Sunday, December 18, 2011

Quality Vs. Quantity

(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.

Monday, December 12, 2011

Lost Love

(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.

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."

Sunday, December 11, 2011

Message to My Friends

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

Tuesday, September 13, 2011

Blog Hiatus

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 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

Monday, September 12, 2011

"Schwartz Center Rounds Annual Dinner"

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

Tuesday, July 26, 2011

Sketchbook Is Finally Digitized & Online!

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 (

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

Sunday, July 17, 2011

Control Freak, With No Control

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