to balance my time between work, graduate classes, family time, going to the gym, running errands and my social life. My apartment was always spotless. I had a particular way of doing everything: cleaning, laundry, keeping records, paying bills, etc. I had a particular way for folding my clothes. My closet was organized by color, and grouped according to the various types of clothing (strapless shirts, short sleeve shirts, long sleeve shirts, skirts, capris, kakhis, dress pants & jeans). My dvds, and cds were alphabetized (since I owned hundreds). I kept all my receipts, and paperwork neatly filed in filing cabinets. My books shelves were organized by topic. Everything was easy to find.

I tried not to let things pile up, and cleaned up after myself everyday. I enjoyed coming home to a clean living space. I loved the crisp, clean scent of Clorox wipes, Swiffer solution, laundry detergent, Febreeze and Glade Plug-ins. I liked being able to always know where my things were, and to have everything tidy, uniform, and in its place. I always felt more peaceful and relaxed when everything was put away and everything was clutter free and sparkling. I tried to keep my home and classroom clean and organized at all times, so if an uninvited guest, or surprise visitor (like my principal- at work obviously) showed up, I wouldn't feel caught of guard or embarrassed.

My paralysis has taken nearly every ounce of control, and power away from me. The only thing I can do myself (once I get set up) is paint, write, handle my finances, shopping and direct the people helping me. If it weren't for the computer, I would have an even smaller list. Since I can't handle, or put away my own things, I have to rely on my memory, for keeping track of everything. It's critical that my helpers follow through with my directions, so that there is consistancy and I know where everything SHOULD be. Even though my family, friends and aides try their best to follow directions, everyone has his/her own little quirks and their own standard of cleanliness. No one person does things exactly as I would. I've had to learn to bite my tongue many, many times and learn how to be flexible and to go with the flow. Despite the fact that I have vastly expanded my tolerance for patience, there I still some days when I just want to rip my hair out & scream.

There are some things that require demonstration. No matter how great, or poor my vocabulary is (in English or Spanish) there are just times when I wish I could just SHOW the person helping me what I want, or what I mean. At times it is exasperating having to explain, and re-explain myself. There are many times when I have an aide or nurse helping me, but I end up calling my mother or sister over, because they know what to do, or how to do it. It's much quicker (and less frustrating) to have someone who knows what I want to teach, or demonstrate to my aide how to do what I want. It saves me a lot of time and aggravation.

The other thing that has been so difficult for me since my accident is having to share my space (and all of my things) with other people. For one, I live in a two bedroom, two bathroom apartment, so there's not a tremendous amount of space. My mom and sister live with me and although they've gotten better over the years, their definition of "clean" and "organized" doesn't usually stand up to my picky expectations. Then you have to consider the fact that I have several aides and nurses, which also touch, clean and put away my things. It only takes one person to misplace something, and I'm stuck playing detective, hunting through the entire apartment. Plus, almost all the furniture and stuff (in general) in the apartment is mine. I expect the common areas which we share, like the living room and kitchen to be clean. It irks me when they're not because I feel embarrassed by a messy home (which my aides, nurses & visitors see) and it also ticks me off when I feel as though my things aren't being cared for properly. Although I'm not miserly or greedy, I do take pride in the things I buy and own. I think it's unfair (and frustrating) when I see my things being misused, or neglected.

Certain things that bother me, like crumbs on the counter, half empty cups, food wrappers, shoes and articles of clothing lying around, don't seem bother my mom & sister. It's little, in the scheme of things, but it's hard not to get annoyed or angry. I hardly ever see their room or bathroom, but do occasionally ask my aides and nurses about their conditions. I feel it's my responsibility (but get annoyed because they are adults & feel I shouldn't need to check up after them- or nag them) because it's my apartment. They might not be embarrassed by ring stains in the toilet, or toothpaste in the sink, but I am. In my house growing up (with my dad & stepdad) laziness, and sloppiness weren't tolerated. I used to groan & complain as a kid, but now I understand it's because they worked hard for what we had and wanted my brother and I to respect that fact, and help them maintain things.

I was taught (at home & at school) that people judge you by your appearance. If you dress sloppy and keep a messy home, people are bound to think less of you. First impressions matter (in matters of building personal and professional relationships and in getting a job), how you speak, carry yourself and maintain your home all reflect on the type of person you are. I've always held those lessons close to my heart. I always want to put my best face forward, in every aspect of my life. I try to take pride in myself (although it's challenging given my condition) and my things and want others to take notice of that fact.

It's frustrating having to share my space (although my family is very supportive & comforting in many ways- I'd much prefer to be independent). It's hard having so many other people touch me and my things. I try my best to maintain control over what I can, but know there's only so much I can do. I can't realistically hold my family, aides and nurses to my personal standards, and expect them to be as nit picky as I am. I know that's too much to ask, and every time I try, I only end up getting more frustrated, dissolutioned and agitated. My accident made me go from being a control freak, to having absolutely no control whatsoever overnight. It hasn't been an easy transition, learning to compromise, lower my expectations and having to just "let go" of certain things.

If anything, the biggest lesson my accident has taught me, is that control is just an illusion. We all think we have control over our lives, but in reality all the best plans in the world can be shattered in an instant. Control is a coping mechanism we each use, to give our lives order and purpose. Unfortunately, anyone can lose control (over everything) easier, and more quickly than most people care to acknowledge or realize. Even after everything I've been through, and as helpless as I am, I'm still guilty of trying to be "in control" of what little I can. I know at times it might be futile, or even possibly end up blowing up in my face (when things don't turn out the way I "planned"- nothing rarely ever does), but it's ingrained in my nature and a hard habit to break.

- Posted using BlogPress from my iPad

Sleepless Nights

2011-07-11T22:14:00.002-04:00

I had a horrible weekend. As many of you know, I've been battling with insomnia nearly my whole life. My biggest problem has always been quieting my racing thoughts, especially when I'm stressed, or have something big to look forward to (good or bad). Noise has also always been an issue for me. I can't fall asleep to silence, because my mind will wander endlessly. White noise isn't distracting enough to quiet my thoughts. If something is too interesting, it'll grab my attention and compel me to keep listening. Even as a child, I needed something to distract me from my thoughts, just enough to lull me into sleep. In order for me to fall asleep, whatever I'm listening has to be familiar, without being catchy (like music, which I tend to sing in my mind). When I was young, I often listened to the same books on cassette, over and over again. Once I got a TV in my room, I developed the habit of falling asleep to the familiar sounds of my favorite movies (either VCR tape or DVD, set on sleep timer).

Once I've finally managed to fall asleep, the second problem I have is that I never seem to fall into a deep sleep. Even though I usually recall having several dreams each night (which are indicators of REM sleep), it's as if I'm always right on the verge of consciousness. From what I've read, the sleep cycle repeats after REM sleep. Since I know I have several dreams each night, that would suggest I am achieving deep sleep at some point. However, it hardly ever feels that way. The slightest noise will wake me up, and I often have to start the entire process of trying to fall asleep all over again. As an example of how light a sleeper I am, would be that (when I was still on my feet) I once woke up to the sound of water dripping onto my carpet. As soon as my alarm would ring in the morning, I'd shoot out of bed, wide awake. In fact, I used to get so annoyed, because my brother would often let his alarm ring and ring. Even through two closed doors, and a hallway apart, I'd end up charging into his room to wake him up, so I could attempt to fall back asleep.

Since my accident, my insomnia has only intensified. I'm forever trapped with my thoughts (often sad and/or unpleasant) and almost always stressed out over something. The first year and a half after my accident was the worst. I was definitely sleep deprived during that entire period. Between the stress, shock and trauma of all the sudden change and loss, and the constant interruptions and noise (aides coming to turn me every two hours, nurses coming in my room with medication, or to take blood, my roommate, the call bell and loud speaker) it was near impossible for me to sleep at all. Nights were terrifyingly lonely, and it is when I felt most vulnerable and trapped within my situation. I had few pleasant distractions, and much too much outside interference. Although the nursing facilities I lived at tried giving me oral sleep aides, I was lucky if I got a couple of hours of broken sleep each night. Being sleep deprived for so long, definitely contributed to my overall health and mood. I had been so tired, for so long, it really felt as though I was being tortured. By the time I finally got myself out of the nursing home, I felt as though I had been very close to having completely lost my sanity.

Since my accident, I probably slept the most soundly I ever have (within the past six years) during the first few months of living in my current apartment. I finally had peace and quiet. I only woke up out of discomfort (maybe a couple times each night) and could usually fall back asleep rather quickly, after my roommate would help me. My roommate (at the time) worked full time, and went to bed around ten o'clock or eleven. Thankfully, he was a pretty heavy sleeper and although it might've taken me a couple of rings (I had a call bell system hooked up between our two rooms-which are at separate ends of my apartment), he was able to fall back asleep immediately. In fact, he got so used to our routine, I'd almost swear he was sometimes sleepwalking. He'd come in my room, and without a word between us, he'd straighten out my legs (which move involuntarily, due to spasms), reposition my arms, fix my hair (which often gets on my face and is annoying) and give me a drink.

I think I slept so well those first few months, because of the lack of unwanted noise (I still have to listen to CDs or DVDs) and the fact that I was the happiest I had been, in a very long time. I had just achieved a huge feat, by freeing myself from the nursing facility and was feeling relatively healthy. Getting out of the nursing home felt like a high. It was the first big, positive achievement I had made, since my injury. I was also much more active during the day, in comparison to my life now. During that time I felt well enough to get up in my chair, for eight or more hours each day. I spent all day distracted, painting, reading and playing games on my computer. I also had more responsibility, making sure the groceries got bought, telling my aides what meals to prepare and sorting through my mail (my mom & sister have since taken over those tasks- which I don't mind).

Ever since getting a bedsore on my upper thigh, back in 2008 my health and stamina have been declining. I ended up needing to be bed bound for a few months, while the wound vacuum was attached to me. I tried to slowly rebuild my stamina, by getting up for only a few hours each day. However, I've never quite been the same as before the sore. Sometime during 2009 I started getting this mysterious chest pain (which I have still yet to find a definitive cause for, or solution to), which seemingly subsided a bit once I returned to bed. I also developed hemorrhoids around that same period, which I've often thought could account for why the chest pains seemingly bothered me more intensely and more frequently while being seated. While I'm sure my hemorrhoids play their part in my snowballing failing health, and definitely have made bowel program more unpleasant for me, they don't always correlate to the chest pain. There have been countless occasions where the chest pressure begins while I'm lying in bed, and persists for hours.

My bowel program has really started taking a lot out of me these past couple of years. During BP I definitely experience autonomic dysreflexia, and afterwards often feel lethargic, and achy for hours. For at least the last year and a half, to two years, I've been staying in bed all day after BP. Now the chest pains seem completely random, and although some of my AD symptoms lessen when I'm lying flat, the chest pressure flares up regardless of whether I've been sitting up all day or not. Getting up (other than for BP & shower) every other day has had a double edged sword effect on my overall health and stamina. My body just isn't used to getting up every day. When I do, I seem to tire much more quickly than I used to.

Ironically, even though I often feel lousy and more fatigued than I used to I actually have MORE trouble sleeping now, than in the recent past. One of the leading (and most annoying) reasons is that it has become increasingly more difficult to be comfortable, even despite the fact I'm laying down. I'm often uncomfortable, due to low grade fevers, the mystery chest pain, and on and off chills, or cold sweats. I deal with two out of those four symptoms every night. Even though I might be super tired, if I'm not comfortable I can't sleep. I end up asking my aides, mom, and sister to check my catheter, reposition me, fix my hair, give me a drink, take my temperature and scratch itches (on my face) at least a dozen times each night before I finally doze off. Some nights I listen to the entire length of my CD (I enjoy listening to the Harry Potter series) and have to ask my sister to restart it, before I fall asleep for the first time. Staying in bed has decreased my stamina for sitting, but when I do sit I'm often uncomfortable and want to lay down. It's become a lose-lose situation.

Over the past two years, I started taking sleep aides (again) in a desperate attempt to help take the edge off and help me fall asleep, despite any physical discomfort I might feel. I've tried Meletonin, Ambien, Tylenol-PM, anti-histamines, Remeron, and Xanax. I'm still taking the Remeron (which is an anti-depressant my doctor prescribed for it's drowsy side effect- one of the pills I first tried in the nursing home) at its highest dose (45mg) at bedtime. My doctor also added Xanax at bedtime, in hopes of helping to calm my mind (it's an anti-anxiety drug). Honestly, nothing has seemed to actually "knock me out" in the way I wish they would have.

Lately (within the last six months or so) my stress levels have been through the roof. I'm really at my wits end with my entire lifestyle. I've been seriously considering refusing treatment, and putting an end to my suffering. I've done a ton of research, investigating my options and have taken measures to protect my rights, and ultimate wishes. It has not been an easy to think about my death, and the effects my demise will likely have on my loved ones. As difficult it has been to share my thoughts with my family and friends, I have felt it necessary to be open and honest. Needless to say, I've had many sleepless nights; thinking about what I will have to endure in order to die, how my decisions will effect the people I love and constantly weighing the pros and cons of my day to to day life, against my guilty feelings of not wanting to hurt the people I will ultimately leave behind. My mind is forever jammed pack, full of difficult choices and harsh realities.

Despite having peace and quiet, the comfort of having my family and pets with me, my failing health and exhaustion with my situation has got me more stressed out than ever. I feel as stressed out now, as when I was newly injured. I'm just so fed up with feeling sick so often, and finding little, to no relief (even though I've put myself through a dozen different medical tests, and sought out various forms of help- spiritual, mental & medical) from anything I've tried. The reality is there aren't many options available to me to make my situation any better, or more tolerable. I've BEEN trying my hardest for six years. I'm just tired, in every sense of the word.

I realize that getting inadequate sleep can (and most likely is) feed into my feelings of being physically ill. I know that it is a vicious cycle. I'm desperate, to find something that will work better than what I've been taking. I'm back to where it is taking me hours to fall asleep, and I wake up several times each night. Each time I wake up, it can take up to an hour before I fall back asleep. Nights before BP are ALWAYS more restless. Some mornings I actually dose off for a minute or two on the toilet, because of how tired I am. When I get done with BP I often have to fight myself not to take a nap, because I'm afraid it will be harder to sleep that night. I end up napping half the time. It's an awful cycle.

Knowing that I was about to reach the maximum dose of Xanax (which is 4mg- I was taking 3mg), I decided to ask my doctor if I could have something stronger. I had asked for Valium; instead he prescribed Ativan. I didn't question his decision. I figured, as long as it's stronger and might have a better chance of "knocking me out" for a few hours (at least), it was worth trying. My doctor only started me on 1mg of the Ativan. I was doubtful it'd do anything (since I seem to have a high tolerance to medication), but took it anyway to give it a chance. The first dose I took was on Friday night (7/8). Instead of passing out, I felt wired all night and barely slept. Even though I felt tired the next morning, and a bit nauseous I forced myself to get up in my chair. Saturday night I took the second dose. Again, I didn't sleep all night (but I attributed it to the fact that a new nurse was scheduled to come in the morning). As soon as the nurse and my aide laid me down in bed after BP, my whole room started spinning.

I could barely tolerate them having to turn me back and forth to dress me. Waves of nausea came over me. I couldn't stand to lie flat, for fear of throwing up. I asked to be put on my left side, in the fetal position. I managed to keep down a bit of toast and some juice, and stayed on my side for several hours (until the pain in my shoulder became too intense). My mom went to the pharmacy and bought me something for the nausea (Emetrol-it's a gross cherry flavored syrup). I took some, but it probably wasn't as effective as it could've been since I insisted on chasing it with a bit of juice. I ended up sitting up in bed for a few more hours before the nausea started to really calm. At times, it was so bad I was in tears. If there's one thing I hate more than BP, it's nausea.

In the end, I managed to keep down some chicken noodle soup, some toast with peanut butter, ginger ale and another dose of Emetrol, before feeling near normal. I figured it wasn't coincidence that I had just started the Ativan, and began feeling so ill. I wrote to my doctor, letting him know about my hellish weekend and informed him I was going to discontinue taking the Ativan. He agreed, and told me I could switch back to the Xanax, and that I could up the dose to the maximum 4mg. That's what I did last night and thankfully, I think my hunch was right. Not only did I sleep well last night, but no more nausea today. A small victory.

I'm wondering how long the Xanax will keep helping, as I've obviously already built up a tolerances to lower doses. The whole ordeal has got me nervous to try anything different for a while. I'm praying the Xanax keeps working for at least a couple more months. I'm tired of being sick and tired of being tired.

- Posted using BlogPress from my iPad

Love Stinks

2011-07-04T22:44:00.007-04:00

So, today is my thirty-first birthday. I'm feeling more run down, old, and exhausted than ever. I realize thirty-one is nothing, in terms of the average lifespan; but my life is anything from but average. I always thought by now, I'd be married with children. Before my accident, I was living on my own as a teacher, and had met the love of my life. He made me happier than anyone else I'd ever been with, and I truly believe we would still been together, if my accident never happened.

It's days like these that make me reflect on my life, my mistakes and my regrets, more so than ever. My birthday has become a day a dread, because I know the emotional mess it makes me. Every year I spend paralyzed is another year wasted, and so many wonderful missed opportunities. I had a terrific life, before my accident and experienced a lot in the first (almost) twenty-five years of my life. I know exactly what I'm missing out on, and how much better life could be. You can't miss what you never had, but I had nearly everything I'd ever wanted. Now, I feel stuck as a spectator to life, and watch everyone else around me enjoying the things I want most desperately, but can't have because of my injury.

Every birthday is a bittersweet reminder of what I don't have, and wish I did. Every year I watch more and more and more friends get married, and have babies. Very few people understand what my day to day life is like, and how very limited I am from doing things. It's easy to say "you can still do everything everyone else can, just in a different way." Those same people that say that, often don't consider all the work and effort that goes into doing the simplest of things. Everything I choose to do, requires the intervention of others. It gets tedious & annoying. Not to mention, there are just certain things I CAN'T do, no matter how you look at it. I can't have a normal sex life. I'm cut off from 90% of my body. Having someone else go through the motions of something I can't even feel, or enjoy seems frustrating & pointless to me. I can't experience a normal pregnancy, or care for a child. I can't even care for myself. Few people understand the isolation, and emptiness that I feel.

This past week, one of my ex-boyfriends (Mike) got married. Another just got engaged (Eric). It's not like I'm still IN love with either of them, but they will always hold special places in my heart. We were friends (and hung out from time to time, before my injury) and although I'm genuinely happy for both of them, I can't help but feel sorry for myself. It's been hard enough watching all the rest of my friends get married and start families, but it hit me really hard to know they are now both part of that list as well. Obviously, as ex-boyfriends & girlfriends we shared a special bond, beyond normal friendship. During our time together (with each of them) we had fantasized of a future together. It seems silly that it bothers me so much, but I think my situation has made me hypersensitive. If I were married and living a normal life, I probably wouldn't have given either situation a second thought. I would have been able to genuinely celebrate with them. However, that's not the case. In fact, I feel lonelier than ever...

I wasted a lot of time (almost six years) with someone (Joey), that I totally regret. I had lost touch with nearly all my friends during my time with Joey. He was very jealous, and controlling and I was foolish enough to put up with it. I left him the year before my accident. During that time I got back in touch with both Mike & Eric, since we shared mutual friends. It was great catching up on old times, and a being part of their lives again. They had each moved on and were dating other people, which was fine. It was just nice reminiscing and spending time with our mutual group of friends (two of my closest friends-that we all share-Christy & Moody). After the way I had cut ties with everyone, I had been thankful they were willing to let me be a part of their lives again.

Life moved on, and we all remained friends. Then I met the love of my life, Jimmy. We dated for five months before my accident. It was a whirlwind romance. Our time together was by far, the happiest of my life. When I got hurt, we had been only days away from moving in together. Instead, everything we had was violently ripped away. We tried our hardest to keep our relationship going, despite my accident, but it collapsed after six months of battling with an impossible situation. He had been forced to move back to PA. I had been stuck in a nursing home; completely crushed in every way. Although it killed us both, we decided to go our separate ways.

Over the past six years, I've never stopped loving him, or been able to get past what we had. My love for him, has kept me from being able to open my heart up to anyone else. For a long while (the first two years) we stayed out of contact with one another. During that time, I tried to force him to the back of my mind, to dull the pain. Then in 2008 we got back in touch, and tried to stay in contact as friends. We corresponded from time to time, and talked on the phone, and he came to visit me one time. All the while, he was in a serious relationship with someone else. Eventually, it just became too painful for me. No matter how hard I try, I just can't see him as a friend. Having him in my life, with her in the background, felt unfair to both of us. I decided it would be best if he let me go, and live his life without me.

It sucked, and I felt like I had lost him all over again. On the other hand, I had to face reality. He had moved on, and loved someone one else. I was only deluding myself into thinking there was any chance left, for a future for us. Being just friends was intolerable, and I've been through enough pain & loss, to not want to torture myself further. As much as losing Jimmy has hurt me, I've never held it against him, or thought less of him. I don't know if I'd be able to deal with being with him, if he were paralyzed. There's so much change & sacrifice that comes along with living with paralysis. I certainly don't want this life for myself, and feel selfish expecting him to give up a normal life, when he has a choice.

Long story short, Jimmy ended up breaking things off with his ex-girlfriend (not exactly sure why & am not going to presume it had anything to do with me). He contacted me, letting me know he was single and he has been back in my life for the past several months. He says he regrets leaving me, and that he does love me. Although that's music to my ears, he's not saying he's willing to try to be more than friends. It's all very confusing. On one hand he says he loves me, and wants to be a part of my life. On the other hand, he's not willing to make a commitment to me. For me, there's only two logical ways I can interpret his mixed messages. One could be, he genuinely loves me (as a friend), but is not IN love with me and wants the freedom to be able to sleep around and have a normal life, in that regard. The second possibility could be, he IS still in love with me, but is just scared.

He's said before that he wouldn't want to make any promises to me, unless he was certain he'd never want to leave again. My brain understands that, but my heart and body are exhausted. I feel as though I'm on the verge of "checking out" on this life and have absolutely NOTHING left to lose. If it were up to me, I'd want to give it my all, because I know my time is short anyway. I feel like I've been so hurt, and lost so much in these past six years, that I have nothing left to lose, and can't possibly be hurt more than I already have been. I'm trying my best to enjoy our time together, but it hurts knowing that there is a distance between us, that didn't used to exist. I feel his hesitation, but don't know the true reasons behind it.

What hurts the most, is feeling like I've never been good enough, for any man to want to be with me forever. I was with Joey for almost six years, with no ring to show for it. Mike was my first love, and although we talked about getting married, we were just naive kids. Eric never seemed sure of anything (and I'm so happy he finally found someone that makes him truly happy). Jimmy & I talked of marriage before the accident, and I do believe we'd be happily married- if I never got hurt. He even wanted to propose to me when I was clinging to life in I.C.U. and at Kessler. Looking back though, he was just just desperately grasping and scared of losing me. Neither of us understood how serious, or life changing my injury was at that point.

Here I am, thirty-one years old and feel completely isolated, devoid of affection and alone. I'm not talking about the love my family and friends give me. I'm referring to a mate, a companion, a second half, a soulmate. I'm missing that in my life, and feel very deprived not having that special someone. What sucks even worse, is that no matter how hard I try to not project my own feelings onto other people, I feel as though Jimmy should be that person; or at least I wish he was. Obviously I can't force him to feel, or do anything he doesn't want to. To push, or insist that he commit to me would defeat the point entirely. I want him to love me, for me, regardless. He either does, or he doesn't.

What really sucks, is that my whole life, friends, family and tons of men have told me how "special" and "beautiful" I am. I've heard those words a million times over. Everyone that has claimed to love me, at some point in my life has said, "You're an amazing person; beautiful, inside and out." Even since my accident, people have said those words to me. However, they all sound like hollow, meaningless words. If they were true, surely I could find someone to be with me. Then again, I know I'm so stuck on Jimmy, that I don't give anyone else a chance. However, he's one of the people in my life that is guilty of saying those exact words to me. At the end of the day though, words are just words. I often wonder if people just say things to make me feel good, or to give me hope, for my hopeless situation. It doesn't make me feel good to hear how "amazing" I am, unless those words are backed up with action.

I feel like no matter who I've ever wanted to be with, I've never been good enough for them. I'm supposedly this great, talented, amazing, beautiful person, but yet that's still not good enough to want to take a chance, or for anyone to have wanted to spend their life with me. I feel like with almost every relationship I've ever had, there's always been a "but" factor. "You're beautiful, but..." "You're terrific, but..." "You're my soulmate, but..." That hurts and really sucks. It makes all the pretty words, and thoughtful sentiments feel empty and false. I mean, if you truly believed someone was your "soul mate" wouldn't you at least try giving them a second chance?

- Posted using BlogPress from my iPad

Yes. Another Butt Related Blog...

2011-07-02T01:32:00.005-04:00

Today I went to see the surgeon my physiatrist suggested to me, to get my hemorrhoids removed. Initially I was scheduled for the procedure on Wednesday, but they canceled and rescheduled for today. Three sleepless nights, a week of eating a semi- liquid, high fiber diet and I'm not hemorrhoid free. It took us (my mother & I) about an hour's drive to get to the doctor's office. We even brought my Hoyer lift along for the ride, in preparation for the visit.

The surgeon sat with me first in her office, for a consultation. I described my normal bowel regime, and told her about my daily bouts of autonomic dysreflexia, about my mystery chest pains, and about my (and my physiatrist & regular physician's) theory of how my hemorrhoids could be contributing to, and/or causing most of my symptoms. She agreed that it could very likely be the case, and said she would need to examine me. So me, my mom & an assistant followed her into an examination room. The three of them used my lift to get me onto the table, and rolled me on my side, for the doctor to examine me (I was smart and wore a skirt- for easy access). She poked around (literally) for a few moments and then said we could talk about options.

The exam itself, wasn't so bad. It was just the mild discomfort of pins, and needles and goosebumps, that I typically get with digital stimulation. Luckily, it didn't last more than a few seconds. She confirmed the presence of hemorrhoids, but said we should discuss pros and cons, before deciding on surgery. I had assumed (based on what my physiatrist had told me, and from my phone conversation with the receptionist) that I was going to have the surgery today, during my visit. The doctor explained that normally the surgery would take place in the hospital, and I'd need to schedule a separate appointment, if that's what I decided I wanted to do.

The assistant and my mom helped to put me back in my chair, and the doctor told me her assessment. She said that the hemorrhoids I have internally are normal, given my situation and the typical flaccidness present with my type of injury. She said that given the fact that I have to have a bowel regimen, and digital stimulation, that those internal hemorrhoids would be expected. She said since my colon wasn't prolapsed, and the external hemorrhoids I have are small "tissue flaps" she wouldn't recommend surgery.

She said that I had several options to try and combat the AD. First, she said the external hemorrhoids were minor and not typically painful (my mother & other people I've talked to that have them tend to disagree on that point). She said I should just continue to treat them with the creams and suppositories (Anucort) I've been using. She said one of the causes for my AD could be the fact that I need to go to the bathroom every day. She explained that once the stool moves into the colon, it could be sending my body signals (even though I don't feel the actual "urge" to have to go). She said that I could try going back to doing my bowel program every day. That of course, I answered with an absolute, "No way!" Secondly, she suggested I could try experimenting with my bowel program medications. She said since I'm taking Senekot daily, that it helping to push the stool down more regularly. Of course, the risk with only taking my Senekot every other day, is that I could potentially become constipated. It's a risky, but more favorable option to try.

The third thing she suggested was switching from using the magic bullet suppository, to an enema based bowel routine. This is one option my physiatrist also suggested. The surgeon didn't specify a product, however my physiatrist did. I mentioned the Enmeez mini-enemas in my last blog, and got quite a bit of feedback about the product, from other quadriplegic users, on the Care Cure and CDRF forums. The overall consensus of people that responded (about a dozen) said that they preferred the "Enmeez Plus" (which has an added numbing agent) to the magic bullet, and that once their bodies acclimated to using it, they did have effective results, with less AD symptoms. It even specifies reduction of AD on the packaging, as being one of the benefits. The only "catch" to using the Enmeez, is that I would need to allow for time for my body to get used to the new method. Several people warned that it took them multiple uses, before they started seeing consistent results. That means, I'd have a period of unsuccessful BP days, which could entail lots of additional digital stimulation needed, and the threat of having accidents.

The fourth thing she suggested was trying a new medication called "Vasculera", which is an FDA approved "medical food for the dietary management of the metabolic processes of chronic venous insufficiency, one of the underlying causes of hemorrhoids." She said she wasn't sure how expensive it was, of if insurance (Medicaid/Medicare) would cover it, but gave me one sample and a coupon to try it. She said it doesn't have any known adverse side effects, and it could help the decrease the AD a bit. That was her most appealing and easiest suggestion.

