tag:blogger.com,1999:blog-90733070227305959402024-03-05T08:03:00.135-05:00Life; ParalyzedMy thoughts & day to day struggles, living with paralysis. Current information related to spinal cord injuries and paralysis. Visit my website for more information: christinasymanski.com.Chrissyhttp://www.blogger.com/profile/00069146517819619339noreply@blogger.comBlogger80125tag:blogger.com,1999:blog-9073307022730595940.post-46960727819762867332012-03-02T13:51:00.000-05:002012-03-02T13:51:05.265-05:00More book news!Thanks to Jimmy, Christina's book is now available on the <a href="http://www.amazon.com/Life-Paralyzed-ebook/dp/B007FVLTGG/ref=sr_1_2?s=digital-text&ie=UTF8&qid=1330694833&sr=1-2">Kindle</a>!<br />
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Just like the Nook, Kindle offers a free app on all Apple devices, so you can download the book on your iPhone, iPad, or iPod.<br />
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Also, please remember to post a review of the book on Amazon, B&N, Lulu, your own blog, here as a comment, wherever! <br />
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Thanks,<br />
ErinChrissyhttp://www.blogger.com/profile/00069146517819619339noreply@blogger.com6tag:blogger.com,1999:blog-9073307022730595940.post-85804603052396673022012-02-28T18:42:00.001-05:002012-02-29T19:33:16.980-05:00Life;Paralyzed Book UpdateHi everyone,<br />
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Christina's book is now available for purchase from Barnes & Noble as a <a href="http://www.barnesandnoble.com/w/life-paralyzed-christina-symanski/1109132497?ean=9781105517464&itm=1&usri=life+paralyzed" target="_blank">Nook e-book</a>. It has also been approved for the iBookstore, but has not yet been added to the catalog. This process can apparently take quite some time (possibly months), but it is being worked on and we'll post an update as soon as we have more information.<br />
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If you've read her book and liked it, please consider posting a review either on the <a href="http://www.barnesandnoble.com/w/life-paralyzed-christina-symanski/1109132497?ean=9781105517464&itm=1&usri=life+paralyzed" target="_blank">B&N page</a>, <a href="http://www.lulu.com/product/ebook/life-paralyzed/18887531" target="_blank">Lulu.com</a>, or as a comment here. Please also spread the word and tell others about her book as one of Christina's biggest goals was to raise awareness about both spinal cord injuries and right-to-die issues.<br />
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Edited to add: If you have an Apple device (iPod, iPad, etc.) you can download a FREE Nook app which will allow you to read the book as a Nook e-book. <br />
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Thank you!<br />
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ErinChrissyhttp://www.blogger.com/profile/00069146517819619339noreply@blogger.com0tag:blogger.com,1999:blog-9073307022730595940.post-82739948815472117882012-02-16T16:02:00.000-05:002012-02-16T16:02:32.499-05:00A message from Christina's sisterSince a recent article was published there has been a lot of press covering Christina's death. In the process some articles have spun the information into something that it's not. My sister's death was NOT about her love life. Yes, she loved Jimmy. Yes, it was sad that she and him could not be together the way they wanted. However, her reasons for doing what she did were based off the pain and suffering she endured daily. Despite our family, her friends, and her amazing in home care staff trying to persuade her against her decision, she chose what she did. As her loved ones we chose to respect her decision, and support her the best we could in a very horrible situation. Christina got cleared by her therapist, her physician, and lawyer to carry out this decision. She was found to be of sound mind, and legally allowed to refuse treatment (through Living Will and DNR). As a family, we could do nothing, but support her. None of us wanted this for her. We all (family, friends and aides) tried our best to get her to enjoy life after her injury. However, she struggled with guilt over causing her injury, and the physical symptoms she dealt with as a result. This, is why she chose what she did.<br />
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Yes, there were mistakes on some of her distant family, STEP-Mother and Father's part that lead to a very rough recovery at first. This however does not shed the right light on the family as a whole. Her Mother and sisters (Kati, and I) tried our best to support her. Her father later mended his issues and supporter her the best he could. He visited her as much as possible. While Christina was in the nursing home I, Killeen, helped her setup accounts to help her able to move out of there and into her apartment. I also setup a trust fund to get her access to a van, that she eventually was able to buy thanks to donations made by family and friends. My mother and sister (Kati) moved in with Christina once her room mate at the time (her friend Steve) was moving out. We all who loved her TRIED our best to get her help for both physical and mental health. She was on medication for depression and anxiety for years. Please, do not think that the family, and Christina did not try our best to improve the quality of life. Yes, things were not perfect, but her love life was not the cause of her decision. Her family and friends were not the cause of her decision. She made it, and now we all have to deal with the grief, and side effects that come from that.<br />
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Please, disregard this article:<br />
<a href="http://www.dailymail.co.uk/news/article-2101334/Christina-Symanski-24-starved-death-paralysed-boyfriend-on.html">http://www.dailymail.co.uk/news/article-2101334/Christina-Symanski-24-starved-death-paralysed-boyfriend-on.html</a><br />
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Thank you,<br />
Killeen Snyder (sister to Christina Symanski)Chrissyhttp://www.blogger.com/profile/00069146517819619339noreply@blogger.com25tag:blogger.com,1999:blog-9073307022730595940.post-36744720350306030532012-02-15T20:21:00.001-05:002012-02-16T08:32:18.406-05:00Life; Paralyzed - The BookAs Christina has mentioned on her blog before, she wrote an autobiography which was finished shortly before she passed. She left the task of getting it edited and published to a small group of friends, and I am proud to announce that her book is now officially available for download from Lulu.com!<br />
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It is still in the process of being approved as an e-book for BN.com and iBooks, which would enable you to read it on your Nook, iPad, etc. If you purchase it directly from Lulu's site, you will have to read it on your computer (you might need to download a free Adobe program as well). We were going to wait to announce the publication until it was available everywhere (which could take several more weeks), but her story seems to be getting quite a bit of publicity lately and we want people to be able to read the entire story from her perspective, as she wrote it.<br />
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If you're interested in purchasing the book now, you can do so <a href="http://www.lulu.com/product/ebook/life-paralyzed/18887531?productTrackingContext=search_results/search_shelf/center/1%20" target="_blank">here</a>. If you would rather wait until it's available for your e-reader, please check back for updates!Chrissyhttp://www.blogger.com/profile/00069146517819619339noreply@blogger.com8tag:blogger.com,1999:blog-9073307022730595940.post-68985579787344809912011-12-18T21:26:00.000-05:002011-12-18T21:26:06.379-05:00Quality Vs. Quantity(Christina originally wrote this post on April 19, 2011)<br />
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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. <br />
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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. <br />
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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."<br />
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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. <br />
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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. <br />
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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.<br />
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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. <br />
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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. <br />
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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.<br />
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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. <br />
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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. <br />
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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.<br />
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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. <br />
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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). <br />
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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). <br />
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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. <br />
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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. <br />
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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.Chrissyhttp://www.blogger.com/profile/00069146517819619339noreply@blogger.com10tag:blogger.com,1999:blog-9073307022730595940.post-53945211453374225742011-12-12T22:16:00.001-05:002011-12-12T23:42:53.739-05:00Lost Love(Christina originally wrote this post on May 1, 2011)<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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!<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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).<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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."<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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).<br />
<br />
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.<br />
<br />
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.<br />
------------------<br />
<br />
Here's what I wrote, in my journal, after our visit:<br />
<br />
"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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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."<br />
<br />
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</div>Chrissyhttp://www.blogger.com/profile/00069146517819619339noreply@blogger.com12tag:blogger.com,1999:blog-9073307022730595940.post-11050441921186849712011-12-11T17:05:00.001-05:002011-12-11T17:05:42.217-05:00Message to My FriendsI'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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
Again, thank you all for your love, support & friendship.<br />
Love always, ChristinaChrissyhttp://www.blogger.com/profile/00069146517819619339noreply@blogger.com29tag:blogger.com,1999:blog-9073307022730595940.post-81835119028420404342011-09-13T01:01:00.002-04:002011-09-13T01:05:00.788-04:00Blog HiatusI'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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
<br />
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. <br />
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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.<br />
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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. <br />
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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. <br />
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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.<br />
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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.<br />
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Right now I've been working with a couple of editors and trying to determine how much it will cost to get the book professionally edited. I've gotten some great feedback, but it's going to take a substantial (between $2,000-5,000) amount of money to get the job done right. I'm waiting to hear back from lawyer, to see if this is something I can use my trust for. We shall see. Honestly, I think it should be permissible, because it's definitely an expense that will go towards improving the quality of my life and hopefully that of many others. Once I get the editing logistics/fees ironed out and the book is edited and ready for publication, I plan to use lulu.com to covert the book into e-book (aka paperless) format. Once it's published it will be available to purchase through Apple's iBook app (on iPad), through Barnes and Noble's Nook and Nook Color and hopefully through Amazon's Kindle. <br />