Her last suggested option was getting a colostomy. She said, since I hated having BP so much that I should consider it. I gave her my long laundry list of reasons as to why it is not something I'd consider (see previous blogs). She poopooed (no pun intended- ok maybe intended) each of my reasons, as if they were no big deal. She went on to tell me about several patients she had performed colostomies on, and proceeded to show me several different bag styles. She said of all her patients, only one women ended up hating hers and asked for it to be reversed. Again, I stressed the fact that I'd still need to get the mucous buildup digitally removed. She said not necessarily. I pointed out the fact that I didn't want to be able to pass gas through two openings. She fluffed that fact off, saying it hardly happens.

She then continued to go on, and on how "since you have some arm function, you might even be able to apply, or remove peel and stick style bags yourself- if you had the right help." She rummaged through her cabinet to find an example. I pointed out that I have no wrist, hand or finger control or movement. She replied, "yes, but with adaptive equipment and the right help (perhaps a good occupational therapist) you might be able to do some of the care yourself." By that point, I was getting frustrated and had heard enough.

I just don't get some doctors (or people in general). Can someone please explain to me, what is the f*%#ing point of going through the trouble of having SOMEONE else strap on an adaptive handcuff, so I can "maybe" tear off a bag of my own feces, only to then need that same person to then have to hand me a clean bag, that I can "maybe" reattach to ANOTHER ARTIFICIAL hole in the side of my body?! Number one, who the f&$# am I supposed be fooling; myself or my "assistant"? I'd still need help with every step of the process, down to the fact that someone else would need to strap the damn adaptive device to my hand. Number two, someone else would still be smelling and cleaning up after MY poop! What is the point of going through five extra steps, to have to have help with each step. Only a deluded person would call that "independence" or "self sufficient." It's a damn joke! It's like saying "I can feed myself." Sure, if someone else prepares my food, puts in n a plate, cuts in up, puts my adaptive hand cuff with fork on my wrist, sits me at a table, puts a plate guard on my plate, and places said plate in front on me; then, and only then, I can pierce the food with fork and get it into my mouth. In the time it takes to set up that ridiculous charade my foods cold, and I could've easily been fed, and finished eating.

I tried really hard to keep my cool. I did mention the fact that I'd still need assistance. No matter how you slice it, colostomy or BP I need other people involved in handling my feces. How hard is that to comprehend? The whole point, is I am a private person. I don't want other people knowing when and how I poop; or urinate for that matter. I'm sick and tired of needing people for every tiny, minuscule detail of my daily life. I'm fed up with having people in my face, touching me, invading my personal space. I don't want to be fed, clothed, bathed, poked, prodded and everything else in-between. I just want a NORMAL life, of independence and privacy. Paralysis FORCES me to accept help and I hate it! I'm especially tired of hearing about how other people live this way. Yeah, and you know what? A good majority of them are as tired, and disgusted as I am. We are stuck, with limited choices. It's take it or leave it. I'm very close to leaving it.

Like I've said a million times before, "live a few days in my shoes, and then get back to me, on how I SHOULD live, and what I SHOULD do." Until you manage to do that (by the way, I wouldn't seriously wish my condition on my worst enemy), please spare me your critiques and judgement. In the meantime, I'm going to try the Vasculera and discuss the Enmeez with my one nurse. I just lost two of my regular nurses for most of July and August. My BP schedule for July is still half empty, so I'm hesitant to start a completely new regimen. I think I might wait until I know I'm going to have a consistent schedule, with nurses I trust.

I did ask the surgeon about the bentyl (for my IBS) my physiatrist suggested. I had mentioned it to my regular physician this past Tuesday, and he said it could cause constipation. He advised I wait until I go see the GI. I called the GI I saw back in November (in the hospital), to schedule an endoscopy, but he no longer accepts Medcaid/Medicare. So I have to find someone new to see. The surgeon said she wouldn't recommend bentyl, saying she didn't think it was effective. So I'll have to wait and see about any suggestions for the IBS until I follow up with the GI.

Related links-
1. http://www.gastroendonews.com/ViewArticle.aspx?d=FDA%2BUpdate%2B%26amp%3B%2BProduct%2BNews&d_id=183&i=March%2B2011&i_id=715&a_id=16840

2. http://www.enemeez.com/ct/store/productInfo_mini_plus.asp

- Posted using BlogPress from my iPad

Foolish Girl

2011-06-27T00:22:00.002-04:00

Innocent dreams, of a foolish girl
Blinded by a false sense of security
No control, no planning could ever make it be

One mistake, shattered lives
Body broken, beyond repair
Life forever changed, thrown into despair

Dreams disintegrate before my eyes
All I can do is lay and cry
Losing everything I've loved; what was once mine is gone

Can't repair the damage done
No matter how hard I try, how loud I scream
Life is harsh, cruel, and mean

I'm left inside a broken shell
Forced to live within my personal hell
Wishing I would wake from this nightmarish spell

My life is not a dream
Every day I'm faced with harsh realities
All I want to do is run

Devoid of joy, of hope, of fun
Surrounded by everything I want, so out of reach
Imprisoned in this lonely keep

Deprived of touch, of warmth and affection
Living has become it's own infliction
Every day, harder than the day before

I can't take this pain anymore
I long for everlasting sleep
I just want to be at peace

- Posted using BlogPress from my iPad

Haiku: Death

2011-06-25T01:28:00.003-04:00

Death is calling me
I long for its endless sleep
To breath my last breath

Wishing to be free
Tired of this misery
Take me to heaven

God, be merciful
Release me from this rough life
End my suffering

I am so tired
Please don't let my eyes open
Take me in my sleep

I've suffered enough
Carry away my burdens
Ease this awful pain

Let my soul escape
I am chained to this body
Give me my freedom

Death I pray for you
I would gladly embrace you
My only savior

- Posted using BlogPress from my iPad

Looking For Feedback, Regarding BP

2011-06-21T21:30:00.002-04:00

I've been having a lot of issues, regarding my bowel program and a few other things. Today I went to Kessler, to meet with my physiatrist, in hopes of getting some answers. She gave me a few things to think about, and answered a few question.

I'm a C4/C5 complete quad, with no functional mobility. I'm hoping to connect with some other people, with similar injuries, to see if they've experienced similar problems. My main questions revolve around my BP. I've posted this on the Care Cure Forums & CDRF forums. I figured between those two sources, and my blog readers, I might be able to get some feedback, from others in my situation. It's not that I don't trust my doctor's advice, it's just that making suggestions, & actually living it, are two different things. What sounds practical on paper, isn't aways the case, in reality.

Anyway, here's what I posted:

I've been experiencing autonomic dysreflexia a lot lately (I have daily episodes-more so on BP days), and have been miserable. Two of the biggest culprits to my daily bouts of AD (sweating, chills, cold sweats, headaches, etc.) are my bowels and the fact that I have hemorrhoids. My physiatrist confirmed that my diagnosis (from before my accident) of having irritable bowel syndrome, CAN still be creating pain, and discomfort I don't feel, however my body interprets as AD. She said even though I have a neurogenic bowel and bladder, the IBS might be creating a lot of my AD. In terms of the chest pain I get, that we haven't been able to determine a cause for, she suspects it's GI related (however did say there is also a chance it's nerve pain). She recommended I follow up with a gastroenterologist to discuss getting an endoscopy, and also recommended I try taking bentyl for the IBS. She suggested I have the hemorrhoids surgically removed, as they can definitely cause AD. She also wants me to get a urodynamics test done, and spoke to my urologist.

The other thing she discussed with me is my bowel program. I absolutely HATE having to do it. It is both physically, and emotionally taxing on me. However, my only other "option" is getting a colostomy, and I absolutely refuse to do that.

Anyway, the bowel program is very uncomfortable for me, and creates A LOT of AD symptoms for me. I described to my physiatrist how we've been doing my BP (using the dibucaine ointment, with magic bullet suppository and digital stimulation). I explained it can take up to two hours to complete, and that the nurses have to digitally check me multiple times. Every time the nurses do the digital stimulation, it creates AD. I do my BP, every other morning, on a commode. My blood pressure is initially very low (as low as 70/50) and usually rises to normal ranges (100/60). By the time I'm finished with BP, I'm achy, have the cold sweats and very fatigued. I take my shower, and just want to rest for the remainder of the day. It almost feels like having the flu. I hate it.

My physiatrist said that my nurses should only be doing two digital stimulations (once initially & once to check if I'm finished). She said, if I require more than that, that I should consider upping my BP related medications (senakot & Colace). I know several people that have BPs and know for a fact that they also have their nurses do the digital stimulation multiple times. I'm hesitant to start messing with my medication doses, because I don't want accidents. She did say that the magic bullet suppository, although effective, is known to create AD. She suggested I try using a product called "Enmeez" and gave me a few samples. She said she had a lot of patients with AD issues that preferred using the Enmeez to magic bullets.

I know the nursing agency I use is familiar with Enmeez, because my case supervisor gave me some samples a while back. I'm VERY apprehensive about trying it, only because it is like an enema. I'm not sure how the nurses will be able to administer it, while I'm sitting on the commode, without making a huge mess on the floor. We normally put a pad down on the floor, in front of the toilet, for when the nurses check me. If I start to go, before they push me back over the toilet, it is very bothersome to me. I'm really traumatized by the process. I find having to have help going to the bathroom, humiliating and degrading. I'm so sick of BP in general. I hate needing to do the digital stimulation so often, however I'm not sure how else, we can be positive I've finished going (or if have gone adequately) without needing to do it.. I'm curious to see if the Enmeez with work better, that the way we are currently doing my BP. I'm willing to try.

I'm wondering if anyone else with a similar injury, that has to have a BP, would be willing to share their thoughts, based on their experience?

1- I've only talked to a couple of friends regarding their BP, and they said they also need to get "checked" (digitally) multiple times during their BP. I'm wondering if my doctor was wrong, in that respect.

2-I'm also curious to know if anyone has tried using the Enmeez product, instead of using a suppository, and if so how they used it (set up- on a commode, or in bed) and if they found it caused less AD?

3-I'm wondering if anyone else who has had a history of hemorrhoids, has had them surgically removed? If so, did you find a decrease in AD episodes, and did the hemorrhoids return?

4-Does anyone with a high level injury also have IBS? If so, have you tried bentyl? I've tried probiotics and the drug "pamine" (prescribed before my accident) and neither helped, or offered relief.

Any feedback would be greatly appreciated! Thanks :)

My Life Revolves Around Shit

2011-06-19T23:51:00.003-04:00

Many of you that read my blogs, know that I struggle A LOT with bathroom related issues. Thanks to my accident, I've been living as a high level (C4/C5 complete) quadriplegic, for the last six years. I have no functional mobility whatsoever, and rely on help for EVERY aspect of my daily life. To complicate matters, I have a diagnosis of having irritable bowel syndrome (IBS), since before my injury. I'm honestly not sure if my IBS is still (considering my injury has left me with a "neurogenic" bowel and bladder) contributing to my daily woes, and discomfort, but am anxious to get some answers.

My regular doctor, and doctors I've seen at the hospital, only ever postulate and hypothesize, based on my theories, and descriptions, but never seem to have clear cut answers, or definitive reasons for why I'm so uncomfortable, and sick, so often. I realize that the fact that I can no longer directly feel what's causing my symptoms, makes it difficult for my doctors to draw conclusions, or pinpoint things, but honestly I feel like the vast majority of the time, they can't give me answers because they don't understand the nature of spinal cord injuries, and its effects on the body in general. I feel like, most times my doctors are treating me, like they would the average able-bodied person, and that is why I'm not getting any answers, or finding any relief. I'm not average, and my body no longer works according to the "normal" rules of science.

My spinal cord injury has severed the connection between brain and body. The messages I do receive are messed up, mangled and chaotic. When my body experiences pain or discomfort below my injury, it responds by signaling me with autonomic dysreflexic (AD) symptoms. AD symptoms vary (headache, sweating, chills, cold sweats, tingling, phantom pain, chest pressure, muscle spasms & fevers), but on the whole, I've come to recognize them, and have a handful of common known triggers. AD episodes can be life threatening, because quite often, my body reacts to pain I can't feel, by elevating my blood pressure. The elevation in blood pressure, is what creates the secondary symptoms, like sweating, headache and chills. When I begin to feel symptomatic, I know to ask for help, to try and alleviate the cause of the pain (such as my catheter being pinched, or my clothing being wrinkled). Gone unchecked, and unresolved AD can lead to stroke and/or death.

Unfortunately, one of the biggest causes of AD for me, is my bowels. I am stuck in a vicious cycle, of never ending discomfort, and pain. My spinal cord injury, and my paralysis have made me a literal prisoner to my body, and its needs. I must eat to survive. Likewise my body must expel waste. Normally, it's not something the average person puts much thought into, or has cause for distress. For me, I feel as though I have become a slave, and prisoner to the simplest of bodily functions. There is no escaping it. It has become so troublesome and uncomfortable for me, that something that is normally simple, private, and in the back of the mind, has instead become the center for which, my life revolves around and is dictated by. It is awful.

My paralysis leaves me with so few choices, none of which are pleasant. I must eat to live; that is a given. I must go to the bathroom; that too is a given. However, nothing in my life is that simple, because I cannot do anything on my own. I need help for everything, including eating and yes, even shitting. For the past six years, I've endured having a bowel program (BP), in order to get rid of the waste I must expel, in order to keep living. It's an awful ordeal, that involves a nurse manually removing stool from body, every other morning. Since I no longer feel the sensation of needing to "go," or the ability to bring myself to the bathroom, or even the ability to "push" it out, those ordinarily natural processes must be FORCED into action.

In order for me to go to the bathroom (shit), my nurse needs to insert a suppository, and digitally stimulate my rectum into going. I'm forced into sitting, strapped to a commode for one to two hours, while my nurse manually stimulates, checks, and rechecks my colon, every ten to twenty minutes, depending on how quickly I go (depends on amount, and consistency). Although I can't feel the digital stimulation directly, it creates AD symptoms. The process is both physically, and emotionally taxing. Every time my nurse checks me, it sends a chill up my spine, creates goosebumps, sweating, and discomfort (sometimes accompanied by chest pressure and nausea). On top of which, my overall condition and constant stimulation, has created chronic hemorrhoids. Again, even though I don't feel the pain of the hemorrhoids directly, I'm positive they contribute to my daily bouts of AD.

The frequency of having a bowel program, depends on the individual. When I was initially injured, I had to have it every night (policy at the nursing home I lived at). They made me do it in bed, after my showers, laying on my side. It was disgusting, painful (for my shoulders) and I hated it. Since moving to my own place, I switched to having it done every other morning, on the commode (over my toilet). Although it has been a big improvement, being able to do it over the toilet (in the privacy of my own bathroom- as opposed to in a bed, in the same room as my roommate) and before getting showered, it is still uncomfortable, and far from ideal. Needing to have ANYONE help me in the bathroom, or with personal hygiene has been horrific, and has never gotten any easier to deal with.

Unfortunately, I don't think I could get away with having it any less than I already do. I know a couple of people (with similar injuries) that do their BP every three days. I wish I could do that. The thing is, I suffer from AD symptoms every day; having several episodes each day (sometimes the symptoms last for hours- like sweating, chest pressure and chills). I've already ruled out a million more serious possible causes, through testing (EKG, ultrasounds, CAT scans, blood work & X-rays). Ninety five percent of the time, I have someone check me for visible problems, and we come up empty. That leaves me thinking that most, if not all of my AD is caused by something to do with my lower hemisphere. I know for sure that my hemorrhoids and gas are two big culprits; neither of which I can do much about.

I wonder if my IBS still has an impact on my body. No one has been able to give me a definitive answer. I'm going to see my physiatrist on Tuesday, in hopes of getting some clear cut answers. I know when I was on my feet, I went to the bathroom every day (sometimes several times). If my colon is still spastic, it could certainly explain why I'm dysreflexic so often. That said, even if she tells me, "Yes Christina, your IBS could be creating AD and offer an explanation as to why it's been so difficult for you to regulate your BP" it doesn't really offer me any relief. I don't know exactly what I expect for my physiatrist to tell me, except if my theory is right, or wrong. Either way, I'm pretty much stuck with the situation I have. I guess I just want to hear her say (essentially) whether I'm screwed, or not, and if she has any suggestions that I haven't yet tried (doubtful).

I've tried taking probiotics to help with my IBS, and prescription medication; neither did anything. I've tried pinpointing food triggers, but am never successful. The only definite trigger for my IBS flaring up, when I was still on my feet, was anxiety. I can't say that I've noticed a definitive correlation, since my injury. Given my condition, and everything I have to deal with on a daily basis, I'm pretty much ALWAYS under a high amount of stress and anxiety. Not to mention, my AD has seemingly gotten worse, and more frequent, as time has gone on. I would've thought if stress and anxiety alone were the causes, I would've had more issues when I was newly injured.

That leaves me thinking that my body has gotten to the point where it wants to "go" every day, and that's why my AD has gotten to be so unbearable. If that's the case, it would also account for why I have occasional "accidents", despite successful having BP (or why it's often hard to regulate at all-despite taking consistent bowel related medication and eating healthy). As it is, I've already had DOZENS of nurses have to help me with BP, over the past six years. Every time I lose a nurse and have to train a new one, it is stressful, and traumatic. I absolutely abhor BP, and dread it. Every other night, I'm full of anxiety and despair, knowing I have to do it the following morning. I've gotten to the point where, even if my body is demanding to go every day, I just can't handle it emotionally. This past year, I've gone through several nurses (I use an agency called Bayada- Medicare covers the sessions) due to circumstances outside of my control. In fact, tomorrow and Thursday I'll be meeting new nurses, because two of my regular nurses won't be here in July (personal reasons & vacation). That's two more people that have to see me naked, touch me and witness me going to the bathroom. I'm dreading it, and wish I could say "No! Go away and leave me alone."

Paralysis doesn't let me say "no." It doesn't leave me with many choices. I need to go to the bathroom, in order to live. I need help, in order to go to the bathroom. Knowing I'm going to be training with TWO new nurses, has just added salt to my wounds. Some people have asked me, "Why don't you just hire a private duty nurse, and not use a nursing agency?" One, my nurses technically are "private duty." The agency assigns them to my case, and Medicare covers the set three hour block of time, every other day. Two, in order for Medicare to pay for the service, it has to be done by a qualified nurse. I can't just pluck someone off the street and train them, like with my aides. A bowel program (at least in NJ) is considered to be a treatment, which involves "skilled nursing care." Having a nursing agency on my case, makes the most sense, because if a nurse quits, calls out sick, goes on vacation, moves, or has a family emergency (which have all happened to me already), there are backup nurses that are already trained. I have to have BP, regardless of my nurse's situation, therefore I can't afford not to have a backup in place. It's a necessary evil.

I have two options on the table. One, I can stick with accepting a BP: which involves nurses, which I hate which is long, which relies on a schedule, which is physically and emotionally taxing, and which is highly intrusive and invasive. Two, I can get a colostomy. I've mentioned in previous blogs why I don't want to even consider a colostomy. To me, it's not even an option worth mentioning. As much as I despise the idea of getting a colostomy, and have sworn to myself I'd never get one, the AD and BP are really wearing me down. I honestly don't know how long I can keep living this way.

Out of desperation, I decided to look even deeper (than I already have in the past) into what it would be like to get the colostomy. So many people have irritated me, by making it seem like getting one is such an "easy" decision, and better option. Sure, it's easy for OTHERS to flippantly suggest I undergo ANOTHER surgery. It's easy, when YOU aren't the one getting sliced open. It's easy when you aren't the one that will have to live every day, for THE REST of your life, with a bag of shit strapped to your side. It's easy, for the able-bodied people, who have told me about their personal experiences with having HAD (key word- their colostomies were eventually reversed- once I do it, the likelihood of going back to having a BP, is slim to none) a colostomy. It's easy for all the quads who talk about having one, that CAN TAKE CARE OF IT INDEPENDENTLY.

The more I've read about colostomies, the more I've discovered as to why, it would NOT be a better option for me. First, I would need to undergo surgery, which would require several days in the hospital, afterwards for recovery. The absolute LAST place I want to be at this point, is in the hospital. There is no guarantee that a colostomy would alleviate my AD. I'd be creating ANOTHER artificial opening in my body (in addition to my suprapubic catheter), that would need to be maintained, and could become infected. The bottom line is, I'd STILL need help with going to the bathroom. I'd need a nurse to clean the stoma, change the bags, and/or irrigate it. No matter what I do, someone else has to handle, and clean up after MY shit. It's not like the colostomy would care for itself.

As much as I hate BP, at least it's over and done with, in a set amount of time. Yes, I do occasionally have episodes of incontinence. However, from what I've read, there is nothing to guarantee that I wouldn't have accidents with a colostomy. One, the bags can bust or leak (as I've had happen with the catheter). I'd need help cleaning that up. Two, even though they'd be re-routing my colon, mucous builds up in the rectum, and needs to be digitally removed (at least once a month- most people fail to mention, or know about this). Three, did I mention, I'd have a bag of shit strapped to me, all day, every day?! Four, some people do "cap off" their stomas and prefer not to wear bags, instead they essentially flush the stool out (similar to an enema, but through the stoma). However this only works once your body has acclimated to having the colostomy (which depends on the individual and can be effected by diet). The other catch, is that this capping off can create AD (since gas and stool build up) and also tends to lead to more frequent accidents. Even the irrigation process itself, could potentially create AD. Not to mention, like I pointed out earlier, someone else would need to be doing all of the care for me.

So basically, I'd be taking a huge gamble, with the high probability of having to deal with most of the problems that I already have with BP. Only, I'd have the added nuisance of having another artificial hole, need to get (and rely on) more medical supplies, and have another bag of bodily waste strapped to me. I'd still need to have help in that area, and have strangers in my business. There's just no avoiding that. Instead of being embarrassed about wearing Depends, I'll be embarrassed by the bag. Oh, and did I mention the added "treat" I discovered about having a colostomy?! You pass gas out of your side, in addition to your ass. Lovely! Double the embarrassment, lack of control and shame. Thanks, but no thanks. It looks like I'm stuck with BP.

So Much For My "Good" Day

2011-06-08T01:22:00.003-04:00

This morning I had to shlep up to Newark (an hour drive- and very bad neighborhood), with my mom, to go get my psychiatric evaluation done. Luckily, we didn't hit any rush hour traffic, or get lost on the way. We even got a great parking space, and the facility was very wheel chair accessible. Despite hating getting up early, and the long drive, I'm grateful to Jeanne (the palliative care consultant I've been talking with, for several months now) for referring me to Dr. Shihabuddin. She is not only already affiliated with the VNA, but she also accepts Medicare and has experience working with hospice patients.

Our meeting went very well. She was very objective, and made me feel justified, and validated my reasons, for feeling the way I do. She said she would certainly declare me "mentally competent," which is crucial. That ensures my advanced directive, and DNR will be upheld, and respected, without contention. She also said she did not feel I was clinically depressed. She agreed with me, that my issues are issues of conviction, that they are directly related to my physical condition, and my personal standards for quality of living. It felt so good to hear those words. I just wanted to hug her! Thank you, God, someone who can see my situation, with unbiased eyes, and give me a logical, rational validation. I'm not crazy, nor depressed.

That said, she fully acknowledged the difficulties of my situation. She understands my exhaustion, and frustration, but also my deep care, concern, and worry for those closest to me; my mom especially. She and I discussed the medical implications, of refusing various levels of treatment, and she gave me several medical recommendations, in terms of my medication, and hospice care (if/when I need it). She also took the time, to include mom in the dialog, and explained her diagnostic evaluation to mom, stating that my issues are a matter principle, and influenced by physical suffering, not depression. She acknowledged how hard this all must be for mom, and explained that it was important I have this evaluation done, because no matter how badly I'm suffering, there will always be the concern, on the part of my doctors, that my family might try to fight my wishes, or sue after my demise. Mom said although it makes her terribly sad, to think about losing me, she would respect my choices. I already knew that, but I felt relieved after our meeting.

Emotionally, it was a rough morning, but productive, and necessary. I am at peace with my decision, to no longer wish to be hospitalized, or take antibiotics. I'm tired of fighting. I feel like if I get sick, my body will either fight it, or it won't. If I'm "meant" to live, I will, as long as I possibly can. Like I explained to my mom, and Dr. Shihabuddin, ideally I will get sick, and that will be out of my control. Whether to treat it, or not, is a mute point, for me. I rather not have to resort to refusing food/water, to hasten my own death, but if I get sick, I'm hopping on the train out of here. I'm satisfied with what I've accomplished, given my situation, and I'm tired of being sick. I feel like I've had one foot in the grave, for six years now. I've been cheating death, through medicine, and unnatural, painful treatments, for the sake of my loved ones, and at a terrible emotional and physical price. Dr. Shihabuddin recognized the fact (I'm grateful) that living for the sake of others, sacrificing my own happiness, and against my will, can not be sustained forever. When the time comes, that I can't bear this life another day, I'm ready to go.

After leaving Newark, I decided I wanted to go clothes shopping. I had thought about buying a few new things for the summer, the other night, but decided against it. Shopping for clothes online is tough, cause women's clothing sizes are so inconsistent. I have clothes in my wardrobe ranging from extra small, to large. Many times I end up having to send things back, and forth through the mail. I figured, since it was still early in the day, and I was feeling relatively comfortable, we might as well swing by "Mandee's" on the way home.

The store is a favorite of mine, and close by my old apartment. As usual, it was bittersweet, being in my old stomping grounds. I always feel a twinge of pain, rolling into a place, I once walked in. Before my accident, I was making good money, with minimal bills. I was definitely a bit of a shopaholic (no debt though), and clothes have always been a weakness. I used to hit Mandee's once every couple of months. I'd spend hours, trying on STACKS of outfits. I can remember walking back to the dressing rooms, my arms so full of clothes, I could barely cary it all. I loved dressing up, and buying new clothes.

My wardrobe is still pretty much busting at the seams (no pun intended), despite giving away bags, and bags full of my "pre-accident" clothes, that I can no longer wear (short skirts, shorts, bathing suits, short dresses, etc), or have no occasion to (business suits, cocktail dresses, clubbing clothes, etc). I've given away countless pairs of jeans, high heel shoes, skirts, you name it. Most of my wardrobe now, consists of easy to wear (and put on me) casual stuff, like baby doll tee shirts, and sweats, or stretch pants. I seldom go out, and have few occasions to dress up anymore. I pretty much dress the way I used to dress, to go the gym, with the rare exception to my trips outside. Even so, my draws are still over flowing, and my walk-in closet is packed.

Today was like I said, bittersweet, but also fun. No matter how awkward I might feel, being pushed around, not being able to easily access the whole store (clothing stores are always too crowded with racks, and hard to manuever in a wheelchair), or not being able to try clothes on, there is still that piece of me that enjoys it. We probably spent an hour, looking through racks of clothes, and I ended up with two new skirts, a pair of capris, six new shirts, and two new pairs of sandals. I'm officially ready for the summer; if I actually push myself to go out.

After shopping, mom and I stopped at Wendy's for lunch. I love fast food (although my stomach & hips might not agree), so it's always a welcomed treat. I try to choose small portions. It was yummy. All in all, it was a shaping up to have been a rare "good day." I don't get many of those anymore.

I should've known better, not to jinx myself. My good mood was shattered, a few hours ago, when my sister decided to open up today's mail. We had had a routine maintenance inspection, of our apartment, yesterday. Today we got a letter, citing us for a pet violation. Apparently, the complex (we live in a "luxury" apartment complex) has a "two pet" maximum, that we never realized. As it is, I have to pay $50 rent, per pet, per month. That's on top of the non-refundable $350 I had to initially shell out, for each of them.

When my ex-roommate Steve decided to move, and my backup roommate bailed out last minute, three years ago, my little sister came to my rescue, and moved in with me. She had already had a dog, Precious, from before my accident. I was more than happy, to have her join us. Shortly after they moved in, I adopted my cat Tommy. I honestly never realized there was any limit, especially given the fact that I am paying rent for them. I mean between the non-refundable fees, and monthly rent, I have more than covered for any damages they might create. The thing is, they're both well cared for, and neither of them is destructive.

When we got our second dog, Naama (mini-pin) I admittedly, didn't report her. Frankly speaking, because I'm on a fixed income, and was hoping not to have to pay another $50 per month. It has finally caught up with me, thanks to this recent inspection. I would've never adopted her, if I knew about the rule. However, now I'm totally attached to her. She's the closet thing I have to a kid. She's my baby, and I love her.

The complex sent us two conflicting letters, that have left me perplexed, and totally bummed out. One letters says, congratulations on your new dog, please register her on your lease, and that they will begin charging me, the $50 pet fee, on my upcoming statements. The other letter says, we're in violation, and must get rid of one of my pets. Naturally, I'm heartbroken.

I contacted my lawyer, to see if there were some way I could fight it, but he says they have the right to enforce it, if it's in my lease. So, I decided to resort to old fashioned begging. I wrote them a letter, admitting my error, and said I was sorry. I also explained the fact that I am quadriplegic, and practically bed bound. I told them the truth, that my pets are one of the few things that bring me joy, and comfort. I said that my animals were not destructive, and that I'd be more than willing to pay the extra fee. I pointed out the fact, that they have therapeutic value for me, and that I could ask my doctor to write something, to that effect. It is the absolute truth, that they improve my quality of life. I'm hoping and praying that whoever reads my letter, will be compassionate, and willing to make the exception.

So much for my "good" day. Now I'm going to be anxiously stressing out, until I receive their answer. If we do have to put one of the animals up for adoption, we've decided on Tommy. It makes me so sad, to think about losing him. He's such a good, unique, smart, funny cat. I really love him.

- Posted using BlogPress from my iPad

Life Is Unpredictable & Full Of Irony

2011-06-06T01:32:00.004-04:00

Today marked the six year "anniversary" of my accident. It's certainly not an anniversary worth celebrating, but one that is impossible to ever forget, or ignore. This year brought with it a twist of surprise, and added sentimental value. Six years ago, one simple mistake, would change my life forever. If my accident has taught me anything, it is how very unpredictable life can be.

This year, marks the first completion of the weekly cycle. Meaning, this is the first year, since my accident, where the date, and day it falls on, is the same as on my accident. My accident happened in the very early hours, of Sunday, June 5th, 2005. This year, June 5th, also landed on a Sunday. Last night, I couldn't help but feel an added twinge of grief, as I replayed the memories of that "fateful" Saturday night, where my life got flipped upside down. To this day, I'm unsure of the precise time of my accident, but know the first hours of that Sunday, were spent in the Emergency room, terrified of what was happening, and in shock of what I'd done. That weekend, my last hours on my feet, and my first few hours paralyzed, will forever be etched into my mind. It is a day I wish I could scrub from memory.

Ever since the moment my neck snapped, I have been replaying those last few memories, on my feet, in my head, and fantasizing how different my life might be, if I had never gone to that party, never drunk, or never dove. I have reviewed, replayed, relived, analyzed, questioned, and scrutinized every second, of that final day on my feet. I have beat myself up, and find it hard to be forgiving, to myself, for my foolish actions. I have wondered, "What if..." to a million different scenarios, and have searched in vain for reasons, or self explanations, for why I chose to do, what I did. The lists go on, and on: we should've never gone to that party, I should've never drank, I should've had more to eat, I should've waited to go swimming, I should've used the ladder, I should've never dove. Each action, seems more stupid, worse and irresponsible than the one before it. The truth is, there are no reasons, or good explanations, and even if there were, it wouldn't change the outcome.

Although I never intended to do harm to myself, or anyone, my actions that day, have caused me, and my loved ones a tremendous amount of pain and grief. The combination of many common mistakes, resulted in a gigantic disaster. One moment I was happily, enjoying a self sufficient adult life, the next I was crippled beyond saving. I went from having everything I wanted, to my worst nightmare, overnight. While my life has been the most permanently effected, my accident has had a rippling effect, on everyone that was closest to me, at the time of the accident.

My accident created a horrible strain on my relationships, with many of the people I love. The sheer magnitude of loss, the fear of the uncertain, and the reality of the irreversible nature of my injury, effected everyone I love. The Christina I was, died the day of my accident, and it's been a very bumpy rode, living a completely new reality, being a completely new person. My accident has changed the way I can interact with the people I love, and has forced limitations on what I can do, and how much of a role I can play, in the lives of my family and friends. I've had to come to terms with my new life, and they've had to come to terms with the new me.

My family and friends have at times been my biggest obstacle, while at other times my biggest supporters. I have had many fights, falling outs, and disagreements, with the people closest to me. Thankfully, most of my relationships have stood the test of time, and have whethered this storm, called paralysis. Most of my loved ones have stayed right along side me, through laughs and tears, through thick and through thin. Although they might not all get along with one another, or see eye to eye, they have put aside their differences and rallied behind me. I am so grateful for my family and friends. I feel so blessed, to have so many people that love, and support me.

The rode has been especially difficult, these last couple of years, and I know for sure, I'd be long dead, if it were not for the many loving hands and hearts, that prop me up, and give me strength. There are a few people, that I have lost through this all, and for them, all I can say is sorry. I wish I knew a way to fix my mistakes, or how to repay them. It makes me sad, to think I am missing out, on being a part of their lives, and vice versa. All I can do, is try my best, with whatever time I have left.

2,190 days ago, I thought by now I'd be married to Jimmy, we'd have a couple of kids and I'd be a veteran teacher. I never thought for a moment, that life could throw me a curve ball, or that life would not fall into place, like I had planned. I thought I'd be healthy, and able to care for myself, until I was old and grey. The future seemed brighter than ever, and full of a million possibilities. I was the happiest I had ever been.

2,191 days ago, my entire life was crumbling in front of me, and my future was terrifyingly uncertain. I was newly paralyzed. I was vulnerable and scared. I was in and out of consciousness, and on the verge of death. I knew I might lose everything. I was in tremendous pain, and utter shock. I couldn't imagine a worse situation, a worse moment. I prayed with all my being, that somehow things would be ok. My loved ones were fighting, blaming, and fracturing. I didn't know who to turn to, or what to do.

Today, was not how ever imagined it to be; not during my best, or worst days. I spent the day with Jimmy, my exboyfriend. It was bittersweet, and strangely ironic, spending today with him. It was a mix of extreme high, and extreme low emotions, for both of us, as we remembered a day that changed both our lives, forever. Although we are no longer together, we will always love each other, and share a special bond. He is still one of my closest, dearest friends, with whom I feel I can be most open. He is the one that saved my life, that night, and pulled me from the water. Even though we split (romantically) months after my accident, we have been perpetually drawn back to one another, over these past six years. My accident has changed us both in profound ways, but despite everything, we share a bond, unlike any other.

Six years ago, I had bought him a birthday cake, that we had planned to share together, that coming Monday (6/6/2005), in celebration of his twenty third birthday. Those plans, like so many others, were ruined, and never came to fruition, because of my accident. I have always felt like my accident stained his birthday, with such a horrible memory. I have always wished things could've turned out differently for us, and that we would be able to share a happy memory, for his birthday. Today that wish came true.

Although today was not the ideal day, of how I wished to be spending Jimmy's birthday, I was thankful nonetheless. I feel blessed to have him back in my life, even if it's just as friends. Of course, I'll always wish for more; for both of us. However, I've come to accept my reality, for what it is, and know no amount of wishing can make it be, what I want it to be. I tried my best to enjoy our time together, despite my longings, and limitations. I tried to savor what I could, and be glad to have sitting beside me.

I don't know what the future holds for me, for Jimmy, or "us" for that matter. I gave up trying to predict the future a long time ago. All I know is that, despite my cold sweats, and relentless chills, I was able to have a few laughs, and enjoy seeing his smile. It felt good, taking a bite into a piece of his birthday cake, and for as much as it stung, to not be able to do everything I wished we could be doing, I am so glad we spent today together. Today was a day of closure, and an opportunity to create a positive memory. I hope we can make a few more happy memories together, before this life is over.

- Posted using BlogPress from my iPad

Why I Think I Should Be Allowed To Die With Dignity

2011-05-31T23:25:00.002-04:00

For those of you that read my blog regularly, thank you. As you know, in my previous blog, I discussed the HBO documentary, "How To Die In Oregon." As you also know, I'm a firm supporter of the right to die, and advocate for patient's rights to determine his/her own quality of life. I commend the citizens of Oregon, Washington, and Montana for being objective, and legalizing physician assisted deaths. I think it should be legalized in every state.

A special thanks to Nancy, for reading my previous blog and giving your feedback. Thank you so much for your response! I was so touched by your love, commitment and dedication, to your husband. I commend you, and thank you, for helping to raise awareness to this subject. Watching the documentary, really struck a chord inside of me. This is an issue on my mind daily, and very near to my heart. Your comments have given me food for thought. They have also left me with the need to respond, to your thoughts on paralysis and how it would, or wouldn't qualify someone for a physician assisted death. I would like to respectfully disagree, in my case, and here's why:

I'd like to take this opportunity to clarify my own beliefs, on euthanasia and explain why I feel I too, deserve the right to die with dignity. I hope everyone can read my arguments with an open mind. Keep in mind, my reasoning and arguments are not meant to offend, or necessarily aimed at any particular individual. I'm just stating my beliefs and thoughts, about my situation, and continuing the dialogue that was started in my previous blog. I'm not mad, or offended by any comments made to me. I would just like to expand on what I've already stated, and explain why I feel a law like, Oregon's "Death With Dignity Act" should apply to my case, in particular.

First off, it is very easy to dish out lofty advice, when you are not the one facing harsh realities, extreme physical limitations, and chronic physical suffering. I for one, am sick and tired of able bodied people, who can enjoy the simple luxuries of being able to do things, like cleaning their own bottoms, and blowing their own noses, tell me how I should live my life, and why I should continue to suffer. I'm tired of hearing the word depression, being used as scapegoat, to ignore, or excuse the real medical, and physical trials I must endure every day. I don't ever get a break, or a time out. I don't have many choices, or options. It's "this is what you must do to survive, with a high level spinal cord injury," or I let nature run it's course, and I die. Those are MY only two options.

Unless you've been in my shoes, I have a hard time absorbing any justifications, or reasonings as to why I MUST, or SHOULD continue to suffer. I'm not just referring to "quadriplegics" in general. I'm talking about women, with high level complete spinal cord injuries, that are in their thirties, that were injured in their twenties, that have no children, that lost a career, that have IBS, and that suffer from daily bouts of autonomic dysreflexia. If you are one of the few people on the planet that fit in that category, by all means, share your insight, and advice on coping with me.

If you don't belong in my boat, please save your judgement, and just take a moment to think what you might do in my situation, and how you might want to be treated. Now, imagine the last time you were sick with the flu. Remember the discomfort, dull aching, and fatigue. Now pretend someone is telling you that you are going to have that flu, that same aching, pain and fatigue for the rest of your life, every day, and that you can no longer care for yourself, indefinitely. Think of having to have dozens of people see you nude, and touch you, on a daily basis. Imagine needing to ask someone for every need; from scratching an itch, to brushing your teeth, to tying your shoes. I can guarantee you, from experience, that your worst fantasies, would not do justice, to the reality of actually living this way. I have lived on both sides of the fence, both as an able bodied adult, and as a disabled adult. I know exactly what I'm missing out on, and how much better life could be.

In regards to my situation, it is not merely the fact that I'm paralyzed, that makes me want to end my life. I'm certainly not saying that everyone who is paralyzed should want to die. My body, and it's reaction, and response to being forced into living this way, has become extremely painful, and uncomfortable. I deal with autonomic dysreflexic symptoms, on a daily basis. My tolerance for sitting is poor. I'm left feeling ill, with low grade fevers, chills, chest pressure, fatigue and cold sweats almost every day, for the past two years. Living with paralysis, and dealing with the immense magnitude of loss, was hard enough, when I was feeling decent. Feeling ill, on top of everything else, day in and day out, with no relief, and no answers, has made this life unbearable.

After seeing the film, I wrote to the state of Oregon's contact email address (http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Pages/index.aspx), to determine if I'd qualify to die, under the law. Paralysis is not a terminal "illness," but in my case (C4/C5 complete- no functional mobility) it is most certainly a terminal condition. Every day my body is forced, unnaturally, into performing functions it can no longer do on it's own. I have no ability to be self sufficient whatsoever. It is only through medical intervention (pills, bowel regime, catheter, and nursing care) that I am still alive. If I were to refuse help, I would most certainly be terminal. I find it hard to understand why the government, wouldn't, or doesn't want to recognize that fact. It has nothing to do with high level quadriplegics being worth less, or disabled people being less valuable. It's just being realistic, and stating facts. Having a high level, complete spinal cord injury is a terminal condition, without treatment. That is a fact.

I think what is important, or the larger issue at hand, is the degree of suffering an individual has to endure, given his/her medical prognosis, weighed in conjunction, against the likelihood of being "cured," or alleviating painful symptoms. In my case, my spinal cord injury has created a tremendous amount of discomfort, and pain (physically, and emotionally). Even if I were to rid myself of the depression, that I don't deny exists, to a certain extent, I am still left with chronic illness and AD symptoms, that the doctors have not been able to successfully treat, or alleviate.

When you couple the physical suffering, on top of the severe limitations, and loss that I've endured, living itself becomes unbearable. Not to mention the treatments that paralysis forces on me. Under any other circumstance, in any other context, my bowel program alone, would be considered torture. I don't really have a choice. My body no longer functions properly. In order for my body to get rid of the waste that my body produces, a nurse needs to manualy stimulate my sphincter muscle, through use of suppositories, and manual stimulation. I was never asked if this was ok. Life with paralysis forced it upon me. I either accept it, or die from impaction, and sepsis. Just as people in Oregon, and Washingon have the right, to say they don't want to have to be cared for, neither do I. I could get a colostomy, but I feel like that is just another unnatural treatment, and do not want it. Personally, I don't think it's right for others to insist I do these things, or expect me to suffer.

I've been seriously considering exercising my right to refuse food/water, as a means to end my suffering. I have been consulting with a local palliative care consultant, but want to thoroughly investigate all options, so I can have to peace of mind, of knowing I'm making the most informed decision possible. Realistically, being a NJ resident, refusing treatment is my only legal option, to hasten my own death. The palliative consultant I've been speaking with seems confident, that I would be able to receive hospice care (to help provide comfort) and that death by starvation/ dehydration would be relatively comfortable, and peaceful for me.

In order for me to get hospice care, my doctor would need to diagnose me as being terminal. We have already discussed this. Once I decide to refuse food/water, I would technically be considered terminal. In just so happens that a man I knew from rehab (who was injured in a motorcycle accident, and sustained a similar injury) who chose to exercise his right to refuse food/water, about a year after our accidents, and died "peacefully" surrounded by family, and the support of hospice. Although it's possible, my doctors and case manager are hesitant. They are both requiring I have a psychiatric evaluation done. I need to be declared mentally competent, before they are willing to give me the terminal diagnosis. I've been in close contact with my lawyer, throughout my fact finding process. I also created a living will, appointing my sisters as health care proxies and created a DNR order. I realize the intricacies and the legal implications, that my decision to refuse food/water would have. I'm confident, that if/when I have had enough of suffering, and have reached my limit, that this is my only alternative, and that it will successfully result in my death.

I know if/when I decide to do this, it will be extremely difficult for my loved ones to witness. I'm trying to do as much fact finding as possible, in hopes of subsiding my own fears, and providing some sort of comfort to them. Death by starvation/dehydration, is my only realistic option, if I stay living in NJ. I've read many articles about this topic, and am frustrated by the strong contrast in the information I've found. Half describe, a rather peaceful, euphoric, slipping away, while the other half tell horror stories of week long, painful, drawn out deaths. Of everything I've read, they almost all discuss very old, very ill people. I'm young (30) and "relatively healthy" (I find that description humorous, given my total lack of control, or sensation of 85% of my body, and total reliance on people, medications & treatments). God, religion, and philosophy aside, I feel like refusing help, would be allowing nature to run it's course. Naturally, I'd prefer to be miraculously cured, or at the very least to be given the right to die with dignity, but my reality is most likely I won't have either option.

I feel like I'm a prisoner, within my own flesh, and am being kept live, by unnatural means. This debate boils down to the issue of quality of life. No matter how you slice it, my paralysis, and my physiology have sentenced me to having a very low quality of life. I feel strongly that if I did live in Oregon, my case should qualify for DWD. I'm curious to see what they write back. I know for a fact that people in my similar condition have applied to Dignitas, in Switzerland, and have been granted the right to die. I wish the United States was as open minded, and compassionate as the Swiss government. If I were Swedish, I would've certainly ended my own suffering at least a year ago. Despite having loving friends, and family, I'm at a point where every day I'm alive has come to feel like a punishment.

- Posted using BlogPress from my iPad

"How To Die In Oregon"

2011-05-31T01:00:00.004-04:00

I just watched the HBO documentary, "How To Die In Oregon." It is a film about the debate, over whether or not people in the United States should have the right to "die with dignity," through physician assisted deaths. The documentary crew follows the lives, and deaths of several individuals, and their families. It presents clear arguments for why the right should be given to every citizen, and gives a very intimate view into the lives, and decision making process of the people involved, and what the process is like, in the state of Oregon. It also discusses opposing views, and the struggle involved, in getting legislation, like that in Oregon, passed in Washington.

One of the people the documentary follows, is a woman named Nancy. Nancy's husband had passed away, from cancer in his brain and spinal cord. At the time he was diagnosed with the illness (around 2006 I think), they were both Washington state residents. There was not much that doctors could do for him, in terms of treatment, and his prognosis was very grave. The disease progressed rapidly, and he lost his ability to care for himself. He suffered horribly, both physically and mentally, due to his degenerative condition, and his loss of freedom, and independence. He hated needing to be cared or, and wanted a peaceful, dignified death. At the time however, physician assisted suicide was illegal in his home state. He inquired about moving to Oregon, because he knew it was legal there, but his doctors told him he wouldn't be alive long enough to be able to establish residency there, or be able to give himself the lethal dose of medicine. He resigned himself to staying in his state. His wife Nancy described his final days being filled with pain, and suffering. One of his dying wishes, to her, was to work towards making physician assisted death legal in Washington, so that others wouldn't have to suffer the same way.

Nancy worked tirelessly, volunteering to speak, giving interviews, and making phone calls, to share her husband's story with the public, and to help raise awareness, and support, for the "Death With Dignity Act," which eventually passed, and was instituted in Washington, in 2008. During one of the many speaking engagements the documentary chronicles, the interviewer asked Nancy something to the effect of, "Death with dignity, the other side would call it assisted suicide. Is it assisted suicide?" She replied, "No. It's offense to me, to call it a suicide. Suicide is something someone does, who is otherwise physically healthy, and has their life ahead of them, but is clinically depressed and does not want to live." In another segment, she explains to a crowd of people, that although she and her husband were both raised Catholic, he (and obviously she agrees) didn't think it was right for the government, or any religious leader, to dictate how much someone should have to suffer. I agree with her opinions, whole heartedly.

The documentary discusses the Hippocratic oath, that doctors take, to "do no harm," and presents arguments from both sides. The film is clearly "pro" euthanasia rights, however it does offer examples, and give and take dialogue, from both sides of the issue. Some of the opponents to physician assisted death, claim that enacting such laws, is essentially giving the government the power to classify who is "fit" to live, versus those whose care might seem otherwise burdensome, or costly. I think this line of thinking is completely misguided. No one is saying "everyone with such, and such diagnosis, should be euthanized."

Giving citizens a dignified alternative, to assured suffering, has nothing to do with placing judgement on individuals. Everyone should have the right to determine what he/she considers to be a worthwhile life. Not everyone with a terminal diagnosis would choose to cut their life short. Not everyone that is disabled finds being dependent on others as painful, humiliating, or degrading. Everyone has their own unique threshold for suffering, and what he/she might classify as a life worth living. The point is, those people who do have a terminal illness, or incurable chronic illness, should have the right to determine when they've suffered enough. We as society, as loving, compassionate citizens, should recognize that in some cases, there are no medical answers or relief to suffering, but death itself. We should not demonize people for not wanting to suffer, or doctors for wanting to help ease someone's suffering.

If doctors have no methods to ease someone's physical illness, and that person is guaranteed to have a future filled with crippling limitations, lack of independence and/or physical suffering, than in my opinion, it is DOING HARM, not to offer a peaceful alternative. It is not right to say, you must suffer, because we can't help you. If death is a certainty, why prolong the suffering, and poor quality of life?

The documentary shows a man named Randy, dying from prostate cancer. In the film, he talks about his outrage over receiving a denial letter for more chemotherapy. Randy had already had several doses, but the treatments had been ineffective. He was too poor to pay for the treatments out of pocket, and the state of Oregon was refusing to pay for more treatments, because based on his diagnosis they felt that further treatments would only be futile (aka a waste of tax payer money), and were only offering him palliative, or "comfort care." He showed the rejection letter, which outlined the comfort care measures, that he COULD qualify for, given his condition. In the list, was the option of physician assisted death. He was completely irate, accusing Oregon of "putting a price on his life", and felt as though he was being pressured into dying. After going public with his story, the state agreed to pay for more radiation treatments. Despite treatment, he died a month later.

Giving people options, is totally different than imposing something on people. I don't think Oregon was wrong for denying Randy treatment. Some cases are lost causes. I receive all my medical benefits through the government, (Medicare and Medicaid) and believe whole heartedly that the government has the right to approve, or deny treatment, if they have clear evidence that it is unnecessary. As it is, there is a ton of price gauging, abuse of the system, and wasted money.

A perfect example, in my life, is receiving physical therapy. Due to my injury (C4/C5 complete), I was left completely paralyzed, with no hope of recovering any sensation, or functional ability, below my injury level. Directly after my accident, I received three months of inpatient acute, physical and occupational rehabilitation, and then six months of outpatient subacute rehab. For the first year and a half, after my accident I lived in and out of the hospital, and nursing facilities. During my stay in the nursing home, I received PT/OT five days a week (about a half hour of range of motion stretches, and exercises, done with the assistance of a physical therapist). Once I moved out, into my own apartment, the state paid to have a PT/OT therapist come to my home and teach my aides how to do range of motion exercises. I have been living here for over four years, and have only had PT/OT come to my home twice. The government will not approve me for outpatient PT/OT, because they feel, based on my diagnosis, anyone can be trained to do simple range of motion exercise with me. My prognosis, does not include "getting better," or regaining mobility, therefore they are justified in not wanting to pay for services that would be a waste of time and money. It doesn't make me angry. It makes sense.

I WISH I had a peaceful alternative to end this life. I don't think Oregon officials were wrong for denying the man in the film treatment. Clearly, he was terminally ill. Offering him the OPTION of a physician assisted death, was just that; an option. He had every right, not to exercise his right to die. In his opinion, his life was worth fighting for. That's all well and good, but there are cases where treatment is futile. If the tax payers are footing the bill, the government has the right to say whether or not they are going to pay. If you can afford it, and feel extra treatments are worth the cost,and risk, than more power to you. No one should tell you how you spend your own money (taxes & benefits aside). Just as, no one should force suffering upon others.

I HATE the life that my paralysis has forced onto me. I do not think it's right, or humane, to force me to live this way. If I lived in Oregon, or Washington, I would most certainly exercise the right to die with dignity. I'm not sure if I'd qualify, because I can't technically administer the medicine to myself. I'm a little fuzzy on the law, even after watching the film. They clearly point out that such legislation is feasible, because the patient is giving themselves the medicine, versus a doctor giving a lethal injection. However, everyone in the film, clearly had other people prepare the mixture, and help them. All they had to do was physically be able to ingest the concoction, by mouth. I could do that, but am unsure if my situation would be approved.

Most of society, and my loved ones don't like to admit the fact that paralysis (at high, complete levels- such as mine) is no different than a terminal illness. I have absolutely no means of self sufficiency. I am FORCED into accepting help for EVERY aspect of normal, daily life: to eat, go to the bathroom, dress, bathe, etc. I have two options: accept help and prolong my life, and therefore my own suffering, or reject help, and suffer a long drawn out, painful death. That is an incredibly harsh, cruel position to be in.

I'm not saying everyone with a spinal cord injury, or paralysis should want to die, or that they should be euthanized. All I'm saying is that each case should be judged based on the individual, and his/her own definition of what is a quality life. There should be an alternative, peaceful way to end someone's suffering. The choice, and decision to exercise that option, should be left to the individual. Not everyone will choose to die.

I for one, would welcome a peaceful option. For me, being completely paralyzed has been hell on earth. I absolutely detest needing help, and having no privacy. My physiology, (having IBS) has complicated my situation, and creates a lot of pain, and discomfort. I'm forced into taking dozens of pills, and into enduring horrible treatments (like bowel program-where a nurse needs to manually stimulate my body into evacuating stool), that create as much discomfort as they alleviate, if not more. There is no cure in sight for me, and very little that doctors can do to get rid of the autonomic dysreflexia, I deal with on a daily basis. My tolerance for sitting is poor, and I'm left practically bed bound. I am literally a prisoner within my own body. Right now, my only means of ending my suffering, is to reject the help that is given to me every day. Rejecting help will ensure my death 100%, because I can not feed myself, or get something to drink, without assistance. I can not go to the bathroom, or clean myself. Without help, my death will be assured, in only a matter of time.

In other words, my only option of ending my suffering (which in and of itself is a certainty, given my body, and my condition) is to slowly starve myself to death, or hope to die from untreated infection. Both "options" will result in my death, but will most likely be very painful, and drawn out, and incredibly hard for my loved ones to witness. For me, the best "help" for me, would be a dignified death. I hate that I am so trapped, and so limited by the law. It pisses me off, that religious "morals" and belief systems are imposed on me, and force me to suffer. My life has come to a point, where living equates to suffering. The scale has tipped, irreversibly, to being a life of overwhelming suffering, versus overall good. I truly wish I had the right to die peacefully, and quickly. I'd take that option in a heartbeat.

The documentary also follows a woman, named Cody, who was dying from cancer in her liver. Throughout the film, it shows her with her family, and each of their perspective's about her choice to exercise her right to die. For a little while, she had a period of feeling good, and had outlived her prognosis. She knew that she had the pills, waiting for her, but she chose life. She explained that she knew she didn't HAVE to ever take the pills, if she didn't want to, but that she drew peace and comfort from knowing, that she could spare herself from eventual suffering. She knew she was going to die, either way, but she didn't want to let her illness bring her to the point where she could no longer care for herself.

Naturally, Cody's family was sad, that she was going to die, but they were also very understanding, and supportive of her decision to hasten her own death. She involved them in her thought process, and clearly outlined what SHE considered to be a quality life, and how far she was WILLING to continue to suffer. Thanks to her having the option to die with dignity, she and her loved ones were able to prepare for death, together. They were able to enjoy her last days together, and say their goodbyes to one another, while she was still relatively able to care for herself, and was able to die with pride, and grace. She was able to spare herself the suffering, of added pain and the humiliation, of needing to be cared for (I can relate to her feelings), and spare her family the cost, and the physical & emotional burdens of having to watch her suffer and have to care for her.

Some people can tolerate more pain than others. Some people don't mind being dependent. Some people aren't bothered by vanities, modesty, or pride. Everyone is different. Every case is unique. For those people, whose death is inevitable, without medical intervention, or for those of people living with incurable, painful conditions, there should be a humane alternative, to forced suffering. Giving people the right to die, is not the same as killing people. The choice should remain with the individual that is faced with the suffering. Suffering shouldn't be imposed, or expected, just because there isn't a cure, or viable treatment. We treat our pets more humanely, than we treat our fellow man. I agree with the right to die with dignity, and wish more people would open their eyes, hearts and minds. I wish more states would free their citizens from the oppression of religious beliefs, over law, and give citizens the right to decide how much/little suffering they are willing to endure, and give doctors the right to uphold their oaths, to help ease suffering; even when life itself is suffering.

- Posted using BlogPress from my iPad

"A Gradual Awakening"

2011-05-17T00:45:00.003-04:00

I just finished reading a book by Stephen Levine, called "A Gradual Awakening." It is a book about meditation, and philosophy, based on Theravada, and Zen Buddhism. It was recommended to me, by someone who reads my blogs, and is a fellow member of the "Care Cure" online community I belong to. Curiously enough, his name also happens to be Stephen, and he has been living with paralysis since the early 80's (paraplegic- due to an arteriovenous malformation). He and I correspond, from time to time, and he thought the book might offer me some insight, and comfort, with my struggles, trying to cope with life with paralysis. Luckily, it was available in e-book format, which made it easy to read (I buy books through iBooks & the Kindle app, on my iPad- it's much more convenient than reading traditional books, because I can easily switch between tasks, look up definitions, highlight important passages, and take notes).

I've read many books on meditation, since my accident, so I was already familiar with some of the book's concepts, and practical advice. My grandpa (my stepmom's dad) has been into meditation, mysticism and dream psychology (he owns an impressive collection of books by Carl Jung), for decades, and has hundreds of books in his library (mostly religious texts [of various religions], spiritual, philosophical, and psychological in basis/theory). He has practiced meditation (and prayer- his approach is from a Christian perspective) and kept dream journals, since he was in his forties. He and I spent quite a lot of time together, as I was growing up, and over the years he told me about his studies. I always viewed his studies, as an interested sceptic. I was always open to listen, and to read through books he gave me (more so, since my accident- before I was often busy, and did, or could not make time).

I have always found religion, philosophy, and psychology to be fascinating subjects, worth investigating, pondering, debating, and questioning. Eastern philosophy, in particular has always been appealing to me, and something I have found myself drawn to, time and again, throughout my life. My fascination, for Asian art, philosophy, and culture, started with my discovery of anime (with Sailor Moon- sophomore year of high school- in 1995), and blossomed into a genuine love, and passion to study many facets of Japanese, art and culture, in particular.

In college, I took an "Art of Japan" course, as one of my art history requirements. It was through that course, that I began a serious study of Buddhist art, and philosophy. As with every art history course, I've ever taken, religion played an integral role, in the inspiration, and creation, of much of the artwork I studied. I can remember having to study, and being able to identify hundreds of varying Buddhist statues, and paintings. I learned how to "read" the symbology present (posture, hair knots, drooping earlobes, lotus flowers, etc.) in varying types, and styles of Buddhist art, and about the principles, and philosophy behind such things as, Zen ink paintings, sand mandalas, rock gardens, and tea ceremonies. I especially fell in love with Ukiyo-e wood cut prints, and can remember spending hours at the M.E.T. looking at them, and using their library to write a paper about Ukiyo-e's influence on the post impressionistic movement.