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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. <br />
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- Posted using BlogPress from my iPadChrissyhttp://www.blogger.com/profile/00069146517819619339noreply@blogger.com9tag:blogger.com,1999:blog-9073307022730595940.post-67811225481946424082011-09-12T19:58:00.002-04:002011-09-12T20:01:39.584-04:00"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. <br />
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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. <br />
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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. <br />
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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. <br />
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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:<br />
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"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.).<br />
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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.<br />
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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.<br />
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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."<br />
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Good stuff :) I'm excited to hear the feedback!<br />
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- Posted using BlogPress from my iPadChrissyhttp://www.blogger.com/profile/00069146517819619339noreply@blogger.com2tag:blogger.com,1999:blog-9073307022730595940.post-39145970316952437512011-07-26T16:07:00.005-04:002011-08-17T12:41:57.936-04:00Sketchbook 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. <br />
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Since I do all my artwork by mouth, it was much easier for me to create the sketches/artwork for my sketchbook on my iPad & print them out. I created a description page and image for each two page layout. The book is now digitized and available for viewing through my Art House Co-op profile, or directly through this link (www.arthousecoop.com/library/4604). <br />
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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. <br />
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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<br />
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- Posted using BlogPress from my iPadChrissyhttp://www.blogger.com/profile/00069146517819619339noreply@blogger.com5tag:blogger.com,1999:blog-9073307022730595940.post-66062167814890260822011-07-17T00:42:00.003-04:002011-07-17T23:33:28.981-04:00Control Freak, With No ControlOne 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.<br />
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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. <br />
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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. <br />
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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. <br />
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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. <br />
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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. <br />
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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. <br />
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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. <br />
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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. <br />
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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. <br />
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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. <br />
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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. <br />
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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. <br />
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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. <br />
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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. <br />
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- Posted using BlogPress from my iPadChrissyhttp://www.blogger.com/profile/00069146517819619339noreply@blogger.com5tag:blogger.com,1999:blog-9073307022730595940.post-63476289420565440692011-07-11T22:14:00.002-04:002011-07-11T22:17:01.514-04:00Sleepless NightsI had a horrible weekend. As many of you know, I've been battling with insomnia nearly my whole life. My biggest problem has always been quieting my racing thoughts, especially when I'm stressed, or have something big to look forward to (good or bad). Noise has also always been an issue for me. I can't fall asleep to silence, because my mind will wander endlessly. White noise isn't distracting enough to quiet my thoughts. If something is too interesting, it'll grab my attention and compel me to keep listening. Even as a child, I needed something to distract me from my thoughts, just enough to lull me into sleep. In order for me to fall asleep, whatever I'm listening has to be familiar, without being catchy (like music, which I tend to sing in my mind). When I was young, I often listened to the same books on cassette, over and over again. Once I got a TV in my room, I developed the habit of falling asleep to the familiar sounds of my favorite movies (either VCR tape or DVD, set on sleep timer). <br />
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Once I've finally managed to fall asleep, the second problem I have is that I never seem to fall into a deep sleep. Even though I usually recall having several dreams each night (which are indicators of REM sleep), it's as if I'm always right on the verge of consciousness. From what I've read, the sleep cycle repeats after REM sleep. Since I know I have several dreams each night, that would suggest I am achieving deep sleep at some point. However, it hardly ever feels that way. The slightest noise will wake me up, and I often have to start the entire process of trying to fall asleep all over again. As an example of how light a sleeper I am, would be that (when I was still on my feet) I once woke up to the sound of water dripping onto my carpet. As soon as my alarm would ring in the morning, I'd shoot out of bed, wide awake. In fact, I used to get so annoyed, because my brother would often let his alarm ring and ring. Even through two closed doors, and a hallway apart, I'd end up charging into his room to wake him up, so I could attempt to fall back asleep.<br />
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Since my accident, my insomnia has only intensified. I'm forever trapped with my thoughts (often sad and/or unpleasant) and almost always stressed out over something. The first year and a half after my accident was the worst. I was definitely sleep deprived during that entire period. Between the stress, shock and trauma of all the sudden change and loss, and the constant interruptions and noise (aides coming to turn me every two hours, nurses coming in my room with medication, or to take blood, my roommate, the call bell and loud speaker) it was near impossible for me to sleep at all. Nights were terrifyingly lonely, and it is when I felt most vulnerable and trapped within my situation. I had few pleasant distractions, and much too much outside interference. Although the nursing facilities I lived at tried giving me oral sleep aides, I was lucky if I got a couple of hours of broken sleep each night. Being sleep deprived for so long, definitely contributed to my overall health and mood. I had been so tired, for so long, it really felt as though I was being tortured. By the time I finally got myself out of the nursing home, I felt as though I had been very close to having completely lost my sanity.<br />
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Since my accident, I probably slept the most soundly I ever have (within the past six years) during the first few months of living in my current apartment. I finally had peace and quiet. I only woke up out of discomfort (maybe a couple times each night) and could usually fall back asleep rather quickly, after my roommate would help me. My roommate (at the time) worked full time, and went to bed around ten o'clock or eleven. Thankfully, he was a pretty heavy sleeper and although it might've taken me a couple of rings (I had a call bell system hooked up between our two rooms-which are at separate ends of my apartment), he was able to fall back asleep immediately. In fact, he got so used to our routine, I'd almost swear he was sometimes sleepwalking. He'd come in my room, and without a word between us, he'd straighten out my legs (which move involuntarily, due to spasms), reposition my arms, fix my hair (which often gets on my face and is annoying) and give me a drink. <br />
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I think I slept so well those first few months, because of the lack of unwanted noise (I still have to listen to CDs or DVDs) and the fact that I was the happiest I had been, in a very long time. I had just achieved a huge feat, by freeing myself from the nursing facility and was feeling relatively healthy. Getting out of the nursing home felt like a high. It was the first big, positive achievement I had made, since my injury. I was also much more active during the day, in comparison to my life now. During that time I felt well enough to get up in my chair, for eight or more hours each day. I spent all day distracted, painting, reading and playing games on my computer. I also had more responsibility, making sure the groceries got bought, telling my aides what meals to prepare and sorting through my mail (my mom & sister have since taken over those tasks- which I don't mind). <br />
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Ever since getting a bedsore on my upper thigh, back in 2008 my health and stamina have been declining. I ended up needing to be bed bound for a few months, while the wound vacuum was attached to me. I tried to slowly rebuild my stamina, by getting up for only a few hours each day. However, I've never quite been the same as before the sore. Sometime during 2009 I started getting this mysterious chest pain (which I have still yet to find a definitive cause for, or solution to), which seemingly subsided a bit once I returned to bed. I also developed hemorrhoids around that same period, which I've often thought could account for why the chest pains seemingly bothered me more intensely and more frequently while being seated. While I'm sure my hemorrhoids play their part in my snowballing failing health, and definitely have made bowel program more unpleasant for me, they don't always correlate to the chest pain. There have been countless occasions where the chest pressure begins while I'm lying in bed, and persists for hours.<br />
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My bowel program has really started taking a lot out of me these past couple of years. During BP I definitely experience autonomic dysreflexia, and afterwards often feel lethargic, and achy for hours. For at least the last year and a half, to two years, I've been staying in bed all day after BP. Now the chest pains seem completely random, and although some of my AD symptoms lessen when I'm lying flat, the chest pressure flares up regardless of whether I've been sitting up all day or not. Getting up (other than for BP & shower) every other day has had a double edged sword effect on my overall health and stamina. My body just isn't used to getting up every day. When I do, I seem to tire much more quickly than I used to. <br />
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Ironically, even though I often feel lousy and more fatigued than I used to I actually have MORE trouble sleeping now, than in the recent past. One of the leading (and most annoying) reasons is that it has become increasingly more difficult to be comfortable, even despite the fact I'm laying down. I'm often uncomfortable, due to low grade fevers, the mystery chest pain, and on and off chills, or cold sweats. I deal with two out of those four symptoms every night. Even though I might be super tired, if I'm not comfortable I can't sleep. I end up asking my aides, mom, and sister to check my catheter, reposition me, fix my hair, give me a drink, take my temperature and scratch itches (on my face) at least a dozen times each night before I finally doze off. Some nights I listen to the entire length of my CD (I enjoy listening to the Harry Potter series) and have to ask my sister to restart it, before I fall asleep for the first time. Staying in bed has decreased my stamina for sitting, but when I do sit I'm often uncomfortable and want to lay down. It's become a lose-lose situation.<br />