In the years right before my accident, I used to go into NYC monthly. I would sometimes spend all day, getting lost in the Asian, and Egyptian wings of the M.E.T., looking at the artwork, and making sketches. I would take trips down to Chinatown, and spend all day (in the summer and on weekends) browsing in, and out of tea shops, and buying all sorts of Asian style accessories, clothes, figurines and nick knacks. Over the years, I've amassed quite a collection of both traditional and contemporary Asian books, and art. Not to mention, my over the top collection, of hundreds of anime DVDs and Blue-ray disks (I'm an otaku, in every sense of the word). To this day, my apartment is filled with Buddhist iconography, and Asian artwork, and inspiration.

It was no surprise to me, that I'd enjoy, or be drawn towards the teachings, in "A Gradual Awakening." Like I said, it's not the first book I've read on how to meditate. Most books I've read in the past have been more well rounded, in terms of offering varying religious and non-religious approaches, and offering more direct, step by step guided meditations, or contrarily, vague techniques or generic mantras. The difference in this book, is that the author focuses specifically on the teachings of Buddah himself, and offers more specific examples Zen philosophy, with a few guided, purpose based meditations. Even if you've never read about Buddhism, and/or meditation, it is simple to understand, and pretty straightforward.

Naturally, "knowing" and "doing" are two different things. While, Levine's writing style makes the concepts understandable (and approachable), it is a whole other ball of wax, to be able to apply the content, and practice the principles he describes. The book is definitely a good jumping point, to begin reflection, and offers a lot of rational, practical sense, that make the reader (namely me) want to try the theories out for himself/herself, and that can be applied to, and compliment various, existing religious beliefs, or mindsets.

In the book, Levine's (based on Buddah's teaching) overriding theme, is that the root of all suffering, is based on our (collectively) inability to be at one with the present moment. He says it is our attachment to our preconceived notion of "who" we are (as individuals), "what" WE think we should be doing, and/or "where" we should be, that interferes with our ability to be happy, and/or peaceful with our reality. He states that in order to be truly happy, to be whole, and fulfilled, we must begin by letting go of the personal "I."

According to Levine, we are all part of a bigger whole, and that through meditation, we can start to return to this natural state of feeling complete. He asserts that everyone has the innate ability to access this grander sense of truth, by honing one's concentration, through mindful meditation, and gradually awakening. He says everyone must start by focusing on the mind, as an observer, to watch thoughts, as they pass through the mind, and to begin to recognize the constant change, and flow, that is present, from moment, to moment. He warns, not to let one's self get pulled in, or get attached to any one thought, but to detach and let each moment unfold.

He briefly explains the concept of karma, as being "the perfect outcome of previous input." In other words, you sow what you reap. So, from a Buddhist standpoint, my current situation (being paralyzed) is because of some past action. From a rational, logical standpoint, anyone would agree, that my diving into a shallow pool, head first, resulted in me breaking my neck, and thus left me paralyzed. However, looking at my life, from the viewpoint of the larger picture, and the seemingly unjust nature, of how drastically one small action, has caused me so much loss, and suffering, the logical cause and effect explanation, does not seem comforting, and lacks the deeper meaning of "Why?" Levine says, that this is where karma comes into play.

From the Buddhist perspective, the karma I have in this life, can (and has been) effected by this life, as well as by actions in past lives. So, even though it might seem unfair, or unjust, for someone like me (a relatively, honest, kind, hardworking person) to have to suffer so much, for such a small mistake, it is the result of past mistakes, and it is part of a much, much bigger picture. Levine explains, like a circle, it is impossible to determine where one cause, or effect begins, or ends. He doesn't go much into reincarnation specifically, but implies, that whatever desires we have, when we die, or feelings left, unfulfilled, those grasping qualities create karma, and propel us (condition, and effect us) into our next life. Luckily, according to Levine, we each have the potential to reach "enlightenment" and stop the karmic cycle. He offers Buddah, and Jesus, as two examples of individuals who were able to attain enlightenment, through their loving, selfless, detachment, and return to their place, within the universal wholeness.

So, in my case, it makes perfect sense, to say that most (if not all) my suffering is a result of my attachments to my perceived image of myself. I feel sad, angry, and empty, because I am clinging onto the past (aka- an illusionary version on "myself") and onto an idealistic future self. Levine would assert, I am in pain, because I am not living life, in the present moment. According to him, in order for me (everyone) to find peace, I need to learn to love myself, forgive myself, practice loving kindness towards others and to live only in the present moment. He says, in order to be whole, we must let go of our egos; we must accept the present moment.

While I'll admit, the dichotomy between my "ideal" present, and my "actual" present does account for a tremendous amount of suffering, it is easier said than done, to abandon every like, dislike, preference, preconceived notion, desire, wish, dream, hope, and aspiration I've ever had, and what I believe (falsely- according to Buddah) to have been "me" as being me. From an analytically viewpoint, it makes perfect sense, that if I could let go of everything I had, and give up the dreams, and goals I had, for my future, I would be a more content person. In the book, Levine offers guided meditations, to help the reader work through the process of how to live life in the present, and ways to let go of "self."

I definitely agree with A LOT of what the book discusses, from a logical perspective. That might sound strange, given the fact the author is proposing radical ideas on being completely selfless, to the point, where the reader must choose to accept concepts of multiple lifetimes, collective consciousness, and universal oneness. I'm not sure if I'm sold on the idea of karma, to the extent of believing in past lives, or even that the present moment in my life (as I write this) as being perfect and correct, but it does make COMMON, practical sense that clinging to ideals, memories, or even hopes, IS a recipe for suffering. One undeniable truth, throughout this book, is that life changes. From the birth of this moment, to the death of the past moment, life is a continuous flow of change, of beginnings and endings, of causes and effects. The more you resist change, and fight, or try to escape the present reality, the more you hurt yourself. That is basic, powerful, truth.

While I continue to try and let go of my past, accept my reality, and work on being the best person I can be, in the given moment, it is extremely hard. Change, while difficult for everyone, is inescapable. However, most people have the luxury of being able to adapt to change gradually, as it slowly unfolds. My reality, was brutally, abruptly turned upside down, literally overnight. I had no choice but to let go (in a physical sense) of most of my acquired skills, and abilities, in the matter of minutes, because they were forcefully stolen from me, by my paralysis. Contrarily, many new, painful, realities were thrust upon me, like having to accept help (for everything), having to expose myself, needing bowel program, a catheter, and medications. Paralysis did not afford me any time, to ease into my new life, or grant me a transition period. I went from being one person, with one life, to becoming a new person, with a new life, overnight. To make matters more difficult, I have EVERY memory of my old life, and the shadow of the old "me" looming over me.

In a figurative (and literal) sense, paralysis has forced me to consciously experience my own death, and rebirth. While, it is an interesting theory, to explain this present life (my life post spinal cord injury), and my very real physical pain, and discomfort, as a product of past karma, it is not comforting. Even if I accepted the principle of karma as truth, it still doesn't give me the explanation of what actions I did, to create the karma I'm experiencing, right now. I suppose, Levine (and perhaps Buddah) would say, my past actions, and even my current situation are irrelevant, except for the opportunity my present situation affords me to grow, and learn, and of how I choose to act, from this moment forward.

The book is clearly written with the average person in mind, and not aimed at the severely disabled, or terminally ill people. He touches briefly, on dealing with physical pain, but focuses primarily on the psychological pain, and negative feelings, and attitudes, that hold people back. It has certainly given me some food for thought, and some concrete strategies, and techniques, for beginning to work on my emotional pain, and psychological wellbeing, but leaves me with many questions, about how to deal with the physical limitations, physical pain, and chronic illness that are also part of my present reality. Even if I am able to let go, of everything, including my ego, my body can't escape the physical limitations, and discomfort.

I suppose, the hope, or goal, would be that this pain, and physical suffering is only temporary, and ultimately, by becoming enlightened, I could potentially ensure that this lifetime is the last time I have to experience it. The thought of letting go of all desires, seems like an impossibility, and thus dooming me, to forever repeat my mistakes; never feeling satisfied. In this regard, the Christian, Jewish, and Muslim promise of an eternal heaven, seems much, much more appealing. Although the thought at a second chance, to experience the things I can't/couldn't in this life, sounds tempting, the thought of having to experience the drastic, abrupt change that I have had to endure, in this lifetime, has been intense enough to never, ever want to repeat it.

I'm curious to read another book Levine wrote, entitled "Healing Into Life and Death," which focuses more on situations of chronic, and terminal illness. I'll be sure to write a review, if/when I finish it.

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Meeting With Fr. Doug

2011-05-09T16:48:00.002-04:00

Well, I just met with Fr. Doug. He was very nice, and younger than I imagined. Most of the priests I knew growing up, were easily old enough to be my grandfather, or great great grandfather. We talked for about an hour and a half. I explained pretty much everything I've been thinking, and going through; lots and lots of tears. I showed him some of my still life paintings, I had laying around the apartment and gave him my card, to check out my website.

He said he could see a definite reason why God wanted me here, to use my gifts, to help others. I brought up the fact, that I feel I have been generous, and giving, but wonder how long I'm meant to keep living for the sake of others. I said, it's unfair, to hold me to the standard of Jesus, when Jesus had a clear knowledge, of his purpose, about his death, and about his resurrection. He said that's true, but that life isn't always fair. I explained that I don't blame God, for my accident, because I feel it is a product of my own freewill. He agreed, and said, although God doesn't create suffering, he can make good things happen, despite of it.

I understand, that I've been blessed with gifts, despite my severe disabilities. My gifts, of writing, and painting have helped me to cope, and teach others, about paralysis. However, the daily bouts of autonomic dysreflexia, and the grueling treatments, and degrading, embarrassing nature, of being totally dependent, makes living this way, seem so overwhelming, and often overshadows, the few positives in my life. I am thankful, to be able to express my feelings, but sometimes feel like my mind itself, is my own worst enemy. Being so trapped, with nothing but my thoughts, is often a punishment, within itself, because I'm constantly remembering what I had, what I can't have, what I miss, and what I want. The disparity between my old life, and my reality, is constantly weighing down on me, and makes it hard to be satisfied with what I've been left with.

He said I seemed to be much harder on myself, than others, and said I needed to find a way to forgive myself, for the accident. He said I had to start loving myself. I have heard those words many times, but am at a loss, at how to begin to do that. He said we're often much nicer to others, than we are to ourselves, and in my case, that's certainly true. He said God, is also more forgiving than I am, which I'm hoping is true. I know I didn't intend to hurt myself, but it was MY poor judgment, and MY action, that ultimately resulted in my injury. In many ways, I feel like a murder. I feel like the person I was, died that day, and I've been grieving for her, ever since. Paralysis has stolen almost every aspect of my old life; a life a loved.

I have lost my freedom to care for myself, my privacy, my dignity, my hopes, my dreams, my career, and the life I had built for myself. In many, many ways I lost myself. I miss the old Christina. I miss living my old life. I have no to blame, for the life paralysis had given me, but myself. How do you forgive someone that has stolen everything you loved, and held dear? How do you forgive someone that has robbed you of your health, and in turn, sentenced you, to a life a suffering? How do you forgive someone, that has robbed you of your potential, and your dreams, for the future, by placing extreme obstacles, and limitations upon you? I'm not sure if I CAN forgive myself.

Talking with Fr. Doug, did help provide me comfort, in that he said I had the right, to refuse extreme measures, like a tracheotomy, colostomy, or vent. Although, deep down, he's just a man, I felt relieved of the heavy burden, of knowing he (as a Catholic priest) recognized, that some situations are TOO much, and that God would understand, not wanting to preserve "life" to ANY and ALL extent necessary. Ever since those first few weeks, in ICU, my worst fear, has been ever having to be hooked up to a vent, again. I have a hard enough time, dealing with being reliant on people, I don't want to ever be reliant on machines again.

Fr. Doug said he thought a lot of my feelings, and dark thoughts are just depression, and suggested I reevaluate my medications. I said, I'd be open to trying. I already have tried a few. I had been taking Effexor, up until last year, and felt like it was no longer working. I asked my doctor, if I could try something different, and I started Pristiq. I've been taking it for at least six months. In the past six months, I've also added Remeron, and Xanax at night (both have been increased in doses a couple of times), to help with my insomnia. That said, I'm as down as ever, and in a very dark place.

I get a little annoyed, when people just write my feelings off as depressed, because I feel the true root of my sadness, stems directly from my paralysis. I'm not saying I'm not depressed, because I clearly am. I'm just saying that, no matter what medication I take, I will ALWAYS have a certain degree of depression. I pointed out, that anti-depressants, are not going to take away the key problems, that are plaguing me: the daily bouts of AD, my physical limitations, bowel program, or my catheter. I suppose, the right medication COULD make dealing with these things more bearable, but on a whole, I honestly can't envision ever being happy, or satisfied with living the way paralysis forces me to live.

After our long talk, Fr. Doug performed the anointing of sick ritual, and we said the "Our Father" together. I hope God was listening, and can offer me some relief, one way, or the other. In the meantime, I'll take Fr. Doug's advice, and talk to my doctor, about possibly trying to change my medications. At this point, I feel I have nothing to lose. I don't want to seem unreasonable, or unwilling to take suggestions. If I didn't want help, I wouldn't bother asking. I just want some peace, and to feel better, for a change. I do wish God would just cure me, or take me. I hate feeling stuck, in constant limbo.

Our conversation, hasn't really changed my mind, about not wanting antibiotics. I feel like, if God truly does want me alive, God certainly has the power to keep me alive, despite that decision. For now, I'm willing to experiment, and see if new meds, can offer any relief. I will also continue to pray, meditate, read, and search, to try and strengthen my faith. I will continue to be open, and honest with my friends, and family, and try to enjoy each day, the best I can. I'm really trying my best. I don't know what more I can do.

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The Suicide Tourist

2011-05-06T23:48:00.005-04:00

I just watched a documentary, called "The Suicide Tourist." It's an very moving, powerful, documentary, chronicling the final days, and eventual suicide, Craig Ewert. The documentary takes place in Europe, and gives an extremely intimate view, of Craig's life, and death. It is a highly thought provoking piece, that raises many questions, about quality of life, and the right to die. Craig himself, is very articulate, and poses some strong arguments, for his decision, and his opinions, on living, suffering, and on dying. I think it offers an exceptional example of why people, OUGHT to have the right to "die with dignity" and demonstrates good arguments, for why euthanasia should be legal, here in the USA. On a whole, the documentary is very tastefully done, and an incredibly brave, and generous contribution to society, on the part of Craig, his wife, and his children. If I could, I would like to thank Craig, and his family, for their willingness to share his story. I have a high respect for his loved ones, in that they supported his difficult decision, and stood by his side (particularly his wife), while he carried out his wishes.

Craig and his wife, both American citizens, had moved to Europe, before he got sick. They had two grown children, and decided they wanted to travel, and live abroad. Craig, who had been a professor of computer science, got a teaching job in England, and he and his wife relocated. His wife started started studying for a Phd, in law, and they were enjoying living their new life together. Everything changed, when Craig started feeling weak, and ultimately was given the ALS (Lou Gehrig's disease) diagnosis, and told his best case scenario, was two to five years left, to live. Around six months, after being diagnosed with ALS , and his rapid deterioration in health, Craig decided he wanted to end his life.

He started doing research, and was disappointed to discover that physician assisted suicide, was only legal in three states (I know of Oregon & Washington). He became frustrated by the fact, that people expected him to just accept his fate, and feared more than anything, what life would be like, once he could no longer speak, or communicate. He feared becoming a prisoner, in his own body (which I feel I am- even though I can communicate- and know what it's like to be completely paralyzed, without speech, from my time spent hooked up to a ventilator) and doubted his life, or death would be as "peaceful" as third party accounts described. He brought up an excellent point, that just because a person is "still," to the casual observer, it doesn't mean that the person is at peace. Being trapped, with no way to communicate, and stuck with nothing but your thoughts, and hauntingly painful memories, is anything, but peaceful. I know from experience. It is hell, and pure torture.

Wanting to prevent further suffering, and speed up the process, of his inevitable death, Craig continued his search for a legal way to end his life, and discussed his viewpoint, feelings and fears, with his wife and children. Realizing that he was suffering, and death was fast approaching, his family respected his wishes, and supported him, in carrying them out. He ultimately found out about Dignitas, a clinic in Switzerland, which offers assisted suicide services, to Swiss citizens, and foreigners alike. Knowing he had to be able to swallow the lethal dose of sodium pentobarbital himself, and that his window of opportunity was closing (due to his degenerative disease, and the unpredictable nature of the illness), he set up his appointment, and was accepted, to receive their services.

During the filming of his four, final days, Craig talked about his reasoning behind wanting to commit suicide, and his opinions on it being illegal, throughout the UK, and much of the US. He very poignantly expressed the fact that, many people throw the issue of God, into the matter, as a leading factor, for why there isn't more support, for assisted suicide, and how it is ironically unfair, that "playing God" is seemingly only a matter of contention, when it involves ending a life (and suffering), versus saving it. He pointed out the glaringly obvious distinction, where doctors "play God," by saving newborn babies (through extreme medical intervention) and keep people alive, unnaturally long lifespans, through medicine, and machines, but that it's "ok" to "play God," when it preserves life. He pointed out the fact, that his respirator, had been "playing God," keeping him alive, and couldn't understand why it was only acceptable, to intervene in extending life, but unacceptable to end life, even when there is no hope of cure, and definite suffering present. I too, do not understand, the rationale, behind this unjust form of thinking.

The documentary discusses Swiss law, and says (which I've read in many articles) that because of the fact that euthanasia is illegal, in the UK, and most of the US, the Swiss government has seen a huge influx, in "suicide tourism," and that outside countries (namely the US & UK) have been pressuring Switzerland to reject foreign petitions, to die within their country. This scrutiny has made it difficult, for clinics like Dignitas, to accept any, but the most extreme, and most desperate of cases. Luckily for Craig, he met Dignitas' criteria.

I think it's a shame that people like Craig (and myself) are forced into living with incurable, extreme disabilities, essentially against our will. I can completely relate, to his suffering, his viewpoint on being forced into dependence, and his fears of feeling trapped, and hopeless. It is a shame, that anyone should have to fly half way around the world, and petition a foreign country, to die a dignified death. I think it is cruel, that our society (and the UK) would rather watch people suffer, who would otherwise be dead, if it were not for medical intervention, than to allow us, to choose what we can tolerate, and what we deem, is a life worth living. Why is it so wrong, to offer a peaceful death, to someone who has no means of living, on their own, to whom medical science can offer no cure, and who is, in his/her own opinion experiencing suffering? It makes me angry, that people like me and Craig have to leave the country, or slowly starve ourselves to death, or slowly die from infection, rather than be given a HUMANE, easy alternative, because other people (who have no clue what it's like to be in our shoes) think it's "right," or "wrong."

I know the pain, and loss, that Craig was faced with, and why he decided to end his life. I know, very well, the terror of being completely reliant on others, and the heaviness, of feeling like a burden. I too, know the sadness, and disappointment, of having to express feelings of wanting die, to the people I love, and the pain and guilt, that comes along with deciding I want to give up on life. I know the shame, blame, and guilt, that society at large, and religion, bears down on the individual. It is a horrible situation to be in.

I know what it's like to look into the eyes, of the people I love, and tell them that I feel my life is no longer worth living. I'm living through that pain, right now, and know how hard it is to let go, even though every fiber of my being is exhausted, and wanting to give in, my conscious keeps reminding me, of the pain my death will cause, and I wish I knew a way to avoid hurting the people I love, while at the same time ending my own suffering. I know how horribly frustrating it is, to be a prisoner, within your body. I'm trapped, exactly like Craig, and I understand his desire to escape.

I applaud Craig, for his courage, and his family, for their selflessness, and compassion. I don't think it's wrong, to want to die peacefully, when death is inevitable, and medicine offers no hope, of alleviating a person's pain, and all the future holds, is a life full of suffering. I wish I had a peaceful option; a means of escaping this life, that didn't involve added suffering, and putting my loved ones through a long, painful process, of watching me slowly die, day by day. I wish everyone could watch "The Suicide Tourist", and gain some perspective, on the fact that, sometimes the most humane, compassionate thing to do, is to offer a peaceful death, and to let go, versus sentencing someone (that would otherwise be dead anyway) to a lifetime of suffering.

Video- http://video.pbs.org/video/1430431984

Information about ALS-
http://www.alsa.org/about-als/what-is-als.html

- Posted using BlogPress from my iPad

Why Getting a Colostomy is NOT an Option

2011-05-06T16:40:00.002-04:00

It's hard to explain (more than I've already spelled out in my blog about IBS), why a colostomy would be so horrible. I recently posted my last blog (about my decision to no longer take antibiotics, and creating a DNR) on the Care Cure Forums. Many of the men on there responded, in bewilderment over why I'd rather die, than get a colostomy, which could possibly alleviate some of the AD symptoms, which plague me, on a daily basis. For me, the question boils down to "quality" versus "quantity" of life. In my mind, based on my standards, for myself, my personal struggles, preferences, and wants, getting a colostomy would not improve MY definition, of a quality life, it would lower it. Given my current situation, and the way I define quality, for myself, the bar is already set very low, because of my extreme paralysis. Getting a colostomy MIGHT (let's keep in mind there's no guarantee) alleviate some of my physical suffering, but I am CERTAIN it would add to my emotional suffering. The decision NOT to get a colostomy, is a no brainer for me, for many, many reasons. It has been one of the two things I have absolutely refused to consider (that and a tracheotomy), since day one of my injury.

Sometimes, I think men are more laid back, and accepting about bodily functions, fluids, and modesty, in general. What you have to understand, about me, is that I had bathroom issues before my SCI. I have deep rooted feelings of shame & embarrassment, revolving around the need to go to the bathroom (number two). I couldn't use public bathrooms, or go at other people's houses. Having IBS complicated matters, and I would tolerate tremendous amounts of pain, holding it in, because I couldn't bear the thought (embarrassment) over going, and having other people know about it. I know that's illogical, and that it's a natural human function. However, my brain also tells me it's disgusting, unladylike, and I have always felt the compulsion to hide the fact that I do it. I have always been extremely critical of myself, and often hold myself to unrealistically high ideals, to be a perfect person. Having a SCI and being paralyzed has been my own personal hell. It has forced me to reveal every minute flaw, from acne, to bodily fluids, to poop, to my naked body, flab, hair in places I don't want, etc. The list goes on and on. Everything I used to work hard to perfect, through exercise, diet, grooming, makeup, and in the PRIVACY of MY own bathroom, by MYSELF, I'm now FORCED into sharing with others, and are exposed, for all to see.

I have been self conscious about my weight, and my looks, my entire life. I've always felt the need to be perfect; to look like the women in magazines; to be the best in everything I do; best in class; best teacher; best artist; best daughter; best friend and so on, and so forth. Although I know I'm only human, just like everyone else, when I was on my feet, at least I could deal with my humanly imperfections, and flaws, in private. I had the luxury of being able to create, and mold myself into the best possible version of myself, through hard work. I had control, over handling and tackling my flaws, my way, by myself. Paralysis has robbed me of my control, and my privacy. It has been hell.

I was never comfortable in my own skin. I was always working to improve myself. At the time of my accident, I had already scheduled a cosmetic procedure, to enhance my looks; to be a better me. My accident happened three weeks, before surgery, and it never got done. It still bothers me, and I still feel lacking. In fact, my SCI has made me feel uglier, and more flawed than ever. It's robbed me of the ability to exercise, and tone my muscles. It's left me flabby, full of scars. I can no longer take care of myself (hair, makeup, nails, skin, etc) the way I used to. Having to have other people, help me with those things, that SHOULD be private, has been awful. The worst aspects, of paralysis, and not being able to care for myself, by far, has been anything, and everything related to the bathroom, and my body. The more, foul, and disgusting, the more embarrassment, and shame I feel; the more violated I feel.

Having to have other adults, see my nude body (people that I'd otherwise, NEVER reveal myself too- like my mother, adult siblings, countless aides, friends, nurses and doctors) and have to touch, and help me, and WITNESS my urine, blood, spit, poop, boogers, vomit, and pimples, is horrifying to me. I feel like paralysis has stripped me, of my basic human rights, to care for myself, and keep my self respect, and dignity. I HATE every single time I need to expose myself, and my flaws. I SHOULD at the very least, have the control, and privacy, to handle my body, and all of it's flaws and functions, as a self sufficient adult. It's not normal, or right, that paralysis FORCES me to reveal all my insecurities. Every human being is entitled to privacy, however paralysis has made that impossible for me. Living with paralysis, has imposed countless, uncomfortable, emotionally, and physically painful limitations on me, that leave me with no choice, but to accept, being violated, and continually exposed.

The thought of having to undergo another surgery, and have ANOTHER false, oriphus cut into my body, is unacceptable. I know the pain, and embarrassment that my catheter causes me. It is revolting, and I hate it. It is unnatural, and leaves me susceptible to chronic infection, and in and of itself, has been a source of sickness, and physical discomfort. I absolutely refuse, to do the same, with the single most repulsive bodily function (in my opinion) possible. I will not live with a bag of feces strapped to my side. I'd do ANYTHING to NOT have to "go" in the first place. Being perpetually attached to a bag of shit, to me, is the ultimate submission of self respect. If that is where I'm at, in life, that I must stoop to that low, to extend my life, then life itself is not worth living.

I have endured unconscionable compromises, in these last six years, for the sake of living, but at what cost? I am miserable. I hate paralysis. I hate feeling violated. I hate having little, to no control over my privacy, my health, and my body. I have suffered with loss on such a massive scale, that no one should ever have to suffer. My body and mind are rejecting this unnatural life. I will not submit anymore. I have suffered enough. I have (and continue to) accepted help, to be fed, clothed, and bathed, to endure bowel program (getting routinely sodomized- for lack of a better description), take dozens of pills every day and have a catheter. At what point, am I allowed to say, enough, is enough? I see very little quality, in the life paralysis has forced on me. I will not bend any lower. I will not compromise any further.

I'm tired of living a lie. I am not happy. I will never be satisfied with THIS life, because of ALL the compromise, and lack of privacy. I don't think I'm being unreasonable, for wanting BASIC human rights, and abilities. I don't think it's illogical, or wrong, to want a normal life, to want better for myself, and to have limits, to what I'm willing to accept. I think I've been quite flexible, and rational, these past six years. I understand my limitations, and know the reality of my situation. I know that's it's not done out of malice, but out of care, that people want me to accept, the unacceptable. People want me to live, for them. I'm thinking about living for me. Getting a colostomy is not something I can, or want to have handle living with.

Yes, my decision to forgo taking antibiotics will most likely result in my death. All I'm saying is that, I haven't decided to PROACTIVELY hasten my death, by refusing food/water. I can't control getting, or not getting a UTI, or any other infection. I can control, if I want to fight to live. In that regard, I see no value, in prolonging my own suffering. Just as, getting a colostomy, would serve to extend my life, it would also extend my suffering. No matter how I look at it, living with paralysis, given my physiology (having IBS, needing a catheter, being completely paralyzed, dealing with AD), my personality, and my personal standards, it only equates to suffering. As long as I live, being completely paralyzed, I will continue to suffer, because of my hate of being dependent, lack of privacy, and chronic illness. To me, this life is not worth fighting for anymore.

I'm not saying, I have absolutely nothing worth living for. My loved ones, and the love, support, they give me, and the time we spend together IS most certainly valuable. However, on a whole, living with paralysis is very painful (emotionally and physically). For me, personally, their love and support, is not enough, to counterbalance the immense loss I've endured, and doesn't justify me continuing to live THIS way forever. I'm tired. I don't want to keep extending THIS life. I know that sucks, for my loved ones. I know the pain of loss, better than anyone. It doesn't mean I don't love and appreciate my friends and family. I just feel like I love myself enough, to not want to keep perpetually living a life that is torture. No one has to agree with me, they just have to respect my choice. I'm the one living (or dying) in my shoes. What will happen, will happen. I am at peace with that.

- Posted using BlogPress from my iPad

Reasons For Suffering? Cruel & Unusual Punishment.

2011-05-01T14:41:00.005-04:00

Although I don't have a strong faith in any specific God, I have been reading the bible (King James version), both New and Old Testaments, and do pray, on a daily basis. I'm not angry at God, and I do not blame God, for what happened to me. I believe, if God exists, God gave us free will. My accident happened as a result of my own poor judgment, and my actions. I have an EXTREMELY hard time believing in the notion, that God "planned" this for me, or that God "wants" me to suffer. If God is all knowing, and all loving, surely God would not want THIS life for me.

While I don't blame God, I do wonder why God seemingly intervenes in some people's lives, and not others. It doesn't seem just, that God would "play favorites" and miraculously heal some people, while allowing others to suffer. I struggle with the notion of why God hasn't chosen to alleviate my suffering, by curing me, or taking me away from this life. Surely, if God exists, he knows how awful my quality of life is, and how terrible it is to feel chronically ill, and have to endure humiliating, degrading treatments.