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Over the past two years, I started taking sleep aides (again) in a desperate attempt to help take the edge off and help me fall asleep, despite any physical discomfort I might feel. I've tried Meletonin, Ambien, Tylenol-PM, anti-histamines, Remeron, and Xanax. I'm still taking the Remeron (which is an anti-depressant my doctor prescribed for it's drowsy side effect- one of the pills I first tried in the nursing home) at its highest dose (45mg) at bedtime. My doctor also added Xanax at bedtime, in hopes of helping to calm my mind (it's an anti-anxiety drug). Honestly, nothing has seemed to actually "knock me out" in the way I wish they would have. <br />
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Lately (within the last six months or so) my stress levels have been through the roof. I'm really at my wits end with my entire lifestyle. I've been seriously considering refusing treatment, and putting an end to my suffering. I've done a ton of research, investigating my options and have taken measures to protect my rights, and ultimate wishes. It has not been an easy to think about my death, and the effects my demise will likely have on my loved ones. As difficult it has been to share my thoughts with my family and friends, I have felt it necessary to be open and honest. Needless to say, I've had many sleepless nights; thinking about what I will have to endure in order to die, how my decisions will effect the people I love and constantly weighing the pros and cons of my day to to day life, against my guilty feelings of not wanting to hurt the people I will ultimately leave behind. My mind is forever jammed pack, full of difficult choices and harsh realities. <br />
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Despite having peace and quiet, the comfort of having my family and pets with me, my failing health and exhaustion with my situation has got me more stressed out than ever. I feel as stressed out now, as when I was newly injured. I'm just so fed up with feeling sick so often, and finding little, to no relief (even though I've put myself through a dozen different medical tests, and sought out various forms of help- spiritual, mental & medical) from anything I've tried. The reality is there aren't many options available to me to make my situation any better, or more tolerable. I've BEEN trying my hardest for six years. I'm just tired, in every sense of the word. <br />
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I realize that getting inadequate sleep can (and most likely is) feed into my feelings of being physically ill. I know that it is a vicious cycle. I'm desperate, to find something that will work better than what I've been taking. I'm back to where it is taking me hours to fall asleep, and I wake up several times each night. Each time I wake up, it can take up to an hour before I fall back asleep. Nights before BP are ALWAYS more restless. Some mornings I actually dose off for a minute or two on the toilet, because of how tired I am. When I get done with BP I often have to fight myself not to take a nap, because I'm afraid it will be harder to sleep that night. I end up napping half the time. It's an awful cycle. <br />
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Knowing that I was about to reach the maximum dose of Xanax (which is 4mg- I was taking 3mg), I decided to ask my doctor if I could have something stronger. I had asked for Valium; instead he prescribed Ativan. I didn't question his decision. I figured, as long as it's stronger and might have a better chance of "knocking me out" for a few hours (at least), it was worth trying. My doctor only started me on 1mg of the Ativan. I was doubtful it'd do anything (since I seem to have a high tolerance to medication), but took it anyway to give it a chance. The first dose I took was on Friday night (7/8). Instead of passing out, I felt wired all night and barely slept. Even though I felt tired the next morning, and a bit nauseous I forced myself to get up in my chair. Saturday night I took the second dose. Again, I didn't sleep all night (but I attributed it to the fact that a new nurse was scheduled to come in the morning). As soon as the nurse and my aide laid me down in bed after BP, my whole room started spinning. <br />
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I could barely tolerate them having to turn me back and forth to dress me. Waves of nausea came over me. I couldn't stand to lie flat, for fear of throwing up. I asked to be put on my left side, in the fetal position. I managed to keep down a bit of toast and some juice, and stayed on my side for several hours (until the pain in my shoulder became too intense). My mom went to the pharmacy and bought me something for the nausea (Emetrol-it's a gross cherry flavored syrup). I took some, but it probably wasn't as effective as it could've been since I insisted on chasing it with a bit of juice. I ended up sitting up in bed for a few more hours before the nausea started to really calm. At times, it was so bad I was in tears. If there's one thing I hate more than BP, it's nausea.<br />
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In the end, I managed to keep down some chicken noodle soup, some toast with peanut butter, ginger ale and another dose of Emetrol, before feeling near normal. I figured it wasn't coincidence that I had just started the Ativan, and began feeling so ill. I wrote to my doctor, letting him know about my hellish weekend and informed him I was going to discontinue taking the Ativan. He agreed, and told me I could switch back to the Xanax, and that I could up the dose to the maximum 4mg. That's what I did last night and thankfully, I think my hunch was right. Not only did I sleep well last night, but no more nausea today. A small victory.<br />
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I'm wondering how long the Xanax will keep helping, as I've obviously already built up a tolerances to lower doses. The whole ordeal has got me nervous to try anything different for a while. I'm praying the Xanax keeps working for at least a couple more months. I'm tired of being sick and tired of being tired. <br />
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- Posted using BlogPress from my iPadChrissyhttp://www.blogger.com/profile/00069146517819619339noreply@blogger.com2tag:blogger.com,1999:blog-9073307022730595940.post-82433344513339365782011-07-04T22:44:00.007-04:002011-07-05T18:47:07.216-04:00Love StinksSo, today is my thirty-first birthday. I'm feeling more run down, old, and exhausted than ever. I realize thirty-one is nothing, in terms of the average lifespan; but my life is anything from but average. I always thought by now, I'd be married with children. Before my accident, I was living on my own as a teacher, and had met the love of my life. He made me happier than anyone else I'd ever been with, and I truly believe we would still been together, if my accident never happened.<br />
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It's days like these that make me reflect on my life, my mistakes and my regrets, more so than ever. My birthday has become a day a dread, because I know the emotional mess it makes me. Every year I spend paralyzed is another year wasted, and so many wonderful missed opportunities. I had a terrific life, before my accident and experienced a lot in the first (almost) twenty-five years of my life. I know exactly what I'm missing out on, and how much better life could be. You can't miss what you never had, but I had nearly everything I'd ever wanted. Now, I feel stuck as a spectator to life, and watch everyone else around me enjoying the things I want most desperately, but can't have because of my injury.<br />
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Every birthday is a bittersweet reminder of what I don't have, and wish I did. Every year I watch more and more and more friends get married, and have babies. Very few people understand what my day to day life is like, and how very limited I am from doing things. It's easy to say "you can still do everything everyone else can, just in a different way." Those same people that say that, often don't consider all the work and effort that goes into doing the simplest of things. Everything I choose to do, requires the intervention of others. It gets tedious & annoying. Not to mention, there are just certain things I CAN'T do, no matter how you look at it. I can't have a normal sex life. I'm cut off from 90% of my body. Having someone else go through the motions of something I can't even feel, or enjoy seems frustrating & pointless to me. I can't experience a normal pregnancy, or care for a child. I can't even care for myself. Few people understand the isolation, and emptiness that I feel. <br />
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This past week, one of my ex-boyfriends (Mike) got married. Another just got engaged (Eric). It's not like I'm still IN love with either of them, but they will always hold special places in my heart. We were friends (and hung out from time to time, before my injury) and although I'm genuinely happy for both of them, I can't help but feel sorry for myself. It's been hard enough watching all the rest of my friends get married and start families, but it hit me really hard to know they are now both part of that list as well. Obviously, as ex-boyfriends & girlfriends we shared a special bond, beyond normal friendship. During our time together (with each of them) we had fantasized of a future together. It seems silly that it bothers me so much, but I think my situation has made me hypersensitive. If I were married and living a normal life, I probably wouldn't have given either situation a second thought. I would have been able to genuinely celebrate with them. However, that's not the case. In fact, I feel lonelier than ever...<br />
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I wasted a lot of time (almost six years) with someone (Joey), that I totally regret. I had lost touch with nearly all my friends during my time with Joey. He was very jealous, and controlling and I was foolish enough to put up with it. I left him the year before my accident. During that time I got back in touch with both Mike & Eric, since we shared mutual friends. It was great catching up on old times, and a being part of their lives again. They had each moved on and were dating other people, which was fine. It was just nice reminiscing and spending time with our mutual group of friends (two of my closest friends-that we all share-Christy & Moody). After the way I had cut ties with everyone, I had been thankful they were willing to let me be a part of their lives again.<br />
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Life moved on, and we all remained friends. Then I met the love of my life, Jimmy. We dated for five months before my accident. It was a whirlwind romance. Our time together was by far, the happiest of my life. When I got hurt, we had been only days away from moving in together. Instead, everything we had was violently ripped away. We tried our hardest to keep our relationship going, despite my accident, but it collapsed after six months of battling with an impossible situation. He had been forced to move back to PA. I had been stuck in a nursing home; completely crushed in every way. Although it killed us both, we decided to go our separate ways.<br />
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Over the past six years, I've never stopped loving him, or been able to get past what we had. My love for him, has kept me from being able to open my heart up to anyone else. For a long while (the first two years) we stayed out of contact with one another. During that time, I tried to force him to the back of my mind, to dull the pain. Then in 2008 we got back in touch, and tried to stay in contact as friends. We corresponded from time to time, and talked on the phone, and he came to visit me one time. All the while, he was in a serious relationship with someone else. Eventually, it just became too painful for me. No matter how hard I try, I just can't see him as a friend. Having him in my life, with her in the background, felt unfair to both of us. I decided it would be best if he let me go, and live his life without me.<br />
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It sucked, and I felt like I had lost him all over again. On the other hand, I had to face reality. He had moved on, and loved someone one else. I was only deluding myself into thinking there was any chance left, for a future for us. Being just friends was intolerable, and I've been through enough pain & loss, to not want to torture myself further. As much as losing Jimmy has hurt me, I've never held it against him, or thought less of him. I don't know if I'd be able to deal with being with him, if he were paralyzed. There's so much change & sacrifice that comes along with living with paralysis. I certainly don't want this life for myself, and feel selfish expecting him to give up a normal life, when he has a choice. <br />
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Long story short, Jimmy ended up breaking things off with his ex-girlfriend (not exactly sure why & am not going to presume it had anything to do with me). He contacted me, letting me know he was single and he has been back in my life for the past several months. He says he regrets leaving me, and that he does love me. Although that's music to my ears, he's not saying he's willing to try to be more than friends. It's all very confusing. On one hand he says he loves me, and wants to be a part of my life. On the other hand, he's not willing to make a commitment to me. For me, there's only two logical ways I can interpret his mixed messages. One could be, he genuinely loves me (as a friend), but is not IN love with me and wants the freedom to be able to sleep around and have a normal life, in that regard. The second possibility could be, he IS still in love with me, but is just scared. <br />
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He's said before that he wouldn't want to make any promises to me, unless he was certain he'd never want to leave again. My brain understands that, but my heart and body are exhausted. I feel as though I'm on the verge of "checking out" on this life and have absolutely NOTHING left to lose. If it were up to me, I'd want to give it my all, because I know my time is short anyway. I feel like I've been so hurt, and lost so much in these past six years, that I have nothing left to lose, and can't possibly be hurt more than I already have been. I'm trying my best to enjoy our time together, but it hurts knowing that there is a distance between us, that didn't used to exist. I feel his hesitation, but don't know the true reasons behind it.<br />
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What hurts the most, is feeling like I've never been good enough, for any man to want to be with me forever. I was with Joey for almost six years, with no ring to show for it. Mike was my first love, and although we talked about getting married, we were just naive kids. Eric never seemed sure of anything (and I'm so happy he finally found someone that makes him truly happy). Jimmy & I talked of marriage before the accident, and I do believe we'd be happily married- if I never got hurt. He even wanted to propose to me when I was clinging to life in I.C.U. and at Kessler. Looking back though, he was just just desperately grasping and scared of losing me. Neither of us understood how serious, or life changing my injury was at that point. <br />
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Here I am, thirty-one years old and feel completely isolated, devoid of affection and alone. I'm not talking about the love my family and friends give me. I'm referring to a mate, a companion, a second half, a soulmate. I'm missing that in my life, and feel very deprived not having that special someone. What sucks even worse, is that no matter how hard I try to not project my own feelings onto other people, I feel as though Jimmy should be that person; or at least I wish he was. Obviously I can't force him to feel, or do anything he doesn't want to. To push, or insist that he commit to me would defeat the point entirely. I want him to love me, for me, regardless. He either does, or he doesn't. <br />
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What really sucks, is that my whole life, friends, family and tons of men have told me how "special" and "beautiful" I am. I've heard those words a million times over. Everyone that has claimed to love me, at some point in my life has said, "You're an amazing person; beautiful, inside and out." Even since my accident, people have said those words to me. However, they all sound like hollow, meaningless words. If they were true, surely I could find someone to be with me. Then again, I know I'm so stuck on Jimmy, that I don't give anyone else a chance. However, he's one of the people in my life that is guilty of saying those exact words to me. At the end of the day though, words are just words. I often wonder if people just say things to make me feel good, or to give me hope, for my hopeless situation. It doesn't make me feel good to hear how "amazing" I am, unless those words are backed up with action. <br />
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I feel like no matter who I've ever wanted to be with, I've never been good enough for them. I'm supposedly this great, talented, amazing, beautiful person, but yet that's still not good enough to want to take a chance, or for anyone to have wanted to spend their life with me. I feel like with almost every relationship I've ever had, there's always been a "but" factor. "You're beautiful, but..." "You're terrific, but..." "You're my soulmate, but..." That hurts and really sucks. It makes all the pretty words, and thoughtful sentiments feel empty and false. I mean, if you truly believed someone was your "soul mate" wouldn't you at least try giving them a second chance? <br />
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- Posted using BlogPress from my iPadChrissyhttp://www.blogger.com/profile/00069146517819619339noreply@blogger.com3tag:blogger.com,1999:blog-9073307022730595940.post-52630539807047277652011-07-02T01:32:00.005-04:002011-07-20T22:46:34.893-04:00Yes. Another Butt Related Blog...Today I went to see the surgeon my physiatrist suggested to me, to get my hemorrhoids removed. Initially I was scheduled for the procedure on Wednesday, but they canceled and rescheduled for today. Three sleepless nights, a week of eating a semi- liquid, high fiber diet and I'm not hemorrhoid free. It took us (my mother & I) about an hour's drive to get to the doctor's office. We even brought my Hoyer lift along for the ride, in preparation for the visit. <br />
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The surgeon sat with me first in her office, for a consultation. I described my normal bowel regime, and told her about my daily bouts of autonomic dysreflexia, about my mystery chest pains, and about my (and my physiatrist & regular physician's) theory of how my hemorrhoids could be contributing to, and/or causing most of my symptoms. She agreed that it could very likely be the case, and said she would need to examine me. So me, my mom & an assistant followed her into an examination room. The three of them used my lift to get me onto the table, and rolled me on my side, for the doctor to examine me (I was smart and wore a skirt- for easy access). She poked around (literally) for a few moments and then said we could talk about options. <br />
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The exam itself, wasn't so bad. It was just the mild discomfort of pins, and needles and goosebumps, that I typically get with digital stimulation. Luckily, it didn't last more than a few seconds. She confirmed the presence of hemorrhoids, but said we should discuss pros and cons, before deciding on surgery. I had assumed (based on what my physiatrist had told me, and from my phone conversation with the receptionist) that I was going to have the surgery today, during my visit. The doctor explained that normally the surgery would take place in the hospital, and I'd need to schedule a separate appointment, if that's what I decided I wanted to do. <br />
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The assistant and my mom helped to put me back in my chair, and the doctor told me her assessment. She said that the hemorrhoids I have internally are normal, given my situation and the typical flaccidness present with my type of injury. She said that given the fact that I have to have a bowel regimen, and digital stimulation, that those internal hemorrhoids would be expected. She said since my colon wasn't prolapsed, and the external hemorrhoids I have are small "tissue flaps" she wouldn't recommend surgery. <br />
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She said that I had several options to try and combat the AD. First, she said the external hemorrhoids were minor and not typically painful (my mother & other people I've talked to that have them tend to disagree on that point). She said I should just continue to treat them with the creams and suppositories (Anucort) I've been using. She said one of the causes for my AD could be the fact that I need to go to the bathroom every day. She explained that once the stool moves into the colon, it could be sending my body signals (even though I don't feel the actual "urge" to have to go). She said that I could try going back to doing my bowel program every day. That of course, I answered with an absolute, "No way!" Secondly, she suggested I could try experimenting with my bowel program medications. She said since I'm taking Senekot daily, that it helping to push the stool down more regularly. Of course, the risk with only taking my Senekot every other day, is that I could potentially become constipated. It's a risky, but more favorable option to try. <br />
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The third thing she suggested was switching from using the magic bullet suppository, to an enema based bowel routine. This is one option my physiatrist also suggested. The surgeon didn't specify a product, however my physiatrist did. I mentioned the Enmeez mini-enemas in my last blog, and got quite a bit of feedback about the product, from other quadriplegic users, on the Care Cure and CDRF forums. The overall consensus of people that responded (about a dozen) said that they preferred the "Enmeez Plus" (which has an added numbing agent) to the magic bullet, and that once their bodies acclimated to using it, they did have effective results, with less AD symptoms. It even specifies reduction of AD on the packaging, as being one of the benefits. The only "catch" to using the Enmeez, is that I would need to allow for time for my body to get used to the new method. Several people warned that it took them multiple uses, before they started seeing consistent results. That means, I'd have a period of unsuccessful BP days, which could entail lots of additional digital stimulation needed, and the threat of having accidents. <br />
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The fourth thing she suggested was trying a new medication called "Vasculera", which is an FDA approved "medical food for the dietary management of the metabolic processes of chronic venous insufficiency, one of the underlying causes of hemorrhoids." She said she wasn't sure how expensive it was, of if insurance (Medicaid/Medicare) would cover it, but gave me one sample and a coupon to try it. She said it doesn't have any known adverse side effects, and it could help the decrease the AD a bit. That was her most appealing and easiest suggestion. <br />
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Her last suggested option was getting a colostomy. She said, since I hated having BP so much that I should consider it. I gave her my long laundry list of reasons as to why it is not something I'd consider (see previous blogs). She poopooed (no pun intended- ok maybe intended) each of my reasons, as if they were no big deal. She went on to tell me about several patients she had performed colostomies on, and proceeded to show me several different bag styles. She said of all her patients, only one women ended up hating hers and asked for it to be reversed. Again, I stressed the fact that I'd still need to get the mucous buildup digitally removed. She said not necessarily. I pointed out the fact that I didn't want to be able to pass gas through two openings. She fluffed that fact off, saying it hardly happens. <br />
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She then continued to go on, and on how "since you have some arm function, you might even be able to apply, or remove peel and stick style bags yourself- if you had the right help." She rummaged through her cabinet to find an example. I pointed out that I have no wrist, hand or finger control or movement. She replied, "yes, but with adaptive equipment and the right help (perhaps a good occupational therapist) you might be able to do some of the care yourself." By that point, I was getting frustrated and had heard enough. <br />