I know God has blessed me with talents, and that I have been able to do good, and help others. My question is, how long am I expected to suffer, for the sake of others? Jesus suffered for our sins, but at least he understood, and knew his purpose. I feel at a loss, as to why I must live this way. I have no proof, or concrete answers as to why I must suffer, or for how long. Jesus knew his purpose, understood his mission, and had the definite belief that he would be resurrected, and rejoin God. I have no explanation, no end in sight, and do not know for certain what awaits me, after death. I do not have a direct communication with God, in terms of God answering my prayers directly, or giving me explanations. I don't have angels attending to me, nor the power to create miracles. I think it's unrealistic, and unfair, to be expected to live up to Jesus's standard, when he had the comforts of knowing, and understanding the purpose, and reasoning behind his own suffering (assuming that he was in fact, the son of God).

It is especially hard, trying to make sense of how unjust life seems. I was a good person, and yet I must suffer. There are evil people, that rape, steal, and murder, that have healthy bodies, and live full lives. I know that we will all supposedly get judged once we die. People that do evil deeds here on earth, could receive all types of varying punishments, in hell, but heaven is heaven. Just as an example, theoretically, my grandma and I will both be going to heaven. She got to live a full life, have a family of her own, travel, and experience life with relatively good health, very late into her life. My life was cut short, at twenty four, and I've been suffering horribly, ever since. Yet, we will both get the same reward. I'm not saying my grandma doesn't deserve to go to heaven, I just don't understand the reasoning behind my suffering having a meaning, or purpose. It's not like there's levels of heaven. Heaven, is heaven. So why is it, that I MUST suffer? It's not like I'm going to get some extra special reward, or go to a better heaven, than everyone else.

My art, and writing may help others, but my overall lifestyle and chronic illness has left me feeling unfilled, unsatisfied, and very much like a prisoner. I feel as though I'm being forced to live a painful life, full of sickness, loss, and limitations, against my will. I do not want a catheter, bowel program, to take dozens of pills, have no privacy, or personal space, to be clothed, washed, and fed like a baby. I'm only alive because our society has the means, and resources to keep me alive. I'm forced into living a very unnatural, unhappy life.

I have no means to fend for myself. I either accept the catheter, bowel program, medications, and help from others, or I die. Every day, my life is being artificially extended (against my will-for the sake of others). Under ANY other circumstance, the things I have to endure, would be considered torture, but society ignores that truth, under the guise of medical necessity. Just because I have no other choice, doesn't mean I should HAVE to live this way, or be forced to. Yet my caregivers, and loved ones expect me to accept the unacceptable, because they don't want to see me die. They don't want to lose me. They feel I can contribute to society. I know I can, but for me, it doesn't seem worth the price I have to pay. Living this low quality of life, of limited options, and chronic illness is not worth it, for me.

A reader of my blogs, sent me this analogy:

"Thinking about your situation, Christina, I recently had the following thought. Suppose a brutal foreign dictatorship were to take a political prisoner and subject him to the EXACT same routine your paralysis imposes upon you. That is, they bind the prisoner up tightly so he can't move from the shoulders down, can't feed himself, can't even scratch an itch.

He has to be carried or hoisted from place to place. As an added 'enhanced interrogation technique,' this political prisoner also has his bowels manually evacuated every other day, being strapped half-naked to a commode chair, sometimes for a couple of hours at a time, afforded no privacy whatsoever. And, for the convenience of the guards, plus just to pile extra humiliation and discomfort on this man, they surgically install a suprapubic catheter.

They keep this political prisoner in these conditions for HALF A DECADE. Furthermore, like many prisoners of conscience the world over, the tormented man is never told when, if ever, he will regain his freedom. Maybe a year from now ... maybe a month from now ... quite possibly never.

Now, there is no human rights organization on this planet that would not be howling at the moon over what this prisoner was being subjected to. Plainly, he is being subjected to soul-numbing, psychologically devastating torture. NO ONE would assert what this political prisoner was being forced to endure wasn't a horrible violation of the man's most basic human rights, and certainly no one would be telling him to just get used to it, or it isn't so bad, or that once he 'adjusts' to this new way of life at some unspecified time in the future, everything will just be peachy.

Indeed, anyone who DID suggest that the condition of this prisoner's detainment weren't really so bad, or that his situation was one that anyone could cheerfully live with in time, if he put his mind do it, would be called crazy."

When I read this, I couldn't help but scream (to myself), "Thank you!" Thank you for understanding me. Thank you for seeing reason. Thank you for noticing the obvious, that NO ONE else in my life wants to readily express, or admit. I think everything about this analogy rings true, and can't understand why more people don't see my situation, in this way, as I do, or whether or not they are just afraid to admit it, for fear of encouraging me, to give up. I don't expect my loved ones to cheer me on, or want to see me hasten my death. I just want to feel understood, and validated, for feeling the way that I do.

I'm constantly frustrated, at having to explain, or justify my reasons, for not wanting to live this way. I do feel I'm being tortured; not necessarily by God, but just by the nature of how my paralysis has forced me to live. I do feel like I'm being punished, for one mistake (again, not necessarily by God, but punishment none the less). I do feel like a prisoner, trapped in my own body. I do feel like the lifestyle that PARALYSIS forces on me is cruel, and inhumane. It is, what it is, and I have no choice but to accept it, or die. That's reality. It's a reality I want people to understand, because I think it desperately needs a solution, a cure. People like me, deserve a cure, or at the very least the right to decide whether or not we want to live with paralysis (and everything that entails- not out of choice, but necessity).

People often bring up the fact, that I used to be more optimistic, in interviews I've done, and in the TV episode of Soul Survivors. Back in 2009, when I filmed Soul Survivors, I still had hope of a possible cure. Since then, my health has deteriorated, and before now, I wasn't having to deal with daily fevers, cold sweats and mysterious chest pressure. I know (based on everything I read) that realistically, a cure for chronic SCI patients, is at least a decade away. I honestly don't think I can live this way for another decade. Six years has been hell on earth.

I haven't decided if I'll ever choose to actively hasten my death, by refusing to accept food/water, but I have decided I no longer want to go to any extraordinary measures to extend my life (beyond what I'm already doing- and feel in and of it's self is excessive- such as having the catheter, taking dozens of pills, and having a bowel program). I have a willing will, that states I don't want any artificial life support, and am in the process of making a DNR (do not resuscitate order- in case of emergency). If I get a urinary tract infection, or respiratory infection, I'm not going to take antibiotics. I will let the illness run it's course. I'm tired of fighting for a life I hate living. My hope is, that I've suffered enough, and that when that time comes, God and my loved ones will understand my decision.

- Posted using BlogPress from my iPad

My Pets

2011-04-15T16:19:00.003-04:00

My pets are one of the few things that make me smile. Ordinarily, I'm a cat lover. Growing up, I had two households (my dad & stepmom's house, in NJ and my mom & stepdad's house in PA). I lived primarily with my dad, and stepmom, and visited my mom & stepdad on weekends and during school vacations. At my dad's we had a strict "no mammal" pet policy. My dad maintained a fish aquarium, and my stepmom has two parrots (one Amazon , name Rocky, and a Goffin Cockatoo, named Noel). While the parrots can be amusing, only my stepmom can actually handle Rocky, and Noel is a bit neurotic. Neither of them provided me, with any companionship. At my mom's we always had a ton of cats, outside dogs, and various small critters, over the years (guinea pigs, lizards, parakeets and rabbit). I was especially attached to three cats, whom I grew up with, Nusy, Gizmo and Mitzoo. My mother had Nusy, every since I was a baby. We got Gizmo when I was around four, and Mitzoo when I was about seven. I was most attached to Gizmo, who lived the longest (she died shortly after I began going to college), and I spent the most time with. She was super lovable, affectionate and sweet. Even as an old cat, she had the cutest high pitch mew, that sounded just like a kitten.

I love dogs, but I've always preferred cats. As an adult, most of my boyfriends had dogs, and both my little sisters, and brother each had dogs. I've been around them nearly my whole life, love playing with them, and being around them, just never owned one of my own, until recently. I'm an animal lover, in general, and like all kinds of little critters. I especially love little, fury mammals. I enjoyed playing with my guinea pigs, at my mom's when I was young, and always felt I was missing something, not having a pet of my own, at my dad's. It wasn't until I was almost finished with college, that I managed to convince my dad, to let me break the "no mammal" rule, and bring home a pet. I adopted a chinchilla, who I named Tskushi (after an anime character), from my mentor, Mr. Grace. He had been my high school art teacher, and mentor for my junior filed work, and student teaching. When I found out he had experience breeding chinchillas, and had a few up for adoption, I just HAD to have one. At first I convinced my boyfriend at the time, to let me keep her at his place, but later moved her home, to my parents house. I thought my dad would pitch a fit, but instead he fell in love her, and played with her, and enjoyed her company, just as much as I did. In fact, when I first brought up the idea of moving out, he asked if I wouldn't mind leaving Tskushi behind, because he'd grown so attached to her.

When I moved out and got my first apartment, one of the most exciting aspects to my new found freedom, and independence was getting my own cat. I adopted a pretty, little grey and white cat, from my grandparents. They had inherited her from a friend, who had initially just asked them to watch her temporarily. They already had two other cats, and I felt like they were struggling to care for them, so I offered to take "Tinkerbell" who I later changed her name to Bella. I moved into my first place in April, 2005 (precisely six years ago, today). I only got to enjoy living in my apartment, and with Bella, for two months, before my injury. Even though our time together was short lived, I quickly fell in love with her, and really enjoyed her company. She had a big personality, and demanded a lot of attention, which I kind of liked. She's was super chatty, and would meow my ear off, as soon as I got home from work, every day.

The funny thing was, I didn't realize that she was pregnant when I adopted her (she was only around seven months old, had a small frame, and had been an indoor cat). Both her, and my grandparents' other cat, were not neutered, and had apparently conceived a kitten, just before I took her. Three weeks before my accident, I came home to a big surprise. I had just finished bar tending school (I had lined up a bar tending job for summer employment), and came home late that night. I opened the door to my apartment, and Bella greeted me, as usual, meowing away, about who knows what, when out of her little cubbyhole, crawls out a small, grey thing. At first, I was shocked, and thought maybe she's somehow caught a mouse. I crouched down, to get a better look, and realized it was a kitten! Immediately, I called my boyfriend (who was already on his way over) and started freaking out, and frantically searching my apartment for the rest of the litter. We searched high and low, and found no signs of any other kittens. I thought that was bizarre, and called an emergency vetinary hotline, to get advice. They told me, it could take hours, in between labor, and to stay up with her, and monitor her through the night. By the next morning, we still only had one, small grey kitten, so we took mother, and daughter to the vet to get examined. They took some xrays and determined that Bella had an abnormally small "litter", of one, most likely due to the fact that she and the father cat, were both very young in age. I was pleased, that they were both healthy, and decided to keep the new addition to the family. We named her Rosa (the initial choice was "Axel"-based of the lead singer from Guns'n'Roses-but given the fact we found out she was a girl, we came up with a compromise). Rosa had just opened her eyes, and had begun running around when I got hurt. When my apartment got closed down, my best friend Erin adopted them both. Now Erin, and her husband have Rosa, and my grandparents have Bella. I've had the chance to "cat sit" for them, various times, throughout the past six years.

After my accident, I spent a year and a half living in a nursing home. In January 2007, I got myself out, and into an apartment of my own. For the first year living here, I lived with a roommate. Steve and I had been high school classmates, and had got back in touch, shortly before my accident. He really helped me out, by agreeing to room with me. Although I have no functional mobility, the state only provides me with eight hours of having a home health aide, per day. It was crucial for me to have a roommate, to have the safety, and security, of having someone here at night, in case of emergency. Steve and I got along well, and I enjoyed our time living together. As an added bonus, Steve brought along his cat Maynerd (aka Manny) to keep us company. I really enjoyed having Manny around, especially during the day, when I was alone in the apartment by myself.

After living here for about a year, Steve and his girlfriend (now wife) decided they wanted to get a place of their own. I had a new roommate lined up, but he backed out at the last minute, leaving me in a tight spot. I asked my sister Kati, if she wouldn't mind coming to stay with me for a while. She agreed, and moved in with her dog Precious, who I knew, since before my accident. Precious is a golden retriever, cocker spaniel, corgy mixed breed. She's super affection, lovable, mild mannered and very well behaved. Having her here has been really great. She's super loyal, and loves to keep me company. She often lays near my wheelchair, or beside my bed. Everyone that meets her, just loves her.

Once Manny had left, I felt like I really missed having a cat. I discussed the idea of getting one, with Kati, and my mom, and they both agreed they'd be willing to help me take care of one. We adopted Tommy, around Halloween, 2008. I had searched for a while, online and ended up finding him through his foster family. Since we already had Precious, it was important for me to adopt a "dog friendly" cat. Tommy is just that! In fact, we think he thinks he IS a dog. He plays well with dogs, is EXTREMELY outgoing, curious & smart. He even wears a harness & takes walks with the dogs (I'm serious).

Tommy is a little too smart! He can open all of the doors in my apartment, so we had to change my doorknob from a lever, to a round knob. When I first got him, I had an environmental control unit, that I could control, by tapping a button, on my pillow, with my head & give verbal commands. If I needed help, I'd tap the button, and say "get Steve", which would in turn, sound an alarm in Steve's room (now my sister's room). For some reason, instead of just pouncing on my sister, and waking her up, he'd come barreling into my MY room, meowing for food, at 5 or 6 am. Then, I'd sound the alarm, and he'd go charging off, towards the second bedroom. The routine got old, fast, and I opted for the different knob, which he's since given up trying. He will on occassion bust into the bathroom, on guests, if they forget to lock the door. He's one of a kind (my family has owned many, many cats). He got very attached to my mom (who plays with, walks, & feeds him), and could care less about me. He is catlike in the one aspect, that he requires a 50/50 relationship. I can't offer him much, so he's not interested in me. That's the main reason I got Naama.

Naama is my very first dog. She is a Miniature Pinscher, with a BIG personality! I always thought if I were to get a dog, I'd want a small, short hair breed. Being a cat person, I like the idea of being able to carry my pet, and be able to have my pet on my lap, and in bed with me. She was a spur of the moment purchase. A friend of mine, who I met online (playing Maple Story) had come to visit. We took her to see my art exhibit, and then to a local mall, to my favorite restaurant chain, the Rainforest Cafe. We made the mistake (in a good way) to stop in the pet store on the way out & I fell in love with Naama. I'd always wanted a mini-pin & really wanted the companionship. I named her after my friend, Naama. She's the best thing (being) I ever bought. She's super cute & sassy. She makes me laugh. She's super spoiled, and she knows it! She's definitely got a "diva" complex, and can at times, be a total drama queen! She's the closest thing I have to a child, and I love buying her cute little outfits to wear. She's got quite a wardrobe, and I get a kick out of seeing her prance around, in her clothes. She's been great for Tommy, and they play well together. They can both get pretty hyper, and Precious is too old to be bothered. Tommy and Naama make good playmates and I just love watching the two of them interact. Having pets has definitely been a spirit lifting experience for me. They can make me smile, even on my worst ways. I'm truly thankful for their love and companionship.

- Posted using BlogPress from my iPad

Paralyzed Without Joy

2011-04-14T22:42:00.004-04:00

An online friend of mine Laurie, recently asked me if I'd read any blog postings, by a woman named Heather, who writes a blog called "Paralyzed With Joy!" Heather had left a comment, on one of my previous posts. I saw the comment that she sent to me, and have to be honest, in that I wrote her off as a religious fanatic, and never visited her blog (until the other day, when Laurie brought it up). I'm ashamed to admit that, because it sounds presumptions and rude of me, and that's not usually how I am. It's wrong of me to judge her for saying that she's "joyful," just like I feel it's wrong for people to judge me, and expect me to be happy. Her comment just rubbed me the wrong way, because I disagree with the notion that "God did this to me." I take full responsibility for my mistake. Perhaps, it's because she was injured, through someone else, slamming into her car, breaking her neck. She wasn't at fault, and I'm guessing finds comfort, in the line of thinking that it all happened as part of "God's plan." I stupidly dove into a shallow pool. My foolish mistake cost me my health, and the life I loved. Although, I didn't intentionally dive, to harm myself, and there were many variables in play, it's my actions that ultimately caused my injury. God didn't push me into the pool, nor do I believe (if such a being exists) he/she/it/they planned this life for me. I don't believe in destiny, or predetermined futures.

I know she didn't intend to offend me, no one ever does, when dishing out religious counseling, or offering up scripture. It's just hard, for me, as a skeptic, and often cynic, to accept. While I am grateful for any feedback I get, it is hard for me to accept, when it's coming from a religious perspective. She's not the first to offer up words of "divine wisdom," nor will she be the last. Though appreciated, I take every word of advice with a grain of salt, because no one but me, has to live in my shoes, and knows my suffering, better than me. As far as religion goes, no one can offer up proof, that their beliefs are truth, you either believe it, or you don't. Personally, I have a hard time believing in a God that would WANT THIS life for me.

Laurie and I met through Facebook. She has MS, and got to know me, by reading my blogs. One day, she decided to write to via Facebook, and shared some of her story with me. Although there is a generation gap between us, we share a lot of interests in common. She was also a teacher. We've been writing emails back and forth for some time now, discussing all sorts of things, like languages, movies, pets, religion, family, friends, and our personal struggles, dealing with our disabilities and adapting to life with paralysis. Right now Laurie still has much more functional movement than me, but is continuingly having to adapt to her degenerative disease. I often wonder if it would've made it any easier on me, if I'd gradually lost my abilities, versus losing everything over night. Either way, paralysis sucks, and we both struggle to find answers for "Why us?" and searching for reasons to keep moving forward, despite it all. It helps having a kindred spirit, to talk to, even if you're each having a rough day. Although it makes me sad to know other people are effected by paralysis, it helps having others to turn to, that know what it's like to need help, and having lost independence. It especially helps having someone to talk to that is like minded, and shares a similar perspective, and attitude, towards THIS lifestyle.

Laurie is like me, in that she is disatified with compromise, and hates the ever growing number of limitations that paralysis has forced upon her. We are both very unhappy with the indignities of paralysis, and would most certainly never describe living with such lack of freedom, and forced dependence as "joyful." The mere name of Heather's blog irritates me. How anyone could possibly be "paralyzed with joy" is beyond me. I can't help but think she's insane, for saying things like "On a scale of one to ten (ten being the most satisfied with life) she is a ten" or six years post spinal cord injury, she's "the happiest she's ever been." On one hand, I want to slap myself, for being so critical, and judgmental. Clearly, I don't know anything about this woman, besides the fact that she is paralyzed, and apparently happy. Who am I to say she should, or shouldn't be happy, just because I have such a hard time coping with the changes in my own life, and hate every aspect of being paralyzed? On the other hand, a part of me is even jealous, that someone in a similar condition to me, could be so happy, when I'm so miserable. I know the secret to her happiness, and understand how it gives her such a rosy perspective on life. The source of her happiness, is something I wish I had, but can't force upon myself, and that is blind faith. I've seen it many, times; people like her, and Joni Erickson Tada, that despite their paralysis, they're able to be happy, and draw strength from God (specifically Jesus, in both of these cases).

I struggle with having faith in any God, let alone any one specific God. Although my accident has stirred up fears about God, and an afterlife, it hasn't helped me make any breakthroughs, or have any great epiphanies. On the contrary, it has put more, and more doubt, in my mind about God, and his/her/it/their supposed interest and/or love for me. As for being joyfully paralyzed, I see that as being a product of her convictions to God, not how extraordinary her life is. Let's face it, no matter how you dice it, paralysis sucks. It is a struggle, living with paralysis every day. I don't believe for a minute that any sane individual would choose to be paralyzed, over being healthy. Paralysis might have opened her eyes, and fostered in her a new appreciation for life, or feelings of being given a "second chance", after coming so close to death, but I guarantee she'd prefer being able to care for herself, over the life she has now. It is her belief in God, that gives her the ability to see purpose and meaning, in her suffering, and that gives her joy, despite being paralyzed.

I wish I could say the same for myself, but I can't. My belief in God is shaky, at best. I tend to lean towards Eastern philosophy, and feel turned off by Christianity. Some of my resistance to Christianity is my own, logical analytical nature, and my finding it hard to believe in a God, that would be as petty, jealous, or harsh, as the God of the Old Testament, and my historical knowledge of how Christianity formed, and how man has corrupted, and influenced all organized religions, in general. Growing up Catholic, the church, and it's rituals always seemed suffocating to me. The mere notion that Jesus is the ONLY path to "salvation" has always pushed me away. I just can't believe in a God that would eternally damn good people, just because they worshiped him/her/it/they by a different name. Logically, I don't even understand the huge rift, between Muslims, Christians, and Jews, given the fact that all worship the same God, and believe in the same prophets. Despite their common roots, and belief systems, people use "God's" name to promote their own selfish, man made agendas, and divide humanity. The more I have learned over time, the less I have come to believe, except for one unifying moral, to love oneself and my fellow man. It's the one idea that makes sense, and stands up to the test of time, throughout all religions, and faiths.

I think of having a strong faith in God, can be as equally powerful as ignorance. Ignorance is bliss. Blind faith is like that, in many ways. No matter how outlandish, or unscientific something is, people with faith believe. Faith is blind, and unquestioning. It also lets people be "blind" to the realities of life, and helps paint a silver lining on everything. At times, that blind aspect of faith can be bad, because it can be used as weapon, to make people do, and say things that hurt others, in the name of "God", or accept situations, no matter how horrible they are. I don't think God (if he/she/it/they exists) would've bothered giving us logic, and reason, if he/she/it/they, didn't want us to sometimes use those abilities to evaluate situations for what they are, and think critically, for ourselves. Likewise, if God gave us freewill, then I believe he/she/it/they is solely an observer, of our lives, and doesn't often intervene (if not, at all). I don't think God "gives" us a bad, or good lot in life. I think we get what we make of it. However, that also means I don't buy into the BS that, "God only gives us what we can handle" and "everything happens for a reason." I think sometimes bad things just happen, and they most certainly are too much for any one person to handle. I many respects, I hate myself, for making the stupid mistake, that paralyzed me. On the other hand, I love myself, enough to feel like living with paralysis, is cruel, and unusual punishment. In my case, my punishment VASTLY outweighs, my mistakes, and I don't think it's wrong for me to be upset about, or not want to have to live the way paralysis has forced me to. If God is watching, he/she/it/they knows how hard my life is, and how much I'm suffering, and I don't think it's fair, or just, for anyone else to judge, either way.

It pisses me off, when people down play their paralysis, because I feel like it's crucial for the average person to understand how hard it is, to live this way. I mean, if life's so grand, why bother finding a cure? I believe the key to gaining support for research, is by touching people's minds and hearts, on a personal level, by putting faces, names, and stories, to the word "paralysis." I believe that every person I touch, by sharing my story, and sharing my pain, is one more person that's aware of possibility that his/her life could change; one more person who cares about finding a cure; and one more person that can better appreciate the health, and abilities he/she still has. Yes, maybe if I had a stronger faith in God, this would all be a bit easier to handle, but that wouldn't diminish the fact that I'm dependent on others, sick and in pain. I don't want people to forget, or overlook the realities of living with paralysis. It's not ok, having to have a bowel program, a catheter, needing to be fed, bathed, and clothed. God, or no God, those are REAL, tangible things, that I'm FORCED to face, every day. Paralysis doesn't give me an option, and I don't get a break. I have to deal with all of that stuff, plus all that I lost, plus the sickness, every second, of every day. Does that mean I never have a joyful moment, or have anything I'm grateful for, of course not. However, reality is that living with paralysis sucks, and I'd give ANYTHING (besides my soul- ironic, I know) to just be healthy again.

I'm skeptical of anyone who says they're "happy" with living with paralysis. Laurie is Jewish, and like I said, I was raised Catholic. Neither of us is very "religious", nor do we blame God for our paralysis. It would be very easy, to put the blame on God, since after all, if such a being exists, and created the universe, space, and time, he/she/it/they could certainly fix something as simple some faulty nerve connections. We both take a more logical, fact based approach to life, and chalk our situations up to bad luck, not some divine plan. Rationally, it's hard to accept that anyone would be thankful, to be paralyzed. It seems against human nature, to WANT, or prefer to be dependent on others, and have a constant invasion of privacy, and personal space. The fact of the matter is, paralysis strips people of freedom, and forces a tremendous amount of change into one's life.

Most people would not want to live this way, by choice. It's not to say, that I don't believe people can find things to make them happy, and give them purpose, despite paralysis. I believe each individual's case is unique, and factors like religious beliefs, level of education, career, financial status, personality, support network, and level of independence before paralysis, play a HUGE role, in how "happy" a person can be, living with paralysis. You can't miss, what you never had, and some people lose a tremendous amount more than others. Suffering should be evaluated on a case, by case basis. Just because one person can find "joy" living with paralysis, that doesn't mean everyone can. I think each individual has the capability, and right, to asses their own level of suffering, versus amount of enjoyment. I don't think everyone can find balance, or the extreme opposite, happiness.

Naturally, Heather is entitled to her line of thinking, and in many respects is lucky, to be able view life, in the manner she does. I think that everyone has their own desires, standards, and threshold for what they can tolerate, and that living with paralysis should not be forced upon people, without escape, in the manner that it is. Living this way, for me, and others like me (Laurie for example) find living with paralysis closer to Hell, than to Heaven. I don't think that makes us weak, or wrong, just as it doesn't necessarily mean extraordinary people like Heather, Christopher Reeve, Joni Erickson Tada, and Dr. Dan Gottlieb, as being "better," or stronger, it just means we're all unique. Life is not like a cookie cutting machine, where one size fits all can apply. I think each person has the right to determine what he/she considers to be quality.

I realize that not everyone agrees with that philosophy, but personally, I feel like in certain situations it is justified, not wanting to live (aka- prolong suffering). For example, I don't want to ever live dependent on a vent. I have been on a vent before, and would prefer death, over ever having to go on one again. I realize that there are people out there that live dependent on vents, that feel happy, and fulfilled. Does that make them superior people? I think it just makes them different. I think everyone should have (and do, to a certain extent- through advanced directives and living wills) the right to determine what they consider to be quality. After all, it's very easy to hand out advice, when you're not the one having to live through it. Some people would disagree, and say that people should go to any lengths possible to extend life, like people hooked up to machines, despite being in a vegetative state (such as the Teri Shiavo case) . I realize this is a hot button issue, that people feel strongly about. I'm merely stating my own personal opinion, given my life experiences.

I personally feel as though I'm at a point of living with paralysis (C4/C5 complete injury), where I feel as though living, is only prolonging my own suffering. I battle myself every day, to keep pushing forward. The thing is, I feel as though my life is being sustained by unnatural means. If I truly left my life "in God's hands", I'd be dead a long time ago, because I have no ability to fend for myself. I'm kept alive by people, medication, and awful treatments (suprapubic catheter & bowel regime). I'm only alive because our society has the means necessary to provide me with all the services and things I need. However, there comes a point (right now, in my case) where one must evaulate if the ends justifies the means. I definitely can not say that I'm "paralyzed with joy." I feel more like a prisoner, than anything, and want nothing more than my healthy body back. I hate being dependent on others, and being chronically sick. I'm glad for people like Heather, in that I don't take pleasure in hearing about other's suffering. It's nice for her, that she is happy, but I can't imagine ever finding that level of enjoyment, or contentment, with having to live with so much pain, and compromise.

"Paralyzed With Joy!" - http://paralyzedwithjoy.blogspot.com/

- Posted using BlogPress from my iPad

IBS & SCI

2011-03-31T22:49:00.004-04:00

I had a long conversation with my friend Mariam the other night. She's a fellow AMFPA artist and quadriplegic (I hate that description), like me. This month marked fifteen years, since her accident. She lives on her own, in Chicago. She's an amazing artist, and has a wonderfully positive attitude about life, and dealing with living with paralysis. Although she's admitted to me that she's had her fair share of dark days, and moments of feeling like she wanted to give up on life, she lived through that rough period of her life to tell the tale, and has been trying to help me see the possibility of finding happiness, despite our injuries. We share a lot in common, and I really appreciate her insight, and her taking time to try and cheer me up.

Just like I feel it's impossible for most of my friends to see the world through the lens, and perspective on life, that paralysis has given me, it's near impossible for me to see (or imagine) my life through Mariam's eyes. I have a couple friends (including Mariam) that have been injured over a decade, and it's hard for me to wrap my head around that amount of time, living this way. When I think about the Hell these last six (almost) years have been, and my deteriorating health, my mind begins to short circuit, at the thought of having to go through this for another six, or ten years. I get chocked up, just at the thought. It's a very scary, hopeless filled future, through my eyes, at this point in my journey, right now.

Mariam said she went through a similar extremely dark period in her life, where she gave up caring. She said her poor health was a big contributing factor to her mood, and both fed off of one another, in a viscous downward spiral. I feel caught in the current of a similar cycle. It's very hard to envision any brightness in a future, that is certain to include more of the same stuff that I've been going through, and will continue to go through, unless miraculously cured. No matter how you slice it, bowel programs, catheters, lack of privacy and being dependent on others, is part of my future. Those are all inevitables, I can't escape.

Mariam agrees with me, that bowel program is a horrendous aspect of living with paralysis, that we need. However, she said that there might be ways of "streamlining" my program, so that it's not SUCH a burden. She and I discussed our routines, and I was kind of shocked by the comparisons. I have my BP every other day (in the morning). It usually lasts two hours, or more, and entails me sitting strapped to a commode, over the toilet. I have a nurse present, the entire time, who uses a suppository and manual stimulation, every ten to twenty minutes, until I'm "empty" (disgusting, gross & disturbing, I know). On top of that, I take five Senekot and two Colace pills each day. Not to mention, trying watch my diet and eat plenty of veggies and fiber. Despite all that, I still have occasional "accidents", which are terribly traumatic, and usually unexplained. I have at least one a month. Occasionally (like last week) I'll have a BP day with near to no "results" and end up then having to have BP for three days, back to back, as to not mess up my nursing schedule. In contrast, Mariam was telling me, her BP only takes 45 minutes, every THREE days.

I've gotten quite a lot of feedback from other people that have BP, and routines seem to vary widely, from individual, to individual. I've had more than one person respond to my posts (in Care Cure forums), with their own horror stories of three hour BPs, hemorrhoids and the alternative of trading it all in for a colostomy. As I've said a million times, I'm not willing to entertain the colostomy bag option. Knowing the Hell I currently go through, and how my body reacts, I also can't envision being able to get away with only having BP every three days, like Mariam. Although it sounds like a WONDERFUL alternative, to my current routine (the best idea I've heard), I honestly don't think my body could tolerate waiting that long to "go." As it is, I experience a lot of extra AD like symptoms the night before BP. I attribute the discomfort (chills, fevers, chest pressure and sweating) with gas, and with needing to go to the bathroom. I've tried taking Beano & Gas-X, on hopes of alleviating some of the discomfort, but it never does. Not to mention, the days my BP doesn't produce the "typical" amount of stool (OMG! I want to vomit, just typing this), I almost always end up having an accident, which to me, is further proof that's there's just no way my body would let me get away putting BP off, an extra day. In fact, it's been suggested to me by several people, that I ought to go back to having BP every day (like when I was living in the nursing home). I definitely had less instances of incontinence, when I was having BP daily. However, I'm at a point where I literally rather die, than go back to having BP daily.

Mariam said that she thought it's a possibility that the nurses working with me, aren't being aggressive enough, in their techniques. She and I talked at length about this, and she explained to me about having two sphincters, and the importance of the nurses putting the suppositories "up," high enough and how crucial the stimulation process is. To be honest, it was a bit too detailed of an anatomy lesson for me, and I admitted that I try to be the least involved in the whole BP process, as I can, given the fact it's my own body. Normally during BP, I try to pay attention to the news, and distract myself from the ugly realities of my life. I love it when I know I'll have a nurse with me that knows me well, because it means I can be relaxed enough, to NOT have to discuss anything about the actual BP, or give instructions. When I'm with a nurse that I'm familiar with, I basically just let them "do what they need to do" and I zone out, and try and remove my thoughts from my surroundings.

Taking Mariam's advice (knowing deep down that I need to be control and directing my care), I decided to bring up some of our discussion with my nurse, to make sure she is in fact doing everything correctly (which I was pretty sure she was). She acknowledged all of the important points, and said she'd be more than happy to try her best to speed things along. The thing is, there's often times when my nurses (including the nurse I spoke with) have told me that they've been "up there," and couldn't feel a thing. Then later that same day, I'll end up going more. So basically what MY nurses have to do, is determine when I'm "done" based on quantity, and not only just by what they feel. Sometimes they'll even have to use a second suppository to "get things moving." When it's all said and done, I never feel comfortable (meaning, not being paranoid about having an accident) unless I've gone a certain amount. It ends up being a waiting game. The nurses keep checking, and stimulating, until I "go" that certain amount. It's awful. Regardless, I'm usually always paranoid of accidents. Partly because they have happened randomly, even after a "good" BP, and secondly, because the threat is always there, and the trauma of it happening once, has been enough to keep me forever worried. It's pretty much become my worst fear, that I fear on an almost constant basis.

Before my accident, when I was around twenty, or twenty one, my mother had a scare, thinking she might have Chrone's disease. She ended up having a colonoscopy done, and was diagnosed with IBS (irritable bowel syndrome- aka spastic colon). I had always had bathroom issues myself, often suffering from diarrhea and almost always getting sick, if I was anxious, or upset about something. I decided to get myself checked out, around the same time, and was also diagnosed with IBS. I was given pills, that didn't help, and I stopped taking them. I never found any direct relation to food, or drink, but definitely believe there were psychological triggers. I can remember being sick to my stomach (with the runs) for every major event in my life. Not being unable to use public restrooms, and being highly sensitive about the matter, complicated having spastic colon, and I remember many days that I was doubled over in pain, because I HAD to "go," but couldn't bring myself to use the bathroom, wherever, or around whoever I was with, at the time.

Between my conversation with Mariam, and with my nurse, I got to thinking if maybe it's not so much my hemorrhoids that cause me so much discomfort, and make my bowel program seemingly so hard to manage and control, but perhaps it's the fact that I still have IBS. It's not that I've never had this thought before, but I always ruled it out, given the fact that I know my biggest trigger of my IBS, was always my emotions. I've always assumed, since there is no longer a conscious connection between my brain, and my ability to control my bowels, that IBS too, would no longer be an issue. I figured, if my emotions still ruled my IBS, then theoretically, I'd be able to use anxiety to my advantage, and will myself into needing to go. That most certainly isn't the case. I'm anxious/paranoid about BP specifically, 99% of the time, so based on that alone, I'd be "going" all the time. On the other hand, I wonder if my anxiety and IBS create more gas, and sensations of needing to go, that my body is interpreting as pain, and thus creating all the AD symptoms. It would explain a lot. I'm curious to know if anyone else with a SCI has had experience of being previously diagnosed with IBS, and if he/she has had any similar issues of AD and unexplained problems with BP and/or episodes of incontinence. I'm also curious to ask my doctor what he thinks. Unfortunately, there's no way to know for sure. One frustrating aspect of IBS, is that it's difficult to treat. It's even harder to try and treat something you can't directly feel. I'm grasping at straws, but it's an idea I'm curious I'd like to throw out there, and get some feedback on.

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"The Sea Inside"

2011-03-29T22:47:00.003-04:00

The other day I watched a very power movie, called "The Sea Inside." It is a Spanish film, that came out in the theaters, back in 2004. The story is based on the true, life story, of a quadriplegic man named Ramon Sampedro. He was injured in a diving accident (very similar injury to my own), off a cliff, nearby his home, into the sea. After his accident, he spent nearly thirty years fighting with the Spanish government, for the right to end his own life. The movie chronicles his uphill battle against the government, in a country, which is highly influenced by Catholic church. It depicts his day to day home life with his family, and caretakers, as well as the development of friendships, with two key women. One woman, named Rosa, is a local, single mother of two, who learns about his plight, through the media coverage of his case. The second woman, is a lawyer, who is battling with a debilitating neurological disorder, and decides to help him win his case, in hopes of securing her own to die, with dignity. Both women come to know, and love him, and end up helping him, in very different ways. In the end, Ramon gets his wish, despite losing the case, for the petition, to legally end his own life. The movie is extremely well written, acted, and touched my heart, and mind on many different levels. It is a story I can completely relate to, and Ramon's view points, and philosophy on life, are very similar to my own. If he were still alive, I'm sure we could talk for hours on end, about the cruelties of paralysis, and how important the quality of life is. I think if there's a heaven, we might become good friends. I'm interested to read his book, which was published shortly before his death, and am inspired by his tenacity and courage.

One of the things that struck me most about the movie, was the interpersonal relationships, between Ramon, and his family members, and the different dynamics each of them shared. It was insightful for me, and hit very close to home, to see the pain and anguish that his family members experienced, do to his injury, and the different way each of them coped, with having to help him, and also each of their varying attitudes, towards his wish to die. An especially poignant scene, is where his ailing father, who is normally very tightlipped, and somber, says something to the effect of "it's hard enough to lose a child; it's worse to watch a child, that wants to die." It's evident how much his father has suffered, watching Ramon suffer, and the feelings of frustration, and inadiquicy that must come along, with not being able to help his son heal. He is also torn between, his two sons, who argue bitterly, over Ramon's injury, and its impact on the family, as a whole. Ramon's older brother Jose, clearly feels resentment over his brother's life, and care being a burden and strain on the family, and yet he is the one most adamantly opposed to his brother's wishes to die. I found it interesting, that although he clearly blamed his brother for having a negative impact on his life, he seemed most affraid, and hesitant to let him go. I can't help but wonder, and compare my own situation, to Ramon's and think about all the stress, tears, and suffering my accident has caused on my family. Despite their spats, it was clear that Ramon was very loved, and well cared for. In fact his sister-in-law, Manuela, serves as his primary caregiver, and doted on him, as if he were her own child.

Ramon's case became a big media blitz, and caused a bit of scandal, given the influence of the Catholic church, and it's roots, into the heritage, and history of the Spanish goverment. One point in the movie, a Catholic priest, who was also quadriplegic, decided to make it his mission, to "save" Ramon, by going to see him, and try to persuade Ramon to change his views on living life, despite paralysis, and publicly suggested that perhaps it was just that Ramon lacked love and compassion, and that his petition for the right to die, was just a cry for help. Naturally, his comments both offended, and deeply hurt his family, whom loved him very much. Like myself, Ramon felt that this life is not a quality life. He believed like me, that it is a second best, compromise of the lives we once had, that strip of us of our freedom, and dignity. He was not happy with settling for life with paralysis, and neither am I.

It is not that I (or Ramon) don't appreciative the love and compassion my family and friends have for me, but love alone is not enough, to take away the physical and emotional pain that comes along with having to live such a limiting, unnatural way of life. Wanting to die, has nothing to do with lacking love, and/or support. Ramon's family was deeply invested and involved in Ramon's overall health, and well being. He had many interested, caring friends. I too have an abundance of love, and support. I am blessed with a strong network, of family, friends, and medical staff, to support me, and provide me with the best possible care, given my condition, and my limitations. I am grateful for the love, and interest my loved ones take in helping me, and being there for me. Unfortunately, love alone, is not enough, to counter balance the physical suffering, emotional trauma, loss of indepedemce, and losing the life I once had. There is nothing, short of a miracle, and/or cure, that can give me back (some of) what I lost, and make up for all the suffering I endure. Neither is very probable, or likely to occur, within the near future (or realistically speaking, even within the next decade.) I understand Ramon's wish to die, and respect his decision.

Its not to say I think all quadriplegics should die, or that their lives aren't worth living. I can only talk for myself, as did Ramon. He was not satisfied with having to endure the indignities that we're forced to face every day, every second. We don't get a break, and all the love in the world doesn't heal this type of injury. It doesn't take away the fevers, the cold sweats, the lack of privacy, or independence. Ramon's attitude was based around the idea, that each individual person has their own threshold for suffering, and while one person might find satisfaction in living dependent on others, and/or machines that, that low standard of quality of living should not be forced upon those of us that have to live it. After all, only Ramon knew what it was like to live in his shoes, and the personal hell that he had to endure, for almost thirty years, against his will. For me, and Ramon, paralysis is worse that being a prisoner. We are being punished, by being forced to live through unnatural means, against our will. That isn't fair, nor is it humane.

I can't speak for other quadriplegics, I can only speak for myself, about my struggles and the physical, and emotional impacts that paralysis has had on my life. I don't judge people who want to live this way, by calling them crazy, for giving in, for settling, for enduring, despite all the pain. I only know what I lost, what memories haunt me, what standards I hold myself to, and what brings me joy and fulfillment. It's easy to judge, when you don't have to deal with a fraction, of what I (or Ramon) went through, and in my case, continue to endure. No one has to sit every day, battling my inner deamons, frustration, disappointment and disgust, over the way I'm forced to live, but me. I think everyone should have the right to determine their own level of worth, and value, in terms of living, versus suffering. Let me worry about my own soul. Let God be my judge, instead of presuming his/hers/its purpose for my life.

Unlike Ramon (who cleverly had a chain of people prepare him a glass of water, mixed with poison, which he ingested, through a straw, on camera), my conscious would never allow me to jeopardize someone else's freedom (by making them criminally liable), or share the burden of the responsibility, for my death, by asking friends, or loved ones, to carry out, my wish to die. If/When the time comes, that I've reached my threshold, and can no longer continue to suffer, as I am, I will choose to excersise my right to refuse nutrition/hydration. It will not be quick, like Ramon's death. It will most likely, be days, or weeks, of slowly waiting to die. Although it might be painful for my loved ones to witness, it is the only option, that safeguards my loved ones, and keeps all the blame with me. Personally, I don't view my refusal of help, as suicide, rather the natural progression of nature. I feel as though my life is being sustained through artificial means, and do not find joy, or quality, in the lifestyle that paralysis has forced on me. I don't see my refusal of nutrition/hydration, any differently than my refusal to want to be hooked up to a vent, feeding tube, colostomy, or any other artificial life support. Right now, people act in place of machines. Either way, I'm unable to fend for myself, and would have died long ago, if I "left my life into God's hands." I think it's bad enough, I'm forced into a corner, where my only options, are to accept this low standard life, full of chronic illness, and no cure in sight, or have to starve to death. We treat our pets more humanely, and like Ramon, it really pisses me off, that God & religion, have such a strong influence, over laws, in a country where church & state, are meant to be separate.

During his campaign to die, Ramon befriended and fell in love with one of his lawyers, Julia. She was suffering from a degenerate neurological disease, similar to MS, and in my opinion, used Ramon's case, to give herself peace of mind, and as a selfish means, to try and use Ramon's case (in the event the government granted him permission, to die by lethal injection) as a precedent, to be able to end her own life, with dignity, before her disease effected her ability to reason, and/or memories. Whether intentional or not, and despite the fact that she was married, she toyed with his emotions, and even went so far as to help him write, and publish his book, and promised him that'd she'd personally help him carry out his wish to die, and die alongside him, once his book was published. Instead, she backed out of the deal, by letter, leaving Ramon, more heartbroken and suffering, than before she met him. Ultimately, it is a local woman, named Rosa (who fell in love with him, became his friend, around the same time period as Julia), who agrees to take the pivotal part, in helping Ramon, realize & carry out his plan to die. It is ironic, that during their first meeting, Rosa goes to meet him, in hopes of inspiring him to find a reason to live. Over time, she came to love and respect him, and finally understood, that the most loving gift, she could give him, was to recognize his suffering, and respect his wish to die.

Like Ramon, my wish is for people to understand how much I'm suffering, and to also respect my wish to NOT want to live THIS way. It is not a normal way to live. It is not easy, being 100% dependent on others (I find it frustrating that some people could accept & respect my wishes, to not want to be dependent on machinery, but yet expect me to accept being dependent on people). Being dependent on others is in many ways harder than being dependent on machines (which I have been), because there is shame, guilt, and judgement, involved in having to reveal yourself and be cared for by people. It is degrading, embarrassing and humiliating to have to be bathed, clothed, and fed, like a baby. It is extremely hard having to accept help, and share your private, personal space, when you have lived and are accustomed to being, an independent, self sufficient person.

Ramon was right, in that "this life has no dignity." I don't think that it's fair that such a low quality standard of life be forced upon people. I think people SHOULD have the right to die with dignity, and peacefully, if all life offers them, is a life of chronic illness, and suffering. People with incurable, debilitating diseases, shouldn't be forced into living UNNATURALLY long life spans, just because there are resources and means available to extend their lives. People like me & Ramon, should have a humane option, out of being otherwise, prisoners in our own flesh. I'm not saying that everyone in my shoes would chose to "opt out," I'm just saying that sometimes ending a life to prevent prolonged suffering, is more humane, than forcing someone who would otherwise be dead (because they can't care for themselves), to live and suffer.

My hope is that, if I do choose to one day stop accepting help, that those people closest to me understand my reasoning, respect my decision and know that I tried to live THIS life, for as long as I possibly could, for their sake (I do not go through all this Hell for myself. That point has come, and gone, a very long time ago). I hope that my loved ones will forgive me, and know that it is not for lack of love, that I want to leave them, but out of exhaustion and being tired of suffering. I wonder if Ramon's family have forgiven him, and have been able to move forward without him. I wonder how well, or poorly they coped with his death, despite knowing his wishes, and witnessing his suffering. I wonder if there is a heaven, and a God, if Ramon is there, beside him/her/it. I think if God exists, he/she/it will weigh the suffering, compassion, and generosity, of people like myself, and Ramon, and consider the amount of good a person has done, against the bad, and that a loving, all knowing God would forgive people, in our situation, for wanting to leave THIS life behind.

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Planning Ahead, Because You Never Know.

2011-03-28T01:39:00.005-04:00

I've been doing a lot of research lately, and thinking about my wishes, in the event I get sick, and/or die. I realize this subject matter seems morbid, especially among my peers (people in their late 20's, early 30's), but after everything I've been through, I know how important it is to consider these types of things, and put your wishes down in writing. Reality is, life is unpredictable and it doesn't matter how young, or healthy you are, for life to take a drastic change. Spinal cord injuries, diseases (like MS, Parkinson's, ALS & Guillain-Barre), traumatic brain injuries, or tumors are all examples of things that can hit a person off guard, and severely change a person's life, practically overnight. I think once a person turns eighteen, everyone should seriously consider creating a living will.

Shortly after my accident (I was twenty-four), I needed help, to take care of all of my financial responsibilities, notifying my employer (I had a few weeks left of teaching, before summer break, and had lined up a bar tending job for the summer, which I was supposed to begin that following Tuesday), canceling a cosmetic procedure I had scheduled for the end of that month, breaking my lease, packing up my things, selling my car and closing down my apartment. Obviously, since I was an adult and unmarried at the time, I had to authorize someone to make decisions for me, and give them permission to handle all of my affairs. I chose to give power of attorney to my parents (dad & stepmom). They made a lot of choices, and did a lot of things that I was unpleased with. At the time, I was in no state to be fighting, was terrified, and in shock. My whole life that I had built, up until that point, came crumbling down, at lighting speed. It sent shockwaves through my entire family, and the burden of it all created a tremendous amount of stress, and grief for everyone involved. It created a ton of tension (putting it mildly) between my parents, myself, my boyfriend and my mother and my stepdad's family. Many horrible words were said, and tears were shed. To this day, it has created a wedge between me, and certain members of my family.

Although I'll never agree with many of the things my parents said and did, I do recognize that they were under an insane amount of pressure and put in an extremely awkward position, by having my life, literally dumped into their hands overnight. They had to process losing the daughter they always knew, and the realization that all my dreams would be shattered forever. They knew, as did I, that they were the only ones in the position to take care of everything that needed to be done, on top of maintaining the responsibilities of their own lives (house, jobs, bills, etc.). It was a horrible situation, for everyone involved. Looking back, I wish I would've thought about my wishes, quality of life, and have put those wishes in writing. My parents never asked for the burdens my accident created, and I never want to go through the heart ache and misery that I went through. They handled my affairs much differently than I would have, and it caused me a lot of additional suffering. That said, I think they did they best they could, at the time. Everyone deals with trauma differently, and I try to always remind myself that I backed them into a corner. Someone had to take care of it all, and as an adult, I couldn't just give POA to everyone close to me. They were my closest next of kin, that was capable of doing any of the big issues, that needed to get done. I never want to have to place that type of burden, on ANYONE, ever again. My life is my "mess."

I also don't ever want to be in the vulnerable position of having to have other people make decisions that greatly impact my life. I don't want to place the burden of making those heavy decisions on my loved ones, and put them in the position of guilt, or blame, because they do something wrong, or go against my wishes. I also don't want my loved ones to be in the dark, or possibly pitted against one another (which did happen) because they don't know what my wishes are, and have to guess, or wing it. If I had seriously thought about worst case scenarios, and had had a living will, and an emergency plan put in place, I could've avoided myself & my family A TON of heartache and drama. As for me, I could've spared myself the hell that living with paralysis has been. I could've died, back then, when I was still in ICU, running ridiculously high fevers, and hooked up to life support. Death would've been very easy then.

I clung onto life, the first year or so after my accident, out of fear, shame and ignorance. I was terrified by the thought of death, because I hadn't accepted the notion of my life never going back, to the way it was. I had false hope, and denial over the realities of my situation. I was also (still am) ashamed at my mistake, and how stupidly I'd destroyed my life, and ruined everything I had worked so hard to build. I think I was in a numb state, of grief and denial. Hope of a cure and belief in the power of my will helped me make it through the hospital and nursing home. Reality has set in for me, and this life is not a life I would've chosen, if I had TRULY believed what the doctors had told me. I just wanted so badly to fix my mistake, and make everything better again. I really thought if I tried hard enough, I could beat the odds, and be a miracle. In that respect, I've been a complete failure, to myself, and have never felt as though I have redeemed myself for all that my mistake took from me, and all the pain I put my loved ones through.

I've made many conscious efforts since then, to take control back over as much responsibility as I possibly can, and make arrangements so that the next time I go knocking at death's door, my family will have the least amount of burden possible, and I have the peace of mind, in knowing MY wishes will be carried out. There are people in my shoes (and worse) that find satisfaction with their lives, as quadriplegics. I don't. To each his own. Personally, I don't feel this is a quality life. There are certain measures, or extremes that I'm not willing to endure to sustain the life (not on top of my already difficult situation), like having a tracheotomy, or colostomy. I refuse to live that way, and have laid out the dos and don'ts, for when I can no longer speak for myself. I have a living will (which I think every adult should have), so none of my loved ones will ever have to guess, or stress, over making decisions that effect my quality of life. I have a last will & testament, so I know, the right people will get what I want them to get. There won't be any room for fighting, or debating, because I've laid everything out, regrinding my possessions, and what I want to happen with my remains.

We don't currently have a program in NJ, but several states have initiated POLST (Physician Orders for Life Sustaining Treatments) programs, where patients can work in conjunction with their physician, to create a plan of action, or non action, based on the patient's wishes. They can serve in conjunction with a living will, and clearly spell out issues like, feeding tubes, IV hydration, pain medications, and other life sustaining machinery and treatments. I think it's worthwhile for everyone to take the time to consider these types of issues, for themselves, and put them in writing. Living wills, and last will & testaments are easy to create, and relatively inexpensive. It is well worth the ten, or twenty minutes it takes to fill one out. You never know when you might need one, and it's better for you (and for the sake of your loved ones) to have one put in place in the event something happens, and you can't speak for yourself. It's also important to be able to discuss your wishes openly, with your loved ones and doctors. You should make sure you know your rights and simple documents, like living wills, POLSTs and last wills, can ensure your rights are protects, and your wishes are carried out. Food for thought.

Info on POLSTs- http://online.wsj.com/article/SB10001424052748703327404576194942197661606.html?mod=WSJ_LifeStyle_Lifestyle_6

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Autonomic Dysreflexia, or Not Autonomic Dysreflexia?

2011-03-24T21:34:00.003-04:00

I have a C4/C5 complete injury, since June 2005. I suffer from autonomic dysreflexia symptoms A LOT. I deal with cold sweats, and chills on a daily basis. For the past two years, I've been suffering from this mystery chest pain/pressure. My doctors have done numerous tests, always ruling stuff out, but never coming up with any concrete answers besides, "it's probably neurological." No DUH?! Ya think? They've taken blood, X-rays, CAT scans, an EKG, ultrasounds and sonograms. My heart and lungs results always show as fine. I do have a history of DVTs (deep vien thrombosis-aka blood clots) in my left leg, which is common, and we (my doctors & I) decided against keeping me on blood thinners, since I have a filter, already in place to prevent clots from reaching my heart, or brain. All of my major organs, including my gallbladder have showed up as norma. With the exception of anemia, and the obvious, paralysis, every tests my doctors have given me come back "norma." So, I can't help but wonder if it's all just "normal," for someone in my condition.

The thing is, in order for these symptoms to be classified as autonomic dysreflexia, I thought there had to be an accompanying rise in blood pressure. Most of the time, my blood pressure & heart rate are fine. Yet I feel like I have the flu, almost constantly. I realize that some of my symptoms mimic having an UTI, but come on, can I really ALWAYS have a UTI? Since I have a supra pubic catheter, there's always a certain amount of bacteria in my urine. It seems almost impossible, to ever know for sure, what's wrong. I feel like UTI ends up being the scapegoat diagnosis, for all my problems, and the doctors way of getting around saying, "I have no clue." That's not to say my doctors are "bad," or don't know what they're doing. I've been to specialists, and the thing is, they can only do so much. They have to base their diagnosis, on my descriptions, which are of secondary, seemingly random symptoms. I'm sure it's as equally as frustrating for them, when they can't provide me any relief, or figure out the source of my symptoms.

I try to avoid antibiotics. They reek havoc on my bowel program, not to mention, constantly taking them, just breeds stronger bugs. My doctor & I have come up with a few possible reasons for all of my "sick" symptoms, that include: hemorrhoids, stomach ulcers, and gas. The symptoms vary, slightly, from day, to day, but I suffer from at least a couple, EVERY DAY. The chest pressure builds up randomly (I haven't been able to correlate a direct link to food, or time of day) and subsides a LITTLE when I lay down, versus sitting up. The fact that the pressure is usually worse when I'm sitting up, it makes sense that it could be hemorrhoids, since that's when there's more weight being distributed to my bottom. The other batch of symptoms I get include: cold sweats, chills, phantom sensations in my legs and feet, this odd, gross tingly sensation, all throughout my body, fevers and aches. I usually chalk them up to AD, but like I said earlier, my blood pressure is often low, or normal, while I'm experiencing these symptoms. My question is, are these symptoms really AD, or just freak neurological impulses, thanks to my screwed up spinal cord? I've experienced classic AD symptoms, like profuse sweating, goosebumps, and killer headaches, when my catheter has been blocked. In these instances, my blood pressure definitely did spike, and decrease, once the obstruction was cleared. I think the gas theory makes sense, since it's pain I can't feel, but I've tried products like Gas-Ex & Beano, and never get any relief. My diet is full of veggies, and fiber. It doesn't vary that much. I take the same dose of BP related meds, every day, and have BP every other day, so it's not like constipation is the cause. I do notice the cold sweats and goosebumps during BP, but figure that makes sense, since the stimulation is directly agitating the hemorrhoids. It's a vicious cycle, with the only solution, being a colostomy bag. If I've said it once, I've said it a thousand times, I will absolutely not consider getting a colostomy.

I take Pepcid for my stomach, so that should theoretically help with all the medication I take. If it is always gas that's the culprit, what can I do, besides what I'm already doing? I use topical treatments, and suppositories for the hemorrhoids, but considering I have to have a BP, I'm wondering if there's any other remedies, I haven't tried. I know from reading things online, that hemorrhoids, are quite common, among spinal cord injury patients. I'm wondering if anyone else, in my similar situation experiencing similar symptoms, due to hemorrhoids.

Other than the hemorrhoids, I have noticed a correlation to my period and feeling sick. When I was first injured, I didn't know I had my period, unless my caregivers told me. These past couple of years, I consistently run fevers, have cold sweats and aches, around the week of my period. I'm wondering if this is "normal" among women, with high level spinal cord injuries. I'm also curious, if perhaps I'm experiencing stomach cramping, that I can't feel, and that my brain is interpreting it as these AD like symptoms, even though my blood pressure isn't effected. I had a recent GYN exam, and everything was fine, but it HAS to be more than coincidence that my flu like symptoms increase like clock work, every month. My aunt suggested that I go on one of the birth control pills, that limits the number of periods you have, to a few times a year. The only problem with that idea, is that I'm worried about the possible weight gain, that taking birth control pills tend to cause. I watch my weight carefully. Considering I have little, to no functional movement, that also means having no means of exercising, to shed extra pounds. I already count calories, so I'm very hesitant to risk taking something, that may very well, make matters worse, or not help at all. I don't know many women with high level spinal cord injuries, but am hoping that someone might read this, and be able share their insight, about how their menstrual cycle has changed, or caused AD, since their injury. I never had much complaints, with cramping, or PMS, when I was on my feet. Now, I can't even feel my period. I just know I feel worse than usual, when I have it. I don't know if it's just a change based on aging, or something related to my injury. It's so hard finding concrete solutions, and/or answers.