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I just don't get some doctors (or people in general). Can someone please explain to me, what is the f*%#ing point of going through the trouble of having SOMEONE else strap on an adaptive handcuff, so I can "maybe" tear off a bag of my own feces, only to then need that same person to then have to hand me a clean bag, that I can "maybe" reattach to ANOTHER ARTIFICIAL hole in the side of my body?! Number one, who the f&$# am I supposed be fooling; myself or my "assistant"? I'd still need help with every step of the process, down to the fact that someone else would need to strap the damn adaptive device to my hand. Number two, someone else would still be smelling and cleaning up after MY poop! What is the point of going through five extra steps, to have to have help with each step. Only a deluded person would call that "independence" or "self sufficient." It's a damn joke! It's like saying "I can feed myself." Sure, if someone else prepares my food, puts in n a plate, cuts in up, puts my adaptive hand cuff with fork on my wrist, sits me at a table, puts a plate guard on my plate, and places said plate in front on me; then, and only then, I can pierce the food with fork and get it into my mouth. In the time it takes to set up that ridiculous charade my foods cold, and I could've easily been fed, and finished eating. <br />
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I tried really hard to keep my cool. I did mention the fact that I'd still need assistance. No matter how you slice it, colostomy or BP I need other people involved in handling my feces. How hard is that to comprehend? The whole point, is I am a private person. I don't want other people knowing when and how I poop; or urinate for that matter. I'm sick and tired of needing people for every tiny, minuscule detail of my daily life. I'm fed up with having people in my face, touching me, invading my personal space. I don't want to be fed, clothed, bathed, poked, prodded and everything else in-between. I just want a NORMAL life, of independence and privacy. Paralysis FORCES me to accept help and I hate it! I'm especially tired of hearing about how other people live this way. Yeah, and you know what? A good majority of them are as tired, and disgusted as I am. We are stuck, with limited choices. It's take it or leave it. I'm very close to leaving it. <br />
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Like I've said a million times before, "live a few days in my shoes, and then get back to me, on how I SHOULD live, and what I SHOULD do." Until you manage to do that (by the way, I wouldn't seriously wish my condition on my worst enemy), please spare me your critiques and judgement. In the meantime, I'm going to try the Vasculera and discuss the Enmeez with my one nurse. I just lost two of my regular nurses for most of July and August. My BP schedule for July is still half empty, so I'm hesitant to start a completely new regimen. I think I might wait until I know I'm going to have a consistent schedule, with nurses I trust. <br />
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I did ask the surgeon about the bentyl (for my IBS) my physiatrist suggested. I had mentioned it to my regular physician this past Tuesday, and he said it could cause constipation. He advised I wait until I go see the GI. I called the GI I saw back in November (in the hospital), to schedule an endoscopy, but he no longer accepts Medcaid/Medicare. So I have to find someone new to see. The surgeon said she wouldn't recommend bentyl, saying she didn't think it was effective. So I'll have to wait and see about any suggestions for the IBS until I follow up with the GI.<br />
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Related links-<br />
1. http://www.gastroendonews.com/ViewArticle.aspx?d=FDA%2BUpdate%2B%26amp%3B%2BProduct%2BNews&d_id=183&i=March%2B2011&i_id=715&a_id=16840<br />
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2. http://www.enemeez.com/ct/store/productInfo_mini_plus.asp<br />
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- Posted using BlogPress from my iPadChrissyhttp://www.blogger.com/profile/00069146517819619339noreply@blogger.com2tag:blogger.com,1999:blog-9073307022730595940.post-39933110340990198592011-06-27T00:22:00.002-04:002011-06-27T00:24:51.765-04:00Foolish GirlInnocent dreams, of a foolish girl<br />
Blinded by a false sense of security<br />
No control, no planning could ever make it be<br />
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One mistake, shattered lives<br />
Body broken, beyond repair<br />
Life forever changed, thrown into despair<br />
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Dreams disintegrate before my eyes<br />
All I can do is lay and cry<br />
Losing everything I've loved; what was once mine is gone<br />
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Can't repair the damage done<br />
No matter how hard I try, how loud I scream<br />
Life is harsh, cruel, and mean<br />
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I'm left inside a broken shell<br />
Forced to live within my personal hell<br />
Wishing I would wake from this nightmarish spell <br />
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My life is not a dream<br />
Every day I'm faced with harsh realities<br />
All I want to do is run<br />
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Devoid of joy, of hope, of fun<br />
Surrounded by everything I want, so out of reach<br />
Imprisoned in this lonely keep<br />
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Deprived of touch, of warmth and affection<br />
Living has become it's own infliction<br />
Every day, harder than the day before<br />
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I can't take this pain anymore<br />
I long for everlasting sleep<br />
I just want to be at peace<br />
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- Posted using BlogPress from my iPadChrissyhttp://www.blogger.com/profile/00069146517819619339noreply@blogger.com3tag:blogger.com,1999:blog-9073307022730595940.post-50870354504251543562011-06-25T01:28:00.003-04:002011-06-25T23:05:07.641-04:00Haiku: DeathDeath is calling me<br />
I long for its endless sleep<br />
To breath my last breath<br />
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Wishing to be free<br />
Tired of this misery<br />
Take me to heaven<br />
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God, be merciful<br />
Release me from this rough life<br />
End my suffering <br />
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I am so tired<br />
Please don't let my eyes open<br />
Take me in my sleep<br />
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I've suffered enough<br />
Carry away my burdens<br />
Ease this awful pain<br />
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Let my soul escape<br />
I am chained to this body <br />
Give me my freedom <br />
<br />
Death I pray for you<br />
I would gladly embrace you<br />
My only savior <br />
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- Posted using BlogPress from my iPadChrissyhttp://www.blogger.com/profile/00069146517819619339noreply@blogger.com0tag:blogger.com,1999:blog-9073307022730595940.post-22597534192312001452011-06-21T21:30:00.002-04:002011-06-22T00:06:28.418-04:00Looking For Feedback, Regarding BPI've been having a lot of issues, regarding my bowel program and a few other things. Today I went to Kessler, to meet with my physiatrist, in hopes of getting some answers. She gave me a few things to think about, and answered a few question.<br />
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I'm a C4/C5 complete quad, with no functional mobility. I'm hoping to connect with some other people, with similar injuries, to see if they've experienced similar problems. My main questions revolve around my BP. I've posted this on the Care Cure Forums & CDRF forums. I figured between those two sources, and my blog readers, I might be able to get some feedback, from others in my situation. It's not that I don't trust my doctor's advice, it's just that making suggestions, & actually living it, are two different things. What sounds practical on paper, isn't aways the case, in reality.<br />
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Anyway, here's what I posted:<br />
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I've been experiencing autonomic dysreflexia a lot lately (I have daily episodes-more so on BP days), and have been miserable. Two of the biggest culprits to my daily bouts of AD (sweating, chills, cold sweats, headaches, etc.) are my bowels and the fact that I have hemorrhoids. My physiatrist confirmed that my diagnosis (from before my accident) of having irritable bowel syndrome, CAN still be creating pain, and discomfort I don't feel, however my body interprets as AD. She said even though I have a neurogenic bowel and bladder, the IBS might be creating a lot of my AD. In terms of the chest pain I get, that we haven't been able to determine a cause for, she suspects it's GI related (however did say there is also a chance it's nerve pain). She recommended I follow up with a gastroenterologist to discuss getting an endoscopy, and also recommended I try taking bentyl for the IBS. She suggested I have the hemorrhoids surgically removed, as they can definitely cause AD. She also wants me to get a urodynamics test done, and spoke to my urologist. <br />
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The other thing she discussed with me is my bowel program. I absolutely HATE having to do it. It is both physically, and emotionally taxing on me. However, my only other "option" is getting a colostomy, and I absolutely refuse to do that. <br />
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Anyway, the bowel program is very uncomfortable for me, and creates A LOT of AD symptoms for me. I described to my physiatrist how we've been doing my BP (using the dibucaine ointment, with magic bullet suppository and digital stimulation). I explained it can take up to two hours to complete, and that the nurses have to digitally check me multiple times. Every time the nurses do the digital stimulation, it creates AD. I do my BP, every other morning, on a commode. My blood pressure is initially very low (as low as 70/50) and usually rises to normal ranges (100/60). By the time I'm finished with BP, I'm achy, have the cold sweats and very fatigued. I take my shower, and just want to rest for the remainder of the day. It almost feels like having the flu. I hate it.<br />
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My physiatrist said that my nurses should only be doing two digital stimulations (once initially & once to check if I'm finished). She said, if I require more than that, that I should consider upping my BP related medications (senakot & Colace). I know several people that have BPs and know for a fact that they also have their nurses do the digital stimulation multiple times. I'm hesitant to start messing with my medication doses, because I don't want accidents. She did say that the magic bullet suppository, although effective, is known to create AD. She suggested I try using a product called "Enmeez" and gave me a few samples. She said she had a lot of patients with AD issues that preferred using the Enmeez to magic bullets. <br />
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I know the nursing agency I use is familiar with Enmeez, because my case supervisor gave me some samples a while back. I'm VERY apprehensive about trying it, only because it is like an enema. I'm not sure how the nurses will be able to administer it, while I'm sitting on the commode, without making a huge mess on the floor. We normally put a pad down on the floor, in front of the toilet, for when the nurses check me. If I start to go, before they push me back over the toilet, it is very bothersome to me. I'm really traumatized by the process. I find having to have help going to the bathroom, humiliating and degrading. I'm so sick of BP in general. I hate needing to do the digital stimulation so often, however I'm not sure how else, we can be positive I've finished going (or if have gone adequately) without needing to do it.. I'm curious to see if the Enmeez with work better, that the way we are currently doing my BP. I'm willing to try. <br />
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I'm wondering if anyone else with a similar injury, that has to have a BP, would be willing to share their thoughts, based on their experience? <br />
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1- I've only talked to a couple of friends regarding their BP, and they said they also need to get "checked" (digitally) multiple times during their BP. I'm wondering if my doctor was wrong, in that respect. <br />
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2-I'm also curious to know if anyone has tried using the Enmeez product, instead of using a suppository, and if so how they used it (set up- on a commode, or in bed) and if they found it caused less AD? <br />
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3-I'm wondering if anyone else who has had a history of hemorrhoids, has had them surgically removed? If so, did you find a decrease in AD episodes, and did the hemorrhoids return? <br />
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4-Does anyone with a high level injury also have IBS? If so, have you tried bentyl? I've tried probiotics and the drug "pamine" (prescribed before my accident) and neither helped, or offered relief. <br />
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Any feedback would be greatly appreciated! Thanks :)Chrissyhttp://www.blogger.com/profile/00069146517819619339noreply@blogger.com3tag:blogger.com,1999:blog-9073307022730595940.post-64960806705303408502011-06-19T23:51:00.003-04:002011-06-20T00:03:40.510-04:00My Life Revolves Around ShitMany of you that read my blogs, know that I struggle A LOT with bathroom related issues. Thanks to my accident, I've been living as a high level (C4/C5 complete) quadriplegic, for the last six years. I have no functional mobility whatsoever, and rely on help for EVERY aspect of my daily life. To complicate matters, I have a diagnosis of having irritable bowel syndrome (IBS), since before my injury. I'm honestly not sure if my IBS is still (considering my injury has left me with a "neurogenic" bowel and bladder) contributing to my daily woes, and discomfort, but am anxious to get some answers. <br />
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My regular doctor, and doctors I've seen at the hospital, only ever postulate and hypothesize, based on my theories, and descriptions, but never seem to have clear cut answers, or definitive reasons for why I'm so uncomfortable, and sick, so often. I realize that the fact that I can no longer directly feel what's causing my symptoms, makes it difficult for my doctors to draw conclusions, or pinpoint things, but honestly I feel like the vast majority of the time, they can't give me answers because they don't understand the nature of spinal cord injuries, and its effects on the body in general. I feel like, most times my doctors are treating me, like they would the average able-bodied person, and that is why I'm not getting any answers, or finding any relief. I'm not average, and my body no longer works according to the "normal" rules of science. <br />
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My spinal cord injury has severed the connection between brain and body. The messages I do receive are messed up, mangled and chaotic. When my body experiences pain or discomfort below my injury, it responds by signaling me with autonomic dysreflexic (AD) symptoms. AD symptoms vary (headache, sweating, chills, cold sweats, tingling, phantom pain, chest pressure, muscle spasms & fevers), but on the whole, I've come to recognize them, and have a handful of common known triggers. AD episodes can be life threatening, because quite often, my body reacts to pain I can't feel, by elevating my blood pressure. The elevation in blood pressure, is what creates the secondary symptoms, like sweating, headache and chills. When I begin to feel symptomatic, I know to ask for help, to try and alleviate the cause of the pain (such as my catheter being pinched, or my clothing being wrinkled). Gone unchecked, and unresolved AD can lead to stroke and/or death.<br />
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Unfortunately, one of the biggest causes of AD for me, is my bowels. I am stuck in a vicious cycle, of never ending discomfort, and pain. My spinal cord injury, and my paralysis have made me a literal prisoner to my body, and its needs. I must eat to survive. Likewise my body must expel waste. Normally, it's not something the average person puts much thought into, or has cause for distress. For me, I feel as though I have become a slave, and prisoner to the simplest of bodily functions. There is no escaping it. It has become so troublesome and uncomfortable for me, that something that is normally simple, private, and in the back of the mind, has instead become the center for which, my life revolves around and is dictated by. It is awful. <br />
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My paralysis leaves me with so few choices, none of which are pleasant. I must eat to live; that is a given. I must go to the bathroom; that too is a given. However, nothing in my life is that simple, because I cannot do anything on my own. I need help for everything, including eating and yes, even shitting. For the past six years, I've endured having a bowel program (BP), in order to get rid of the waste I must expel, in order to keep living. It's an awful ordeal, that involves a nurse manually removing stool from body, every other morning. Since I no longer feel the sensation of needing to "go," or the ability to bring myself to the bathroom, or even the ability to "push" it out, those ordinarily natural processes must be FORCED into action. <br />
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In order for me to go to the bathroom (shit), my nurse needs to insert a suppository, and digitally stimulate my rectum into going. I'm forced into sitting, strapped to a commode for one to two hours, while my nurse manually stimulates, checks, and rechecks my colon, every ten to twenty minutes, depending on how quickly I go (depends on amount, and consistency). Although I can't feel the digital stimulation directly, it creates AD symptoms. The process is both physically, and emotionally taxing. Every time my nurse checks me, it sends a chill up my spine, creates goosebumps, sweating, and discomfort (sometimes accompanied by chest pressure and nausea). On top of which, my overall condition and constant stimulation, has created chronic hemorrhoids. Again, even though I don't feel the pain of the hemorrhoids directly, I'm positive they contribute to my daily bouts of AD. <br />
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The frequency of having a bowel program, depends on the individual. When I was initially injured, I had to have it every night (policy at the nursing home I lived at). They made me do it in bed, after my showers, laying on my side. It was disgusting, painful (for my shoulders) and I hated it. Since moving to my own place, I switched to having it done every other morning, on the commode (over my toilet). Although it has been a big improvement, being able to do it over the toilet (in the privacy of my own bathroom- as opposed to in a bed, in the same room as my roommate) and before getting showered, it is still uncomfortable, and far from ideal. Needing to have ANYONE help me in the bathroom, or with personal hygiene has been horrific, and has never gotten any easier to deal with. <br />
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Unfortunately, I don't think I could get away with having it any less than I already do. I know a couple of people (with similar injuries) that do their BP every three days. I wish I could do that. The thing is, I suffer from AD symptoms every day; having several episodes each day (sometimes the symptoms last for hours- like sweating, chest pressure and chills). I've already ruled out a million more serious possible causes, through testing (EKG, ultrasounds, CAT scans, blood work & X-rays). Ninety five percent of the time, I have someone check me for visible problems, and we come up empty. That leaves me thinking that most, if not all of my AD is caused by something to do with my lower hemisphere. I know for sure that my hemorrhoids and gas are two big culprits; neither of which I can do much about. <br />
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I wonder if my IBS still has an impact on my body. No one has been able to give me a definitive answer. I'm going to see my physiatrist on Tuesday, in hopes of getting some clear cut answers. I know when I was on my feet, I went to the bathroom every day (sometimes several times). If my colon is still spastic, it could certainly explain why I'm dysreflexic so often. That said, even if she tells me, "Yes Christina, your IBS could be creating AD and offer an explanation as to why it's been so difficult for you to regulate your BP" it doesn't really offer me any relief. I don't know exactly what I expect for my physiatrist to tell me, except if my theory is right, or wrong. Either way, I'm pretty much stuck with the situation I have. I guess I just want to hear her say (essentially) whether I'm screwed, or not, and if she has any suggestions that I haven't yet tried (doubtful). <br />
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I've tried taking probiotics to help with my IBS, and prescription medication; neither did anything. I've tried pinpointing food triggers, but am never successful. The only definite trigger for my IBS flaring up, when I was still on my feet, was anxiety. I can't say that I've noticed a definitive correlation, since my injury. Given my condition, and everything I have to deal with on a daily basis, I'm pretty much ALWAYS under a high amount of stress and anxiety. Not to mention, my AD has seemingly gotten worse, and more frequent, as time has gone on. I would've thought if stress and anxiety alone were the causes, I would've had more issues when I was newly injured.<br />
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That leaves me thinking that my body has gotten to the point where it wants to "go" every day, and that's why my AD has gotten to be so unbearable. If that's the case, it would also account for why I have occasional "accidents", despite successful having BP (or why it's often hard to regulate at all-despite taking consistent bowel related medication and eating healthy). As it is, I've already had DOZENS of nurses have to help me with BP, over the past six years. Every time I lose a nurse and have to train a new one, it is stressful, and traumatic. I absolutely abhor BP, and dread it. Every other night, I'm full of anxiety and despair, knowing I have to do it the following morning. I've gotten to the point where, even if my body is demanding to go every day, I just can't handle it emotionally. This past year, I've gone through several nurses (I use an agency called Bayada- Medicare covers the sessions) due to circumstances outside of my control. In fact, tomorrow and Thursday I'll be meeting new nurses, because two of my regular nurses won't be here in July (personal reasons & vacation). That's two more people that have to see me naked, touch me and witness me going to the bathroom. I'm dreading it, and wish I could say "No! Go away and leave me alone." <br />
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Paralysis doesn't let me say "no." It doesn't leave me with many choices. I need to go to the bathroom, in order to live. I need help, in order to go to the bathroom. Knowing I'm going to be training with TWO new nurses, has just added salt to my wounds. Some people have asked me, "Why don't you just hire a private duty nurse, and not use a nursing agency?" One, my nurses technically are "private duty." The agency assigns them to my case, and Medicare covers the set three hour block of time, every other day. Two, in order for Medicare to pay for the service, it has to be done by a qualified nurse. I can't just pluck someone off the street and train them, like with my aides. A bowel program (at least in NJ) is considered to be a treatment, which involves "skilled nursing care." Having a nursing agency on my case, makes the most sense, because if a nurse quits, calls out sick, goes on vacation, moves, or has a family emergency (which have all happened to me already), there are backup nurses that are already trained. I have to have BP, regardless of my nurse's situation, therefore I can't afford not to have a backup in place. It's a necessary evil. <br />
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I have two options on the table. One, I can stick with accepting a BP: which involves nurses, which I hate which is long, which relies on a schedule, which is physically and emotionally taxing, and which is highly intrusive and invasive. Two, I can get a colostomy. I've mentioned in previous blogs why I don't want to even consider a colostomy. To me, it's not even an option worth mentioning. As much as I despise the idea of getting a colostomy, and have sworn to myself I'd never get one, the AD and BP are really wearing me down. I honestly don't know how long I can keep living this way.<br />
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Out of desperation, I decided to look even deeper (than I already have in the past) into what it would be like to get the colostomy. So many people have irritated me, by making it seem like getting one is such an "easy" decision, and better option. Sure, it's easy for OTHERS to flippantly suggest I undergo ANOTHER surgery. It's easy, when YOU aren't the one getting sliced open. It's easy when you aren't the one that will have to live every day, for THE REST of your life, with a bag of shit strapped to your side. It's easy, for the able-bodied people, who have told me about their personal experiences with having HAD (key word- their colostomies were eventually reversed- once I do it, the likelihood of going back to having a BP, is slim to none) a colostomy. It's easy for all the quads who talk about having one, that CAN TAKE CARE OF IT INDEPENDENTLY. <br />