The fevers and chills are the worst, of all the symptoms. The fevers I get usually start around dinner time, and last well into the early morning (2-4am). I've read that the onset of fevers, later in the day is common. I'm wondering why that is, and if it's just my body's way of expressing exhaustion. I almost always know when I have a fever, because I start to feel extreme fatigue. As soon as I start feeling tired, I usually ask someone to take my temp and I'm almost always right. The fevers are low grade, usually ranging between 99-100.5 degrees Fahrenheit. The weirdest (and most frustrating) aspect of my near daily fevers, is that they don't subside easily. I almost always take Tylenol, or ibuprofen, and lately, not only do the fevers NOT drop, they've actually INCREASED. I'm not sure how else to combat the problem, besides taking pills, and having someone place cool rags on my forehead. It's exasperating, having fevers so often, and having no obvious cause, or solution. Almost every night I start off uncomfortable, with just a sheet covering me, my fan on, and I toss and turn my head, because the discomfort prevents me from falling asleep. Some time during the night, once I've finally fallen asleep, my body cools down. By the morning, I've usually switched over to freezing, and have to have a heavy comforter on me. It's a horribly, redundant, annoying pattern. I know people with high level spinal cord injuries are extra sensitive to ambient temperature. I'm wondering if other people with high level injuries suffer from fevers, as often as I do, and if so, what theories they might have regarding causes/solutions.

Whether or not my chronic "illness" is caused by AD, or not, I'm just trying to see if anyone else out there is experiencing similar symptoms, and if so, if they've found anything for relief, that I haven't already tried. I'm constantly battling depression, and anxiety over all the loss and trauma that my paralysis has caused. Although I'm seeing a therapist, and take several medications, to help cope with the psychological impact that paralysis has had on me, it's extraordinarily hard finding joy, when I'm constantly feeling physically sick. If I could alleviate some of the physical discomfort, it would certainly have a positive effect on my mood, and make it easier to find reasons to move forward. Honestly, I feel as though (based on experience in dealing with doctors, and knowing my body) most of the discomfort is rooted in my spinal cord injury's, overall impact on my body, and the natural progression of time, given the insane amount of change and stress, my body has physically gone through.

Bowel program alone, seems to cause as much discomfort, as it causes. Unfortunately, it''s something I HAVE to have, in order to keep me alive. Obviously (besides the birth control option), there's nothing I can do about having a period. So really, I'm just trying to pin point what is causing what, and find out if there are other people out there, experiencing similar symptoms. From a medical perspective, I'm curious to know if fluctuating blood pressure, is the only qualifying characteristic to tell for sure if a symptom is AD related, or not. I often feel like my injury has condemned me to a life a chronic illness, that is just part of living with paralysis. Living this way, is certainly not normal. I have to rely on bp, medications and being dependent on others, just to stay alive. Those three things are a given, based on my condition. Having no cure in sight, makes the thought of having to live this way forever, seem hopeless. Every year, I seem to get physically worse, and therefore feel emotionally more desperate to escape. I want to know if all that I go through, is REALLY just TYPICAL, given my injury, or if it's just me. Any suggestions, shared experiences, feedback and/or ideas would be greatly appreciated!

Gaming By Mouth

2011-03-18T14:43:00.003-04:00

I'm quadriplegic (C4/C5 complete) due to a swimming accident in 2005. Before my injury, one of my favorite hobbies was playing video games. I'm thirty, and have been a gamer practically my entire life. The first gaming system I ever owned was a color computer, that hooked up to the TV and used huge eight track like cartridges. This was back around my kindergarten days, and I can remember using a simple joystick to play the Sesame Street educational games and a face maker game that I had for the system. My dad's a computer programmer. He had built his own hard drive at the time (1985), as well as owning an Amiga computer. I can remember being one of the only kids with a computer at home, in those days. We even had a color printer, with the old fashioned style paper, that had the holes down both sides & the perforated edges.

I remember learning "Basic" language in school, and using actual floppy (6 inch, skinny, floppy & square) disks to store our information. My second computer was a Comodore 64, which my brother handed down to me. TheComodore used floppy disks and Basic commands to "run" each game. It used simple joysticks to play the games, with one button. Some of my favorite games were: Quix, Friday the 13, Mission Impossible, B.C. Quest for Tires, Up & Down and Apple Cider Spider. At the time, my brother had the original NES. Both systems had hundreds of eight bit titles. Between the two of us we had dozens of games for each system. I can remember my best friend and I playing video games for hours! Growing up my friends and I also played outside a lot, played board games and with toys. Although we liked video games, our time glued in front of the television was more well balanced than it is for most kids today.

By the time my brother gave me his NES (around 1990), most of friends had one too. I fell in love with many of the Nintendo characters (Mario Bros., Yoshi, Toad, Princess Toadstool, Kirby & Zelda), and have been a loyal customer and fan ever since. When Super Nintento came out, my parents refused to buy it. I saved up my two dollar a week allowance and bought it for myself. I remember being so proud going to ToysRUs and handing over my huge wad of singles! SNES was a 16 bit console with a four button controller. It's funny, looking back, at how amazed I was by the graphics. I can actually remember saying how "real"' the graphics looked, which seems silly, compared to today's graphics. SNES remains to be my favorite console of all time, with some of my most loved games: Earthbound, Zelda: A Link to the Past, Super Mario World, Super Mario RPG, Tetris vs. Dr. Mario, Mario Kart, Bubsy and Donkey Kong Country. I've owned almost every Nintendo gaming system and/or handheld, with the exception of the most current system, the Wii.

At the time of my accident I had the three most current gaming systems at my apartment (I owned Gamecube & Xbox and my ex-boyfriend owned Playstation 2). I enjoyed playing games by myself and with friends in my spare time. In fact, the night of my accident I had been playing my Gameboy Advanced SP, just hours before I was injured. Gaming has been a favorite pastime practically my entire life. Despite my disability, I continue to enjoy gaming, by playing games with a mouth-stick.

Last year, I read about an amazing paralyzed professional gamer, named Randy that plays with his chin and mouth. Like me, Randy has been a gamer almost his entire life. Unlike me, Randy was born with his disability, and has only ever played by chin & mouth. Being a fellow gamer, and having had the experience of gaming with two hands, versus playing by mouth, I'm completely blown away by Randy's level of skill and the complexity of the controllers he uses. I consider myself to be a pretty good gamer, but certainly not good enough to go toe to toe, or in mine & Randy's case, mouth to hand, versus professional gamers. I'm in total awe of his amazing skill! "I'm not worthy" *bows head* LOL!

Personally, not being able to use my hands limits me to certain type of games. Given the fact that I can't hit multiple buttons at once (using a mouth-stick), I can no longer play most console games. The modern controllers have way too buttons and the games rely on complicated combinations. The way Randy plays is a bit too much work for me. I'm satisfied with the balance and selection of games I've found. The mouth-stick I use to type and use the computer is about twelve inches in length, with a plastic mouth piece and rubber tip (like a pencil eraser). Most of the PC games I play rely solely on the mouse (I use a trackball style mouse. The rubber tip of my stick makes rolling the ball easy). I use built in short cuts, like "sticky keys" and "click lock" in the control panel settings, to allow me to be able to drop, drag and highlight.

I started using a mouth-stick to play video games during my stay in a nursing home (2005-2007). A buddy of mine turned me on to a MMORPG (Massivly Multiplayer Online Role Playing Game- other examples include: World of Warcraft, EverQuest & Guild Wars) called Maple Story. For those of you not familiar with MMORPGs, they are games in which you create a character/avatar, usually a specific class within the game, in which you play with other people, in real time. They are like virtual worlds, where you can explore, form guilds, complete quests, chat, and play with friends, or people you meet within the game. They usually have loose story lines, that allow you to have freedom to play the game how you want. In fact, quite often people end up meeting up in the game just to chat & socialize with fellow players. I've met a lot of nice people, over the years playing Maple Story and even met a few of them in person (My friend Naama-aka Jane-stayed with me and went to one of my exhibits, back in 2009, traveling all the way from Israel).

As cheesy as it might sound, playing Maple Story contributed greatly to me being able to survive my stay in the nursing home, and keep my sanity. For starters, the style of the game is a classic side scroller, that uses the keyboard for controls. Allowing for customization of commands, let me arrange my keyboard so that I can hit the "jump" & arrow keys at the same time. The graphics are very animesc (I just invented that word) and reminiscent of many of my favorite Nintendo games. The whole look and feel of Maple Story fit right in with my tastes and playing gave me a much needed escape from the harsh realities of my life. Being able to socialize, and vent to real people, also helped to keep me distracted and helped keep me from becoming totally withdrawn and depressed. In the Maple Story universe, I don't look any different, from anyone else. When I meet people in the game, they have no clue that I'm playing by mouth, unless I tell them. As insignificant as that might seem, the fact that I could blend in and feel "normal" again, helped give me a confidence boost to be more social, and interact with people. Having been able bodied for the first twenty four years of my life, my disability brings with it a huge amount of body image issues, and I struggle a lot with how different I look in appearance, since my accident. To have the luxury of not standing out, actually made it easier to break the ice and talk about my injury, and my disability (in the article about Randy, it mentions him having similar feelings and about the sense of freedom that he feels, while gaming). It makes me feel good to be able to keep up and compete with my able bodied peers, within the game. Everyone I meet is always stunned and surprised when I tell them I'm paralyzed. It's hard for the average person to imagine how it is that I can type so fast, and how well I play the game. I usually jokingly say, "you should've seen me when I could use my hands!" I can only imagine how amazing a gifted player like Randy would be, if it were not for his disability.

Like I said earlier, for the most part, on the PC I stick to games that only require a mouse to play. There are tons of games that fall into this category, including many of the popular social networking connected games, likeFarmville, Bejeweled and SPP Super Poke Pets. My favorite genres include, hidden object (like Huntsville Mysteries), match three (like Jewel Quest), and simulation (like The Sims). Many of the games I play are for free, with optional features for purchase. Another great invention (besides the trackball mouse- which stays stationary, and requires you to move just the ball, instead of the entire mouse) that has widened the selection of games I can play, has been the touch screen. There are two types of touch screens, pressure and capacitive. I have games for both. The Nintendo DS uses a pressure based touchscreen, on which I use a knitting needle, attached to the end of a traditional mouth-stick. The hand held system comes with a small plastic stylus, however it's way too short & thin for me to use. The knitting needle tip, mimics the stylus tip and gives me the same amount of accuracy. I have over thirty games for my DS, that for the most part, rely totally on the stylus and don't require pushing any buttons (some have annoying microphone or button requirements, that I basically ignore, or get help with, if I can't, but that don't hinder overall game play).

The iPad uses a capacitive touchscreen, which uses the electricity in our bodies (literal touch) to work. Given the fact that my hands no longer work, I use a special stylus (called a Pogo) attached to the end of a mouth stick, which mimics touch. The capacitive fibers wear down over time, and need to be replaced, depending on how much you use them. There are tons of games available for purchase (many have "lite" version for free, to test games out) in the Apple apps store. As an artist, I also use my iPad to create digital art, in addition to using it for writing, reading and gaming. My iPad is almost as versatile as my PC, and I love the fact that I can sketch and create art on it. As far as the games go, the graphics and sound on the iPad are superior to that of the DS, and uses a much larger touch screen surface.

Below I've listed some of my favorite game titles/gaming websites, for each platform:

PC-
1. Maple Story MMORPG- http://maplestory.nexon.net/
2. Farmville- http://www.farmville.com/
3. SPP SuperPoke Pets! https://secure.superpokepets.com/spp/login
4. Big Fish Games- You can download & pay per game, or pay a subscription for full games. I enjoy playing "match 3" games & "hidden object" games. I enjoy: Huntsville Mysteries, Bookworm, Asami's Sushi Shop, Fishdom, Puzzle Quest 2 & 7 Wonders. All the titles I listed are mouse driven. http://www.bigfishgames.com
5. The Sims Series- http://thesims.ea.com/
6. Spore- http://www.spore.com

Nintendo DS-
1. Animal Crossing: Wild World- http://ds.ign.com/articles/673/673671p1.html
2. Mario vs. Donkey Kong series- http://ds.ign.com/articles/113/1134070p1.html, http://ds.ign.com/articles/735/735297p1.html
3. Final Fantasy IV- http://ds.ign.com/articles/887/887583p1.html
4. Final Fantasy: The 4 Heroes of Light- http://ds.ign.com/articles/112/1125729p1.html
5. The Cooking with Mama series- http://ds.ign.com/articles/733/733555p1.html, http://ds.ign.com/articles/837/837283p1.html, http://ds.ign.com/articles/103/1038659p1.html
6. Disney Princess: Magical Jewels- http://ds.ign.com/articles/831/831424p1.html
7. The Professor Layton Mystery series- http://ds.ign.com/articles/851/851856p1.html, http://ds.ign.com/articles/101/1017161p1.html, http://ds.ign.com/articles/111/1119632p1.html
8. Chrono Trigger- http://ds.ign.com/articles/932/932438p1.html
9. Fire Emblem: Shadow Dragon- http://ds.ign.com/articles/954/954421p1.html
10. Wario's Warehouse series- http://ds.ign.com/articles/587/587217p1.html, http://ds.ign.com/articles/107/1079712p1.html
11. Brain Age series- http://ds.ign.com/articles/702/702057p1.html, http://ds.ign.com/articles/813/813780p1.html
12. Dragon Quest IX: Sentinels of the Starry Sky- http://ds.ign.com/articles/110/1104879p1.html
13. The Legend of Zelda: Phantom Hour Glass (was very disappointed that Zelda: Spirit Tracks uses a button/stylus combo)- http://ds.ign.com/articles/822/822825p1.html
14. Pokemon Diamond (have to use buttons, but it is a turned based RPG, which makes that doable)- http://ds.ign.com/articles/782/782443p1.html
15. Yoshi Touch & Go- http://ds.ign.com/articles/595/595523p1.html
16. Age of Empires Mythologies- http://ds.ign.com/articles/933/933525p1.html
17. Harvest Moon DS Cute- http://ds.ign.com/articles/864/864320p1.html
18. Ninjatown- http://ds.ign.com/articles/924/924068p1.html
19. Gardening Mama- http://ds.ign.com/articles/969/969213p1.html

iPad-
1. Final Fantasy- http://itunes.apple.com/us/app/final-fantasy/id354972939?mt=8
2. Crystal Defenders- http://itunes.apple.com/us/app/crystal-defenders-for-ipad/id379052382?mt=8
3. Chaos Rings- http://itunes.apple.com/us/app/chaos-rings-for-ipad/id384090103?mt=8
4. Puzzle Quest- http://itunes.apple.com/us/app/puzzle-quest-hd/id398190768?mt=8
5. Color Cross HD- http://itunes.apple.com/us/app/color-cross-hd/id383300986?mt=8
6. Jewel Quest Mysteries: Curse of the Emerald Tear- http://itunes.apple.com/us/app/jewel-quest-mysteries-curse/id337188077?mt=8
7. Chop Chop Ninja- http://itunes.apple.com/us/app/chop-chop-ninja/id346877580?mt=8
8. Angry Birds series- http://itunes.apple.com/us/app/angry-birds/id343200656?mt=8
9. Smiles HD- http://itunes.apple.com/us/app/smiles-hd/id364871736?mt=8

Related Info:
1. Article about Randy- http://www.asylum.com/2010/04/13/amazing-pro-gamer-nom4d-plays-with-just-his-lips-and-chin/
2. Randy's YouTube channel- http://www.youtube.com/user/TheRealN0M4D
3. Video demo of me using my iPad (with Pogo stylus)- http://www.youtube.com/watch?v=H85Lb8Pyu9U&feature=youtube_gdata_player

Shitty Day

2011-03-08T20:46:00.003-05:00

Today has been a very shitty day, in every sense of the word. I hate to resort to vulgarities, but I feel as though it is the only word that can appropriately express the level of exhaustion and anger that I currently feel. I've been struggling more than ever to keep my sanity, and keep pushing forward, and today is a classic example, of the overwhelming tragedy and frustration that paralysis has thrust into my life. Despite my best efforts, I'm forever left feeling like a prisoner within my own flesh, and wanting anything to escape. I feel the need to share today's events, so far, to highlight the ugliness of paralysis, and shine a light on many reasons why living with paralysis has been, and continues to be so challenging for me. I'd challenge anyone to live through a few days like today, and still be able to be joyful and find motivation for wanting to keep living, paralyzed.

Today started like many mornings have, since my accident; sleepless and in pain. I spent the better part of last night uncomfortable, with cold sweats, chills, and mystery chest pressure, keeping me awake. I lie in bed trying to find comfort in the only position that doesn't hurt my shoulders (on my back- which is never how I used to sleep), and toss and turn my head, from left, to right, and back again. All the while, my mind is racing at top speed- apparently, the only speed I have- and I'm trying my best to ignore my discomfort. It's amazing how uncomfortable I can be, despite that fact that I can't actually feel most of my body. The little I can feel is full of annoyances, and the littlest of movements can trigger a leg spasm, move my hair out of place, create an itch I can't scratch, tense up my arm, or any number of stupid little things, that I can try to ignore, or call someone for help. I end up ignoring about half of my impulses, out of decency and consideration for my family/aides. Either way, most every night is a restless night, full of inner turmoil and despair. I can't help but beat myself up, over my accident and cling to the life I had. All of my memories bring with them a certain amount of grief, and I have yet to find a way to let go of what I lost (in both potential for the future and in reality). I spend most my nights trying to distract myself from negative thoughts, and find enough peace to fall asleep. Unfortunately, even sleep is not an escape, as many nights are filled with bad dreams, that make waking up seem somewhat better. I pray and pray, and ask God for a cure, to take me, and spare me the suffering, or at the very least, give me some measure of understanding, as to why my life has to be so difficult. In that respect, last night was the same as every other night since my accident; no answers and little sleep. Once I finally did manage to fall asleep, it was nearly 9am and my nurse was already on her way.

My nurse arrived around nine thirty, and so began my bowel program, most certainly my most hated aspect of life with paralysis. Bleary eyed, sick to my stomach, and depressed to be starting off my day in such a horribly violating way, I say nothing as my mom and nurse begin to strip off my adult diaper (wonderfully sexy garment) and roll me on to the sling. Next, it's time to get pumped up into the hoyer lift, and take the adrenaline filled ride, across the room to my most hated piece of furniture, my commode. It's impossible to explain to fear and mix of sensations that go through my mind, as my body is suspended in mid air, with no means of stopping myself from falling, or way to brace myself for impact. The hoyer lift makes me feel like I'm floating through the air (not in a good way), and unless you are paralyzed, it's hard to imagine how terrifying a small "ride" can seem. It is one small aspect of life that I've learned to tolerate, and although it makes me on edge, once I'm safely strapped into my commode, or landed in my wheelchair, it's not a big deal, and something that makes caring for me easier on my family/aides. As scary as it can be sometimes, it beats getting picked up and carried, which is usually more painful, and more dangerous, for everyone involved. Once I got strapped into the commode, the nurse wheeled me into the bathroom to begin the bowel regime. It's an awful necessity, that has never gotten any easier to deal with.

The only comparison I can think of, to accurately describe my feelings toward bowel program is rape. Although I realize that is a very strong word, with very negative connotations, hear me out. Before my accident, I was a very self conscious person (still am) and had many issues regarding the bathroom (still do). I was very private and couldn't stand the thought of using public restrooms, outside of my home, and a very few select friends' home to EVER "go number two." I can count on one hand the number of times that in almost TWENTY FIVE YEARS of my life on my feet that my IBS forced me into the shame and embarrassment of violating my own code of bathroom conduct. I find everything about poop, and feces related actions (aka-passing gas) humiliating, unladylike, and disgusting. If I had a choice, I'd negate the whole process all together, and have said many times, to many doctors, that I'd gladly trade in food, for a liquid diet, if it meant I could not have to "go" again. Obviously, that is not and option; I must eat and therefore poo. Having a spinal cord injury has made my worst fears a reality. It is truly Hell on Earth. Not only am I forced into revealing ever flaw, and every inch of my naked body, I'm forced into being violated on a near daily basis. Incontinence, and the anxiety over accidents, practically rule my life. I feel shame and embarrassment having to have other adult human beings not only acutely aware of my bodily functions, but up close and personal, in my face, and in my space, whether I want them there or not. I'm forced into accepting another human being, put their finger up my rear end, multiple times, every other morning, to stimulate my body into doing a process, it should be able to do naturally, and on my own. Personal space and privacy are luxuries that do not exist in my life. This morning, like so many other mornings, I had to make a "choice" to accept help, and accept having a bowel regime, despite my embarrassment, loathing, and revulsion to the process, because my only other alternatives are to become impacted, septic, and die, or have a colostomy bag strapped to my side (a bag full of the single most hated and embarrassing thing possible, in my mind). Do you really consider that a choice? I'm forced into accepting the bizarre, unnatural and repulsive, because the only choice, is to become sicker and/or possibly die. My paralysis shoves bowel program down my throat, and silences my voice, because there is no viable alternative. My body no longer answers to me, therefore I'm forced into answering to other people. Right now there is no cure. There's life; paralyzed. Take it, or leave it. That is my only real choice.

My list for reasons to want to die vastly outweighs my reasons for staying. The thing that keeps me here is fear. I don't have a strong faith in God (like many people have). Instead, I have a mountain of fear and doubt. I was raised Catholic, and although I don't believe in much of the religion, I do hope that there is a God. Catholicism is not a very flexible, open-minded religion, in my experience. I attended Catholic school for the first ten years of my schooling, and although I don't buy into most of the rituals and the emphasis the Catholic church puts on going to church and the Pope, the lessons I learned as a child, still have a hold on me. I wish that I had a strong faith in God, any God, because I have seen what peace of mind and strength that faith has given to other people. One of the reasons that turned me off to my childhood belief in God, was the rigidness of the religion I grew up. I consider myself to be a very open minded, liberal person, and those aspects of my personality make it extremely hard for me to believe in the triumphalist type belief system of most organized religions. I've read a lot about (and watched documentaries) about various religions. I enjoy history. I enjoy philosophy and the history of how religions were formed, and came to be. I've read a lot of the Old & New Testament of the Bible throughout my life. It seems absurd to me that God, an omniscient, omnipotent being, that has the capacity to create our entire universe, would be hung over petty rituals and/or the name by which we call him/her/it/them. I can't believe that if there is a God, that he/she/it/them would punish damn someone to an eternity of suffering, despite that person being kind, and good, because that person wasn't born into the right culture, time, or place, or didn't worship him/her/it/them by the right name. I can't stand that people are willing to hurt other people in God's name. It's horribly asinine to think that such a powerful, all knowing being, would want their/his/hers/its creation to waste its energy and time on hurting one another. If most people would be open minded enough to learn about other religions and consider each other, as equal, human beings, it would be obvious, that there are basic messages that transcend all faiths; to love one another.

Before my accident I probably would've classified myself as an Atheist. Now I guess I'm Agnostic. I'm not really sold on any particular God(s) or religion, but I do want to believe in something. Catholicism is very clearly opposed to suicide. Catholicism very clearly states that the only path to heaven is Jesus. I have a VERY hard time accepting both of those "truths." I have a lot of friends of varying faiths, that are good people, that contribute to society in positive ways and are kind to their fellow man. I can't bring myself to worship a God that would condemn my loved ones and friends to a firey abyss, just because they don't call him Jesus. If there is an afterlife I have to believe it's open to all good human beings and that if there is any judgment, that it's fair and just. I'll never be sold on the thought that God would care about insignificant things like clothes or what type of food we eat. My Catholic upbringing causes me to have a lot of fear and anxiety over what will happen to my soul, if I have one. I want to believe that God is not as rigid, jealous and inflexible, as Christianity, Judaism or Islam would have us believe. People say God only gives us what we can handle, but I feel like my life is proof that that isn't true. I can't handle the curve ball that life (or God) has given me. There are so many paradoxes, that keep me always doubting and questioning. I mean, if God loves me, how can he/she/it/them let me suffer? If God has a plan for us, then how can we also have freewill? I'm a logical, realistic person, that makes it very hard for me to believe. I know having faith means blindly believing, but it's not something I can force. On the other hand, the teachings that I was brought up with, very clearly state that I will go to Hell if I give up on life. The thing is, I feel like my situation is not average and I don't know whether God would consider not accepting help, as suicide. I'm not an able bodied person, putting a gun to my head, because my marriage failed, or I lost money in the stock market. My life is sustained by very unconventional means. I'm not healthy. I'm suffering.

It is my doubt and confusion over my faith in God and refusing help that keeps me here. Although I do feel sorry for family, in that I know they would be sad if I died, I feel as though I have already given them 5 1/2 years extra time with me, and I feel that my suffering has been sufficient enough to feel satisfied that I've tried my best, and given them my best effort. I think it would be selfish of them, and cruel to expect any more from me, and hope that despite their grief, that they would understand my death would alleviate my suffering. Besides, if there truly is an afterlife they can draw strength from knowing we'll be reunited. What stops me from giving into my wish to die, is my uncertainty over what will happen to my soul. It's horrible having anxiety over a soul I'm not even convinced I have. All I have is doubt. I'd like to believe that if God does exist, he/she/it/they knows my heart better than anyone, and knows how much I've suffered and how sorry I feel for wanting to give up. I'm don't think refusing help is the same as a healthy person committing suicide. Like I've said in a previous response, if I technically "left my life in God's hands" I'd be dead. I can't care for myself. I'm only here because the resources exist to keep me here. The problem is, I'm not happy. I don't consider this a quality life. I know I have talents. I'm aware I'm gifted in writing and art. The problem is, it's not enough. While I might have the ability to still do certain things, they're not enough to fulfill me. It makes me frustrated, confused and angry that everyone (including God-evidently) would be fine and respect the fact that I don't want to live dependent on machines. I can refuse a vent and get into heaven, but I if I refuse my bowel program, I'm committing suicide and will be damned to hell. Quality of life means more to me than quantity. Most people don't want to admit, or can't understand how awful my life is. No one would want my life for themselves. It seems very harsh to me that I'm forced to endure so much pain and that God would punish me, for not wanting to suffer. It takes A LOT to keep me alive; living a life I hate. The rules of suicide and what God would or wouldn't consider suicide, seem very unfair, confusing and ambiguous. It's fear and doubt that keep me here.

It's fear that keeps me pushing forward, on days like today, when I'm worn down and feeling like I'm forced into accepting horrible conditions. This morning during bowel program, I felt horrible. I was clammy, with cold sweat, and shivering with cold (phantom feelings of cold, in limbs I can no longer feel, on the outside). I wanted to disappear and run away, but I couldn't. Bowel program is the only option available (that I'm even unwillingly up to considering), to give me any sort of regularity and combat against incontinence. It is not natural. There is no privacy. Embarrassment doesn't matter. This morning I had the added discomfort of nausea, which is the only thing equally horrible to bowel program. There I sat, half nude, strapped to a chair, over a toilet, bent with nausea, no means to stop it, or way to clean up, no where to hide, no relief, and all the while I'm enduring my nurse forcing my body to expel what I no longer can. In that moment of nausea I wanted to die. I prayed to God to take me. I couldn't imagine my life any worse. Doubled over with nausea, and choking back tears, I felt I needed to get back into bed, and hoped that lying down would offer some relief. While having bowel program in bed disgusts me way more than doing it over a toilet, it's something I was forced to accept, every night, for the first year and a half, after my injury. Although I hated the thought of having to do it, anything that might take the nausea away, in that moment, was worth doing. I asked my nurse to call my mom in for help, and they rolled me back into the room, and hastily began getting me ready for the hoyer ride back to bed. Just as they started to lift me up, and I felt as though I would vomit, my body decides to defecate, all over my bedroom floor. My mom, and nurse, highly aware of how much this would upset me, rushed around and try to contain the mess, while at the same time get me safely back into my bed. By this point, I'm numb. This is the point where the mind starts to short circuit, because it just can't handle any more trauma. As the nausea subsided, I landed in my bed, and my nurse began to tend to me, while I watched my mother scrub my beige carpet, for the next hour, filled with shoulder pain. What could I do but just lay there and accept it? It's mornings like today that make me want to scream in rage, in the unjustness of it, and makes finding a silver lining to life, near impossible. Who would want this type of life for themselves? The only motivating force in my life to keep going, is often the fact that I feel like I have no other choice. I have to take it, or leave it for what it is, no matter how unhappy I am, or how much I hate the "choices."

It's days like today that make me question God's existence and what he/she/it/they think about my life, and make me question why I should have to continue living. It seems so cruel to me, that society and my religion (the belief system that I was raised with) expect me to endure living with paralysis. I feel like a loving God would understand my suffering and understand my need to escape. Surely, my Earthly parents love me as much as God does, and yet I know if they had it within their power, they'd have healed me right away. I can't even ask them to help me end my suffering, because society rather keep me living, no matter the price I have to pay. It infuriates me that our society (based solely on our laws) values the "life" of 3-5 day old cells (blastocysts) enough to not want to use them for research that could potentially alleviate my suffering, and that of millions of LIVING people, just like me. Our laws dictate that they rather see those cells be thrown away, rather than help me. That's how little my suffering matters, how easy it is to look away. We treat our pets with more respect, compassion and dignity, than we do people like me (people with extreme disability and chronic, incurable illness). I don't get the option to die peacefully. I have to suffer. I feel as though it is irrational and hypocritical to ask me, to expect me to, to demand I live this way. How can we put such a high value on something that has no chance at ever living (outside a womb), and turn a deaf ear to people that live and suffer, every day? How is it that we are compassionate enough to not want to see an animal suffer (when we know there is no cure and prolonged suffering is inevitable), but not enough to allow me to die in peace, with dignity and respect? Instead, I'm asked to live an impossibly difficult life, that no one would ever choose for themselves. Why can't I have the same rights that my dog and cat have? I can't help but feel outraged, and desperately sad, at how trapped I am. I feel like I'm stuck with choices I don't want to choose, and no way out. So here I sit, forced to somehow keep moving forward, while keeping my sanity. It's a predicament I wouldn't wish on my worst of enemies.