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The more I've read about colostomies, the more I've discovered as to why, it would NOT be a better option for me. First, I would need to undergo surgery, which would require several days in the hospital, afterwards for recovery. The absolute LAST place I want to be at this point, is in the hospital. There is no guarantee that a colostomy would alleviate my AD. I'd be creating ANOTHER artificial opening in my body (in addition to my suprapubic catheter), that would need to be maintained, and could become infected. The bottom line is, I'd STILL need help with going to the bathroom. I'd need a nurse to clean the stoma, change the bags, and/or irrigate it. No matter what I do, someone else has to handle, and clean up after MY shit. It's not like the colostomy would care for itself.<br />
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As much as I hate BP, at least it's over and done with, in a set amount of time. Yes, I do occasionally have episodes of incontinence. However, from what I've read, there is nothing to guarantee that I wouldn't have accidents with a colostomy. One, the bags can bust or leak (as I've had happen with the catheter). I'd need help cleaning that up. Two, even though they'd be re-routing my colon, mucous builds up in the rectum, and needs to be digitally removed (at least once a month- most people fail to mention, or know about this). Three, did I mention, I'd have a bag of shit strapped to me, all day, every day?! Four, some people do "cap off" their stomas and prefer not to wear bags, instead they essentially flush the stool out (similar to an enema, but through the stoma). However this only works once your body has acclimated to having the colostomy (which depends on the individual and can be effected by diet). The other catch, is that this capping off can create AD (since gas and stool build up) and also tends to lead to more frequent accidents. Even the irrigation process itself, could potentially create AD. Not to mention, like I pointed out earlier, someone else would need to be doing all of the care for me.<br />
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So basically, I'd be taking a huge gamble, with the high probability of having to deal with most of the problems that I already have with BP. Only, I'd have the added nuisance of having another artificial hole, need to get (and rely on) more medical supplies, and have another bag of bodily waste strapped to me. I'd still need to have help in that area, and have strangers in my business. There's just no avoiding that. Instead of being embarrassed about wearing Depends, I'll be embarrassed by the bag. Oh, and did I mention the added "treat" I discovered about having a colostomy?! You pass gas out of your side, in addition to your ass. Lovely! Double the embarrassment, lack of control and shame. Thanks, but no thanks. It looks like I'm stuck with BP. Chrissyhttp://www.blogger.com/profile/00069146517819619339noreply@blogger.com2tag:blogger.com,1999:blog-9073307022730595940.post-71082173402373278352011-06-08T01:22:00.003-04:002011-06-08T12:47:07.216-04:00So Much For My "Good" DayThis morning I had to shlep up to Newark (an hour drive- and very bad neighborhood), with my mom, to go get my psychiatric evaluation done. Luckily, we didn't hit any rush hour traffic, or get lost on the way. We even got a great parking space, and the facility was very wheel chair accessible. Despite hating getting up early, and the long drive, I'm grateful to Jeanne (the palliative care consultant I've been talking with, for several months now) for referring me to Dr. Shihabuddin. She is not only already affiliated with the VNA, but she also accepts Medicare and has experience working with hospice patients. <br />
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Our meeting went very well. She was very objective, and made me feel justified, and validated my reasons, for feeling the way I do. She said she would certainly declare me "mentally competent," which is crucial. That ensures my advanced directive, and DNR will be upheld, and respected, without contention. She also said she did not feel I was clinically depressed. She agreed with me, that my issues are issues of conviction, that they are directly related to my physical condition, and my personal standards for quality of living. It felt so good to hear those words. I just wanted to hug her! Thank you, God, someone who can see my situation, with unbiased eyes, and give me a logical, rational validation. I'm not crazy, nor depressed. <br />
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That said, she fully acknowledged the difficulties of my situation. She understands my exhaustion, and frustration, but also my deep care, concern, and worry for those closest to me; my mom especially. She and I discussed the medical implications, of refusing various levels of treatment, and she gave me several medical recommendations, in terms of my medication, and hospice care (if/when I need it). She also took the time, to include mom in the dialog, and explained her diagnostic evaluation to mom, stating that my issues are a matter principle, and influenced by physical suffering, not depression. She acknowledged how hard this all must be for mom, and explained that it was important I have this evaluation done, because no matter how badly I'm suffering, there will always be the concern, on the part of my doctors, that my family might try to fight my wishes, or sue after my demise. Mom said although it makes her terribly sad, to think about losing me, she would respect my choices. I already knew that, but I felt relieved after our meeting. <br />
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Emotionally, it was a rough morning, but productive, and necessary. I am at peace with my decision, to no longer wish to be hospitalized, or take antibiotics. I'm tired of fighting. I feel like if I get sick, my body will either fight it, or it won't. If I'm "meant" to live, I will, as long as I possibly can. Like I explained to my mom, and Dr. Shihabuddin, ideally I will get sick, and that will be out of my control. Whether to treat it, or not, is a mute point, for me. I rather not have to resort to refusing food/water, to hasten my own death, but if I get sick, I'm hopping on the train out of here. I'm satisfied with what I've accomplished, given my situation, and I'm tired of being sick. I feel like I've had one foot in the grave, for six years now. I've been cheating death, through medicine, and unnatural, painful treatments, for the sake of my loved ones, and at a terrible emotional and physical price. Dr. Shihabuddin recognized the fact (I'm grateful) that living for the sake of others, sacrificing my own happiness, and against my will, can not be sustained forever. When the time comes, that I can't bear this life another day, I'm ready to go. <br />
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After leaving Newark, I decided I wanted to go clothes shopping. I had thought about buying a few new things for the summer, the other night, but decided against it. Shopping for clothes online is tough, cause women's clothing sizes are so inconsistent. I have clothes in my wardrobe ranging from extra small, to large. Many times I end up having to send things back, and forth through the mail. I figured, since it was still early in the day, and I was feeling relatively comfortable, we might as well swing by "Mandee's" on the way home.<br />
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The store is a favorite of mine, and close by my old apartment. As usual, it was bittersweet, being in my old stomping grounds. I always feel a twinge of pain, rolling into a place, I once walked in. Before my accident, I was making good money, with minimal bills. I was definitely a bit of a shopaholic (no debt though), and clothes have always been a weakness. I used to hit Mandee's once every couple of months. I'd spend hours, trying on STACKS of outfits. I can remember walking back to the dressing rooms, my arms so full of clothes, I could barely cary it all. I loved dressing up, and buying new clothes. <br />
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My wardrobe is still pretty much busting at the seams (no pun intended), despite giving away bags, and bags full of my "pre-accident" clothes, that I can no longer wear (short skirts, shorts, bathing suits, short dresses, etc), or have no occasion to (business suits, cocktail dresses, clubbing clothes, etc). I've given away countless pairs of jeans, high heel shoes, skirts, you name it. Most of my wardrobe now, consists of easy to wear (and put on me) casual stuff, like baby doll tee shirts, and sweats, or stretch pants. I seldom go out, and have few occasions to dress up anymore. I pretty much dress the way I used to dress, to go the gym, with the rare exception to my trips outside. Even so, my draws are still over flowing, and my walk-in closet is packed. <br />
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Today was like I said, bittersweet, but also fun. No matter how awkward I might feel, being pushed around, not being able to easily access the whole store (clothing stores are always too crowded with racks, and hard to manuever in a wheelchair), or not being able to try clothes on, there is still that piece of me that enjoys it. We probably spent an hour, looking through racks of clothes, and I ended up with two new skirts, a pair of capris, six new shirts, and two new pairs of sandals. I'm officially ready for the summer; if I actually push myself to go out. <br />
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After shopping, mom and I stopped at Wendy's for lunch. I love fast food (although my stomach & hips might not agree), so it's always a welcomed treat. I try to choose small portions. It was yummy. All in all, it was a shaping up to have been a rare "good day." I don't get many of those anymore. <br />
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I should've known better, not to jinx myself. My good mood was shattered, a few hours ago, when my sister decided to open up today's mail. We had had a routine maintenance inspection, of our apartment, yesterday. Today we got a letter, citing us for a pet violation. Apparently, the complex (we live in a "luxury" apartment complex) has a "two pet" maximum, that we never realized. As it is, I have to pay $50 rent, per pet, per month. That's on top of the non-refundable $350 I had to initially shell out, for each of them. <br />
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When my ex-roommate Steve decided to move, and my backup roommate bailed out last minute, three years ago, my little sister came to my rescue, and moved in with me. She had already had a dog, Precious, from before my accident. I was more than happy, to have her join us. Shortly after they moved in, I adopted my cat Tommy. I honestly never realized there was any limit, especially given the fact that I am paying rent for them. I mean between the non-refundable fees, and monthly rent, I have more than covered for any damages they might create. The thing is, they're both well cared for, and neither of them is destructive. <br />
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When we got our second dog, Naama (mini-pin) I admittedly, didn't report her. Frankly speaking, because I'm on a fixed income, and was hoping not to have to pay another $50 per month. It has finally caught up with me, thanks to this recent inspection. I would've never adopted her, if I knew about the rule. However, now I'm totally attached to her. She's the closet thing I have to a kid. She's my baby, and I love her.<br />
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The complex sent us two conflicting letters, that have left me perplexed, and totally bummed out. One letters says, congratulations on your new dog, please register her on your lease, and that they will begin charging me, the $50 pet fee, on my upcoming statements. The other letter says, we're in violation, and must get rid of one of my pets. Naturally, I'm heartbroken. <br />
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I contacted my lawyer, to see if there were some way I could fight it, but he says they have the right to enforce it, if it's in my lease. So, I decided to resort to old fashioned begging. I wrote them a letter, admitting my error, and said I was sorry. I also explained the fact that I am quadriplegic, and practically bed bound. I told them the truth, that my pets are one of the few things that bring me joy, and comfort. I said that my animals were not destructive, and that I'd be more than willing to pay the extra fee. I pointed out the fact, that they have therapeutic value for me, and that I could ask my doctor to write something, to that effect. It is the absolute truth, that they improve my quality of life. I'm hoping and praying that whoever reads my letter, will be compassionate, and willing to make the exception.<br />