Taking Advice, Getting Feedback and Reasons For Sharing

2011-03-04T21:14:00.004-05:00

I've gotten quite a lot of feedback, from my last two blogs, which I originally posted in the CareCure (online community related to spinal cord injuries)forums. Besides the wonderfully kind words of encouragement, and empathy, two of the key issues that were brought up were, possible alternatives to some of my most difficult obstacles and suggestions based on personal experience. I really appreciate all the ideas, feedback, life stories and concrete answers that people took the time to write. A few of the issues that I would like to highlight, and expand on reasoning, are the issuses of personal hygiene and my reasons for being so open about my life; even embarrassing and/or painful aspects of life, that most people find hard to discuss.

The number one, hardest aspect of living with paralysis for me is all of the highly intimate hygiene issues that I need help with. One of my biggest stressors is my bowel program (as itis for many people in my situation) and the only real alternative, would be to have a colostomy. This has been suggested to me, both recently and in the past. The thought of a colostomy bag is (to me) 1,000 times worst than BP. Just the thought of it depresses me. No offense, but it's definitely not for me Ideally, not having to go number two in the first place would be my solution. Unfortunately, that's not possible. The whole bodily fluid thing really disturbs me & grosses me out. I'd literally give up eating, if it meant I only had to deal with urine. As much as I love food, I gladly trade in a liquid diet, if it meant I could avoid needing to ever have a bowel movement. That's how much I hate the whole process, in general. I know it's a natural bodily function, that everyone does. I've just always been uptight about it. I guess you could say I'm somewhat "poopaphobic." I don't want to have to do it, or be around it, so the thought of having a bag of it strapped to me, is probably the worst case scenario I can think of. I've always been very private about bathroom & hygiene stuff, so being paralyzed is horrible. I find it disgusting and unladylike. I normaly would've never wanted to discuss it (and find it challenging to be so revealing), but feel it needs to be said, because the average has no clue, and would otherwise (and often does) take this fact for granted. I'm forced into having help with bathroom needs and it's never gotten any easier.

Sometimes I think being a woman, makes it even harder to accept & not be embarrassed. I don't know, but all my guy friends (able bodied & non) are way more easy going & less bothered by stuff like that. I mean let's put it this way, I dated someone for almost six years (also lived together for a portion of that time) and I never once passed gas in front of him. In the 24yrs I was on my feet I never once went number two in a public restroom. So you can imagine, having BP & a catheter is pretty much like hell on earth for me. Not to mention, as a woman, I have to also accept help every month with my period & other various feminine hygiene issues, that men just don't have. All in all, the adjustment to needing help with all personal care ADLs has been difficult.

Just the fact that so many people have to see me naked bothers me. I've always been self conscious and have had body imagine issues. My paralysis has not only made my body even more flawed, and less appealing, it also forces me into showing those flaws to numerous people (on a daily basis), over & over again. Its mortifying having to have someone else do stuff like brush my teeth, shave my under arms, clean my ears, help me blow my nose, acne, etc. I used to go to great lengths (as do most woman- doing my hair, make up, creams, shaving, plucking eye brows, getting manicures, exercise & diet) to look nice and to feel good about myself and feel as though I was pretty. It's not only embarrassing needing help with all personal hygiene needs, it also undermines my dignity and self worth. I'm forced into revealing every flaw and forced into having to ask for help, to look nice and correct imperfections, that under normal circumstances would be totally secret/private. It's all very challenging.

Like I've stated over, and over again, I'm just looking into all of my options. Living with paralysis has not been easy for me, and I'm tired of chronic sickness. This is not my first bout of serious depression, nor is it necessarily my last. Living with paralysis is a daily struggle. Choosing to fight to live the life that I have, is one of the few things that is still within my control. I will continue to do so for as long as I possibly can. I'm just the type of person that likes to think ahead, and take comfort in knowing that I'm in control of whatever aspects of my life that I CAN control. Paralysis has robbed me of almost all of my independence, so I'm forever seeking new ways to take back whatever control I can. My mind is one on the few assets I still have, and although it can at times be a curse (haunting memories and crippling grief) it has allowed me to be able to manage my own affairs and make decisions about my care, and overall quality of life. My mind continues to be the greatest source of pain, and although I realize that my perspective, way of thinking, and acceptance can change over time, I'm the only one that can make those changes. I struggle daily with the inner turmoil, of dealing with the life and choices paralysis gives me, and my sadness and desperate longing to have the type of life I once had. I realize it's a battle that only I can fight.

Last week I was chatting with an online buddy named Mariam about being so depressed lately. She's also a member of the AMFPA. We share a lot in common, in fact she's one of the few people on the planet that I feel like can truly understand where I'm coming from. We're around the same age, both artists and both suffer from similar spinal cord injuries. She's been injured for almost fifteen years now, and is one of those rare gems, in that she's somehow been able to keep it together, keep moving forward and find joy, despite being paralyzed. I had reached out to her, sending her a link to the CC thread, to get her point of view.

We had a long chat over Skype, and I really enjoyed our conversation. It always feels good to vent, but I particularly felt relieved talking with her, because I feel as though she really understands where I'm coming from, and has experienced much of the same struggles that I'm going through. She's amazingly positive and is seemingly much more open minded and receptive to going with the flow, and accepting her life with paralysis, much better than me. She'd probably agree with me, in saying that her current state of acceptance, and/or her strength and perseverance, as well as her current frame of mind, all took time, and that it might not make sense for me to beat myself up, for not being as strong as she is. She readily admitted to me, that living paralysis has also been a struggle for her, and that she also experienced a period of about two to three years (around her five year anniversary), where she was extremely depressed and in a similar dark state, that I'm currently experiencing. She was obviously, able to overcome it, and although she has her bad days, seems more well adjusted and happy with her life, living with paralysis, than I can ever imagine for myself, at this point.

During our discussion, I was expressing my wish for being understood, and how little I feel the average person really knows, what it's like to be paralyzed. I said I especially wished my loved ones understood how much I'm suffering, and how hard it is for me to live this way. Mariam then asked me, "What if they did understand? What difference would that make?" It was the first time anyone had ever asked me that, but I immediately knew the answer. I had to hold back tears to answer her, but managed to respond with a shaky voice, and tell her the answer that's been tugging at my heart and mind for a long time now. It's a two fold answer, that has been my driving force.

Firstly, I feel as though if people really understood what it's like to live a day in my shoes, they'd absolutely want to find a cure. I know in my heart, with 100% certainty, that anyone who could experience the grief, loss, fear, and sense of powerlessness that paralysis causes, that they'd want to fight with every ounce of energy they had to want to cure it. I feel as though, funding for research and emphasis on finding a cure to paralysis would take precedence and support would sky rocket, if more people really knew what it felt like to be paralyzed and to really comprehend how ethereal life is, and that their lives can change, as quickly as mine did, at any given moment. It is for this first reason that I pour my soul out to strangers and open my life up to the general public. As hard and as embarrassing as it can be at time, my goal is education. I want people to wake up, and understand what being paralyzed means.

Secondly, I feel as though if my loved ones truly understood my pain, and could experience all that I've been through, and all that I'm feeling, that they'd be able to let me go. This second part to the answer is what I told Mariam, and is what most often crosses my mind. I feel as though anyone that truly knew my pain, would be able to understand why I long to be free (by death, or by cure) and be at peace to let me go. I often think people expect me to keep marching forward, because they don't (and can't) know what they're really asking of me, and what a struggle it is every day. Although my loved ones might see my death as something horrible, and sad, I'm at a point where I'm tired of the daily battle and would welcome it. I just want to be free again. It doesn't mean I don't love my family and friends, and wouldn't miss them. They just don't understand how hard living can be. It's my hope that by sharing my thoughts and feelings I can help everyone (anyone who is willing to listen) to understand paralysis better and to motivate others to fight for a cure. Even if I never see a cure, I would feel at peace knowing I helped to prevent other people from ever having to experience all that I've been through, if I can inspire others to support finding a cure. Although I have little hope for a cure for myself, I do still wholeheartedly believe that a cure will be found some day. Again, I don't wish to upset anyone. I'm just being honest and sharing my thoughts, and where I'm at, right now in my struggle with paralysis.

Check out my buddy Mariam's website- I love her work!
www.mariampare.com

- Posted using BlogPress from my iPad

It's Hard Feeling Happy, When You're Feeling Sick.

2011-03-04T21:09:00.003-05:00

As I mentioned in my last blog, I've been doing a lot of soul searching and actively seeking out answers to some tough questions. My state of mind is an ever changing battleground, where I find myself forever fighting to find reasons for why I'm suffering, and looking for motivation and purpose to keep moving forward. One of the biggest obstacles that makes living with paralysis such a struggle for me, is chronic illness and feeling physically sick. The near constant discomfort has left me feeling very worn down and has pushed me to examine my life very closely, and ask myself why I try so hard, despite my unhappiness, and if there are any solutions out there, and what all of my options are, regarding my life, as it is.

I recently discussed some of these questions with my doctor. He was kind of vague in his responses. He's a PA with a visiting physicians group. He sees me at home about once a month. Most of his patients are elderly. It gets frustrating at times (even when I go to the hospital) because most doctors (including mine) aren't specialized in dealing with spinal cord injuries. I feel like most of the time we're just playing a guessing game, trying to pin point why I'm feeling sick. Most of the time, I get told it's a UTI or possibly neurological. In other words, they don't really know for sure. Understandably, it's probably just as frustrating for them, because I can only tell them secondary symptoms (since I can't actually feel what's going on) like fever, chills, chest pressure, sweating, etc. Given the fact that I have a catheter, my urine specimens always come back positive for infection, so half the time I wonder if it's a UTI that's making me feel sick or something else. All we ever do is run tests, but never find anything concrete. Honestly, I don't know that a specialist could do much better. I'd just feel more confident if I had more access to doctors that had more experience dealing w/SCIs. The only place we really have in NJ for outpatient care is Kessler Rehab, which is an hour commute. It's just not worth going there, every time I feel sick.

Aside from the emotional trauma and dealing with an insane amount of loss, living with paralysis has been physically taxing as well. One of the biggest problems for me personally, is my ever diminishing tolerance for sitting in my chair. My ability to sit in my chair, be productive, go places (not that I'm often itching to go out) and do things, has gradually become more and more uncomfortable over the past couple of years. The discomfort and the chronic sickness has made it very hard for me to find joy in the things I used to. Ever since I had a bed sore (6cm wide and deep- at its worst- on my upper thigh, below my backside) back in '08 my tolerance for sitting just isn't the same. The first couple of years post accident I could comfortably be up in my chair for 8hrs a day, 7 days a week. Now, I get out of bed on bowel program days (which ends up being like 3 hours on a commode chair-for BP & my shower) and then spend the rest of the day in bed; sitting up in bed for an additional hour or so around dinner time. I try to get into my power chair on non BP days, but lately it all depends how I'm feeling. The thing is, I end up getting very uncomfortable in my chair after only sitting for a few hours. My symptoms vary, but it usually starts off with a clammy sensation, followed by weird tingling throughout my body, then further followed by a gradual pressure building up in my chest and/or abdomen. On top of that, I'm constantly dealing with leg spasms, phantom pain and tingling in my legs and feet. I end up asking my aides or family to check if my catheter is kinked, if my clothes are wrinkled, if Id had an episode of incontinence, or any other visible problem, and we almost always come up short.

I do periodically weight shift while I'm in my chair, and have only ever had two bedsores (one was on my elbow). Most of the time there's just no real rhyme or reason for why I start feeling symptomatic. The chest pressure gets really bad though. It feels like someone is filling me up with air and squeezing my sides all at the same time. I also start to get lethargic and feverish after about four hours of sitting. I've had various tests done to rule out serious heart or lung issues: blood works up, X-ray, CAT scan, sonogram & EKG. All of them came back fine. I take Prilosec OTC and have ruled out indigestion for the most part, because there's no obvious connection to meal times. I had a OBGYN exam to rule out anything on that end, nothing. Although, I have noticed a change in my cycle this last year, in the sense that around that week I feel worse than usual. During that week I'm usually achier, more tired and have more frequent fevers. All in all, it's been a vicious cycle, that has kept be bed bound most of the time. For whatever reason, the symptoms do subside a bit more when I'm lying down (not completely though). Knowing I'm going to feel uncomfortable makes me not want to bother getting up, which in turn lessens my tolerance for sitting up. It's a lose-lose situation. I'm just so tired of feeling nauseous, feverish, achy, and down right icky, 75% of the time. It's kind of like having the flu five days a week. It makes it very hard to be happy, or motivated, when you have the chills and feel discomfort.

I'm at my wits end. On one hand, I want to get up and be more productive. I end up feeling guilty and worthless for being in bed all the time. On the other hand, I legitimately feel sick, and lack the drive to do stuff and risk feeling worse. On BP days for example, I'm wiped by the time the nurse is gone, I'm showered and have eaten breakfast. Just sitting on the commode for three hours is taxing on my body, not to mention the constant stimulation the nurses have to do, to make me go to the bathroom. The whole process is both mentally and physically traumatic for me. It has also created hemorrhoids (how wonderful) that are directly irritated further by the entire process. I never had them before my accident, but I hear they are extremely painful. Although I can't feel the pain directly, it could be one of the contributing factors to my mystery symptoms and discomfort.

I end up chalking up a lot of my discomfort to autonomic dysreflexia, which is something many people with paralysis have to deal with. AD is the body's way of compensating for the fact that Ican't feel It is like nature's way of giving me a warning system. When there's something wrong, like my catheter being pulled, or an ingrown toenail, my body responds by elevating my blood pressure. The alleviation in blood pressure presents itself in different ways: chills, profuse sweating, muscle spams and throbbing headaches. If I start to feel symptomatic, I usually assume it's AD related and try to find the cause. If we do find a reason and fix the problem (such as repositioning me, or flushing the catheter) the symptoms subside almost immediately. Unfortunately, most of the time we don't find an obvious reason. So although I know my depression is a contributing factor to me being unmotivated and dissatisfied with my life, my reasons are not all in my head. My physical condition (aka-paralyzed) is the number one contributing factor to my depression, and my overall health and comfort has made it even harder to remain upbeat. Able bodied or not, no one likes being sick.

Having no real diagnosis or treatment for the chronic pressure, fevers (always low grade and always in the evening) and cold sweats makes me very frustrated and adds to my sense of hopelessness. As it is, I take over a dozen pills every day, and have the BP & catheter to contend with, all of which I absolutely hate. All of which, is unfortunately necessary to keep me alive, and relatively comfortable and healthy. The only problem is, it's obviously not working- at least not well enough. It's especially aggravating that I seem to be forever adding more pills and seeing few results. I take three different medication to help with depression, anxiety and insomnia (Pristiq, Remeron & Xanax). I take four different medications for my bowel & bladder related issues (Senekot, Colace, Detrol & Ditripan), on top of watching my diet. I watch my calorie intake and make sure to eat lots of fruits and/or veggies. Then there's the Prilosec, which is supposed to help with stomach issues and a multi-vitamin. It's bad enough being paralyzed, but feeling gross on top of that, just makes me want to curl up and sleep forever. It's like having a chronic illness, on top of a chronic condition. There's no cure in sight for my paralysis, and there's seemingly nothing to make me feel better. I wonder how many people with spinal cord injuries deal with similar problems. It's hard feeling like no one understands you and even harder feeling like there are no answers. I'm just stuck dealing with it; just like all the emotional pain.

Like I said, I've been feeling very down and tired of struggling so hard to cope with my situation, only to feel empty and sad. It's hard fighting for a life you hate living. That's why I started to seriously consider what it would mean to stop fighting. I mean, in terms of the physical and medical repercussions. It's not to say that I have already decided to stop trying. I'm literally just searching for answers. During these last five and a half years, few people have had any concrete answers to give me. There's no recipe for how to cope with having your life turned upside down over night, or how to deal with finding yourself complete stripped of yur independence. Everyone's situation and injury is different. The emotional scars and finding reasons to move forward have to be dealt with on your own terms. No one can say or do anything to make the emotional aspect of dealing with paralysis easier.

It's just infuriatingly frustrating when there's not any answers for the physical stuff. I get so angry sometimes. It seems so unfair that medical science has no cure; that they patched me up and sentenced me to live the life I have. It seems absurd and cruel to me at times, that my loved ones, doctors and nurses expect me to be happy, being paralyzed. It is not a high quality of life, no matter how you slice it; not to me. I feel I have the right to know all the options available to me, because at the end of the day, I'm the one living my life. I'm the one suffering, both physically and mentally. I'm the one that has to endure bowel programs, chronic aches, lack of privacy, cope with all of my memories and all of the loss. I never get a break from it. I never have the luxury of not thinking about it. I'm stuck, in every sense of the word.

I want to know what to expect if I were to say, enough is enough. What would happen if I stop having a bowel regime? What would that do, to a person in my condition? My doctor didn't really have an answer to that question. So I'm left wondering, who would have the answers? I'm not even sure who to ask, for some of my questions. That's why I've opened the subject up to general discussion. I figure there might be people out there who went through something similar with loved ones, or doctors, or nurses that have experience, working with people with paralysis and palliative care. My doctor thought I would qualify for hospice, if I decided to refuse nutrition, hydration and my treatments. He didn't know for sure. I'm wondering who would know. It's not as if I'm taking this matter lightly, and just saying I'm too sad, so I'm going to stop eating. I'm just curious to know exactly what my rights are and what to expect, from a medical perspective, if I chose not to sustain my life; if I decided to refuse help. In a way, I feel like everyone is tip-toeing around the answers, even if they know them, out of fear. It's as if people think the moment I have a few answers I'm going to die that very day. That's not the case. Surely, the thought of starving myself to death does not sound pleasant, and I'm in no rush to find out what it's like. I have looked into it though, as it is one of my only means of escape.

I've read up on the right to refuse nutrition and hydration. There is information based on eye witness accounts. For example, I read it's best not to intake any water at all, because it only prolongs the suffering. I read instead, you should just use a sponge to moisten the lips, to help alleviate the dryness, due to thirst and dehydration. I want answers, because if I really felt as though I absolutely had no will left to fight, I'd want to make my last days the most comfortable as possible. Refusing bowel program and what ever else, I'd decide to stop, would be careful decisions that I want to make based thinking things through and only ever as an absolute last resort.

I realize this might all seem morbid, and/or suicidal to the average healthy individual. The truth of the matter is, I have very little control over anything in my life and I've been hell and back. I know exactly what it's like to be on the brink of death. I've experienced being dependent on machines for life support. My life span is not that of the average person. I am not healthy. I know what it's like to feel like a burden and to have put family in the position to have to make life and death decisions for me. Therefore, I feel as though I both have to and want consider ALL of my options. I've already had to put my wishes down in writing, in my advanced directive, in case I'm unable to communicate my wants. I'm just at a place right now, where I want to know all my options, even if I decide to exercise while I still can communicate them. I mean, my living well basically already states everything I'm asking. I'm just wondering what I'd go through, and/or experience physically, based on medical experience and advice.

- Posted using BlogPress from my iPad

Questioning Life & My Options

2011-03-04T21:08:00.002-05:00

I've come to a point in my life where I find myself at a crossroad. I’ve been struggling the last five and a half years living with paralysis. It’s impossible to truly express the emotional rollercoaster ride that I’ve been on, since June 2005. I’ve tried my best to be open, about my thoughts and feelings. I’ve tried very hard to convey the magnitude of loss that I sustained, due to my injury, as well as the hardships of living with paralysis on a daily basis. Despite my best efforts, I feel like the average person can never understand how much I’ve suffered and continue to suffer. Words alone, aren’t enough to garnish empathy; sympathy perhaps. Even the people closest to me, that witness all that I have to endure, can never know what it’s like to live in my shoes. Although I often seek advice from other people living with paralysis, the pool of people that have/are lived/living through what I have/am, is very small. There aren’t many women in their early thirties with high level, complete spinal cord injuries. Even those that are out there, everyone’s life before their injury and at the point of injury differ. It’s near impossible to find other women that were injured in their mid twenties, that also lost careers, relationships, and everything else in between. While I appreciate the input and advice I’ve been given by injured men, I feel a huge disconnect and feel very isolated and lonely. The few women I have met, that I do consider able to understand me, are mostly all struggling just as much as I am, to cope with the insane amount of loss and change that our injuries have left us with.

Paralysis is so unique a state of being, that many times the things I experience (sensations, or lack thereof) have no comparison to when I was on my feet. Unless you’ve lived through it, you have no idea what it’s like. Anything you imagine is pale in comparison to what it’s like to live with it. There is no way to simulate the lack of feeling, on such as scale as a high level spinal cord injury. I’m not just paralyzed, I’m imprisoned. I’m cut off from 85% of my body. I can only feel my head, neck, shoulders, some of my outer arm (only up to & not including the elbow) and half of my breasts (top half). It’s as if the rest of me no longer exists in certain respects, like outside touch, or stimulation. Unfortunately, I do feel phantom pains, pressure and discomfort, that has no real rhyme or reason, and usually has no medical diagnosis, or solution. There is no way to fully grasp how it feels to lose all sense of independence and dignity overnight. My spinal cord injury stole my ability to be self sufficient in a matter of seconds, and I’ve been wrestling with how to cope with the void left behind, for almost six years. My injury has left me feeling constantly vulnerable, anxious, depressed, full of regret, lost, deprived and scared. While I’ve tried my best to remain positive, despite the bleak reality that a cure is most likely never going to be a reality for me, I feel justified in feeling the way that I do. I’ve made proactive steps ever since day one, to stay as positive and as mentally strong as possible, so that I could somehow keep moving forward, against my inner dissatisfaction of my life and the compromises I’m forced into making every day. I’ve sought counseling, gone to therapy, take an ever growing number of pills (anti-depressants, sleep aides and anti-anxiety meds), share with my peers, write, paint, pray meditate, distraction, etc. and feel like I’m running on vapors and running out of options. I’ve been pushing forward more so for my loved ones, than for myself, and find it increasingly harder to find reason, and/or motivation to essentially keep torturing myself.

It’s maddeningly frustrating to feel like I constantly have to justify for why I feel so down. I get so angry inside and just want to scream sometimes, “are you blind?!” to those people who expect me to accept all that I’ve lost and just to keep moving on with a smile on my face. Most of the time I assume it’s ignorance that makes people have unrealistic expectations. Reality is, most people don’t have a clue what it’s like to be forced into (out of lack of choice) accepting help: to need another adult to bathe, feed, and dress you, to have no control over bodily functions, to need a bowel regime and catheter, to need another person’s help with intimate hygiene tasks, like mouth care, shaving and menstruation, to need help for the smallest and otherwise seemingly insignificant tasks like scratching and itch, or fixing a wrinkle in your clothing, almost total lack of privacy, to be devoid of sensations and cut off from almost all physical intimacy and near total deprivation of sexual pleasure. Is it right for people to expect me (and people in my similar situation) to keep living this way, knowing full well that no one would ever knowingly choose to live this way? I mean, when someone is newly injured there’s always the hope of a cure. Once an individual is medically stable, they’re pretty much stuck living with paralysis. Once reality really hits, and/or hope for a cure fades away, what choices are we left with? Do I really have a choice but to cope the best as I can? Is it right to impose such a harsh quality of life onto someone? At times, I wish I wouldn’t have had that initial hope; that I would’ve given up when death would’ve come easily. Instead, I fought (and continue) to live a compromised version of my old life. It just never seems to get any easier. In fact, coping has gotten progressively harder, and my hope for my old life has faded away. I’m nearly always sad and feel trapped, with few options.

Since my injury, I’ve thought long and hard about quality of life, and about death. I’ve had to. I’ve put my wishes down in my living will, and often wish I would’ve seriously considered what I deemed as quality, before my accident. If I had the living will I have now, at the time of my accident, I would’ve spared myself the last five and a half years of pain. After the trauma and sheer terror of my first year, post accident, I know for certain that I never want to live reliant on machines. I feel it’s bad enough to be completely reliant on people and medication, let alone needing a ventilator, or treatment like dialysis. I’ve been on a ventilator, completely paralyzed. It was a hell on earth that I never want to relive. As scary as death seems to me, it offers the hope of eternal life, or at the very least, an escape from the chronic sickness and emotional pain that I feel every day. Although, I have mixed feelings of sadness for my loved ones and fear, for myself, I find myself contemplating my own mortality on a daily basis. What options do I have? It’s not so easy as just saying, “I give up.” If that were the case, I’m sure many people that are living with paralysis would not be here. At this point, my future seems bleak and it’s hard to be in the dark state that I’m currently in.

There are like I said earlier, people out there that do have a better understanding of my situation, and are somehow able to surpass all of obstacles of paralysis and find happiness. So then I begin to wonder if I’m just weak, for not being able to find joy, and for being so unhappy. Of the people that I know that are living with paralysis, I can’t help but wonder how it is that some of them have continued to try moving forward for decades. I don’t want to live into my forties, if it means I’m still living in a chair. However, I find “giving up” takes perhaps more courage than just scraping by. What are my realist options? I have the right to refuse nutrition, hydration, medications and treatments. What does that really mean? I feel like a lot of my initial strength to fight to live, came out of ignorance and denial of what my life would be like. I’m at a point where I feel like I’m on the verge of going crazy, and I don’t want to choose to die out of ignorance either. The process I’d have to endure, in order to die, might be so unbearable that I might be tempted into backing out, and fight to live again. It’s a horribly sad thought that I’ve thought about many times. Understandably, most people don’t want to contemplate death, or indulge my suicidal tendencies, by giving me straight answers. Then again, up until recently, I was not seeking out specific answers.

I feel as though I’m battling myself, in finding reasons to keep moving forward. In the late hours of the night, I think about my life and the choices I’ve made. I beat myself up over regrets and find myself pleading and begging God to be merciful. Every night, for a long while, I’ve asked God (if he/she exists) to either cure me, or take me. Obviously, I’ve yet to get a response. I can’t help but wrestle with myself over morals and ethics. I wonder if giving up on relying on others is the same as taking my own life. The superstitious (or perhaps faith) part of me wants to know if God would consider refusal of help suicide, and what that would mean for my soul (if I have one). No one can give me concrete answers to those questions. All I know is that it is illegal for my loved ones, or medical professionals to assist me. Therefore, I can’t ask for an injection, or a handful of pills (a quick, peaceful death), without putting that person at criminal liability and/or horrible guilt. I know that if it were legal here (like in Switzerland) I could find it in myself to ask for help, but since it isn’t, I can’t and don’t expect anyone to ruin their own life, for the sake of ending mine. Therefore, my only real options are to refuse the treatments, medication and/or food and water that are keeping me alive. I am curious to know the medical repercussions of such a decision would be and what I’d have to endure, if I chose to exercise my rights. What kind of death would it be, to starve myself of food and water? How long would it take? What would happen if I refused to continue my bowel regime and/or stopped taking my medication? Would those decisions cause a lot of physical pain? Would I qualify for palliative care, like hospice? Would I be entitled to morphine, or something similar, to ease the pain and stress of hunger, impaction, and/or whatever discomforts that refusing those things would bring? What means would be the quickest, least painful way? I did ask my doctor some of these questions, but only got vague responses. I think that’s mostly because he wants me to keep on living, but also out of lack of knowledge. So I’m left wondering if I can find the answers, and if so where? Although part of me feels like a failure, or weak for considering death, I feel like I have the right to know the answers to these questions.

I hesitated to even post this, as I'm sure there are many that might not agree with, or condone this type of dialogue, or conversation. I also know that this blog will cause my loved ones pain. In fact, I posted this on the CareCure forums first (about a week ago), in hopes of connecting with other people with SCIs, and giving myself a chance to gather some feedback from people in similar situations. I stirred up a decent response, and have been continuing to reply to the ideas, and comments that people have shared with me.

I’m just looking for answers. I don’t expect anyone to advocate the thought of giving up on life. I understand that there are many people that are fine with their lives, and living with paralysis. I also expect that most anyone who reads this will probably try and dissuade me from taking drastic measures and offer me I pep talk. I’m not even saying that I am giving up. I just want to know what my options are, at this point in my life. I realize that I’m at a very low point; that’s precisely why I’m seeking help. I don’t want to feel miserable, but I am.

- Posted using BlogPress from my iPad

Haiku: Wish To Be Set Free

2011-02-10T18:49:00.001-05:00

Prisoner within
Trapped inside my own body
Longing to escape

Deprived of feeling
Yearning for lost sensations
Overwhelming loss

Haunting memories
Wishing for my freedom back
Wanting to forget

Praying for a cure
Accepting reality
Confronting my fears

Robbed of privacy
Feeling like I'm a burden
Stolen dignity

Envious of all
Dreaming of the life I had
Plagued by jealousy

Stranger in my skin
Life will never be the same
Wish to be set free