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So much for my "good" day. Now I'm going to be anxiously stressing out, until I receive their answer. If we do have to put one of the animals up for adoption, we've decided on Tommy. It makes me so sad, to think about losing him. He's such a good, unique, smart, funny cat. I really love him. <br />
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- Posted using BlogPress from my iPadChrissyhttp://www.blogger.com/profile/00069146517819619339noreply@blogger.com4tag:blogger.com,1999:blog-9073307022730595940.post-48431118956757086062011-06-06T01:32:00.004-04:002011-06-10T21:36:19.094-04:00Life Is Unpredictable & Full Of IronyToday marked the six year "anniversary" of my accident. It's certainly not an anniversary worth celebrating, but one that is impossible to ever forget, or ignore. This year brought with it a twist of surprise, and added sentimental value. Six years ago, one simple mistake, would change my life forever. If my accident has taught me anything, it is how very unpredictable life can be. <br />
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This year, marks the first completion of the weekly cycle. Meaning, this is the first year, since my accident, where the date, and day it falls on, is the same as on my accident. My accident happened in the very early hours, of Sunday, June 5th, 2005. This year, June 5th, also landed on a Sunday. Last night, I couldn't help but feel an added twinge of grief, as I replayed the memories of that "fateful" Saturday night, where my life got flipped upside down. To this day, I'm unsure of the precise time of my accident, but know the first hours of that Sunday, were spent in the Emergency room, terrified of what was happening, and in shock of what I'd done. That weekend, my last hours on my feet, and my first few hours paralyzed, will forever be etched into my mind. It is a day I wish I could scrub from memory.<br />
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Ever since the moment my neck snapped, I have been replaying those last few memories, on my feet, in my head, and fantasizing how different my life might be, if I had never gone to that party, never drunk, or never dove. I have reviewed, replayed, relived, analyzed, questioned, and scrutinized every second, of that final day on my feet. I have beat myself up, and find it hard to be forgiving, to myself, for my foolish actions. I have wondered, "What if..." to a million different scenarios, and have searched in vain for reasons, or self explanations, for why I chose to do, what I did. The lists go on, and on: we should've never gone to that party, I should've never drank, I should've had more to eat, I should've waited to go swimming, I should've used the ladder, I should've never dove. Each action, seems more stupid, worse and irresponsible than the one before it. The truth is, there are no reasons, or good explanations, and even if there were, it wouldn't change the outcome. <br />
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Although I never intended to do harm to myself, or anyone, my actions that day, have caused me, and my loved ones a tremendous amount of pain and grief. The combination of many common mistakes, resulted in a gigantic disaster. One moment I was happily, enjoying a self sufficient adult life, the next I was crippled beyond saving. I went from having everything I wanted, to my worst nightmare, overnight. While my life has been the most permanently effected, my accident has had a rippling effect, on everyone that was closest to me, at the time of the accident. <br />
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My accident created a horrible strain on my relationships, with many of the people I love. The sheer magnitude of loss, the fear of the uncertain, and the reality of the irreversible nature of my injury, effected everyone I love. The Christina I was, died the day of my accident, and it's been a very bumpy rode, living a completely new reality, being a completely new person. My accident has changed the way I can interact with the people I love, and has forced limitations on what I can do, and how much of a role I can play, in the lives of my family and friends. I've had to come to terms with my new life, and they've had to come to terms with the new me. <br />
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My family and friends have at times been my biggest obstacle, while at other times my biggest supporters. I have had many fights, falling outs, and disagreements, with the people closest to me. Thankfully, most of my relationships have stood the test of time, and have whethered this storm, called paralysis. Most of my loved ones have stayed right along side me, through laughs and tears, through thick and through thin. Although they might not all get along with one another, or see eye to eye, they have put aside their differences and rallied behind me. I am so grateful for my family and friends. I feel so blessed, to have so many people that love, and support me. <br />
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The rode has been especially difficult, these last couple of years, and I know for sure, I'd be long dead, if it were not for the many loving hands and hearts, that prop me up, and give me strength. There are a few people, that I have lost through this all, and for them, all I can say is sorry. I wish I knew a way to fix my mistakes, or how to repay them. It makes me sad, to think I am missing out, on being a part of their lives, and vice versa. All I can do, is try my best, with whatever time I have left.<br />
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2,190 days ago, I thought by now I'd be married to Jimmy, we'd have a couple of kids and I'd be a veteran teacher. I never thought for a moment, that life could throw me a curve ball, or that life would not fall into place, like I had planned. I thought I'd be healthy, and able to care for myself, until I was old and grey. The future seemed brighter than ever, and full of a million possibilities. I was the happiest I had ever been.<br />
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2,191 days ago, my entire life was crumbling in front of me, and my future was terrifyingly uncertain. I was newly paralyzed. I was vulnerable and scared. I was in and out of consciousness, and on the verge of death. I knew I might lose everything. I was in tremendous pain, and utter shock. I couldn't imagine a worse situation, a worse moment. I prayed with all my being, that somehow things would be ok. My loved ones were fighting, blaming, and fracturing. I didn't know who to turn to, or what to do. <br />
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Today, was not how ever imagined it to be; not during my best, or worst days. I spent the day with Jimmy, my exboyfriend. It was bittersweet, and strangely ironic, spending today with him. It was a mix of extreme high, and extreme low emotions, for both of us, as we remembered a day that changed both our lives, forever. Although we are no longer together, we will always love each other, and share a special bond. He is still one of my closest, dearest friends, with whom I feel I can be most open. He is the one that saved my life, that night, and pulled me from the water. Even though we split (romantically) months after my accident, we have been perpetually drawn back to one another, over these past six years. My accident has changed us both in profound ways, but despite everything, we share a bond, unlike any other.<br />
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Six years ago, I had bought him a birthday cake, that we had planned to share together, that coming Monday (6/6/2005), in celebration of his twenty third birthday. Those plans, like so many others, were ruined, and never came to fruition, because of my accident. I have always felt like my accident stained his birthday, with such a horrible memory. I have always wished things could've turned out differently for us, and that we would be able to share a happy memory, for his birthday. Today that wish came true.<br />
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Although today was not the ideal day, of how I wished to be spending Jimmy's birthday, I was thankful nonetheless. I feel blessed to have him back in my life, even if it's just as friends. Of course, I'll always wish for more; for both of us. However, I've come to accept my reality, for what it is, and know no amount of wishing can make it be, what I want it to be. I tried my best to enjoy our time together, despite my longings, and limitations. I tried to savor what I could, and be glad to have sitting beside me. <br />
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I don't know what the future holds for me, for Jimmy, or "us" for that matter. I gave up trying to predict the future a long time ago. All I know is that, despite my cold sweats, and relentless chills, I was able to have a few laughs, and enjoy seeing his smile. It felt good, taking a bite into a piece of his birthday cake, and for as much as it stung, to not be able to do everything I wished we could be doing, I am so glad we spent today together. Today was a day of closure, and an opportunity to create a positive memory. I hope we can make a few more happy memories together, before this life is over. <br />
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- Posted using BlogPress from my iPadChrissyhttp://www.blogger.com/profile/00069146517819619339noreply@blogger.com0tag:blogger.com,1999:blog-9073307022730595940.post-14358218708684761682011-05-31T23:25:00.002-04:002011-06-01T22:51:29.223-04:00Why I Think I Should Be Allowed To Die With DignityFor those of you that read my blog regularly, thank you. As you know, in my previous blog, I discussed the HBO documentary, "How To Die In Oregon." As you also know, I'm a firm supporter of the right to die, and advocate for patient's rights to determine his/her own quality of life. I commend the citizens of Oregon, Washington, and Montana for being objective, and legalizing physician assisted deaths. I think it should be legalized in every state. <br />
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A special thanks to Nancy, for reading my previous blog and giving your feedback. Thank you so much for your response! I was so touched by your love, commitment and dedication, to your husband. I commend you, and thank you, for helping to raise awareness to this subject. Watching the documentary, really struck a chord inside of me. This is an issue on my mind daily, and very near to my heart. Your comments have given me food for thought. They have also left me with the need to respond, to your thoughts on paralysis and how it would, or wouldn't qualify someone for a physician assisted death. I would like to respectfully disagree, in my case, and here's why: <br />
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I'd like to take this opportunity to clarify my own beliefs, on euthanasia and explain why I feel I too, deserve the right to die with dignity. I hope everyone can read my arguments with an open mind. Keep in mind, my reasoning and arguments are not meant to offend, or necessarily aimed at any particular individual. I'm just stating my beliefs and thoughts, about my situation, and continuing the dialogue that was started in my previous blog. I'm not mad, or offended by any comments made to me. I would just like to expand on what I've already stated, and explain why I feel a law like, Oregon's "Death With Dignity Act" should apply to my case, in particular. <br />
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First off, it is very easy to dish out lofty advice, when you are not the one facing harsh realities, extreme physical limitations, and chronic physical suffering. I for one, am sick and tired of able bodied people, who can enjoy the simple luxuries of being able to do things, like cleaning their own bottoms, and blowing their own noses, tell me how I should live my life, and why I should continue to suffer. I'm tired of hearing the word depression, being used as scapegoat, to ignore, or excuse the real medical, and physical trials I must endure every day. I don't ever get a break, or a time out. I don't have many choices, or options. It's "this is what you must do to survive, with a high level spinal cord injury," or I let nature run it's course, and I die. Those are MY only two options. <br />
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Unless you've been in my shoes, I have a hard time absorbing any justifications, or reasonings as to why I MUST, or SHOULD continue to suffer. I'm not just referring to "quadriplegics" in general. I'm talking about women, with high level complete spinal cord injuries, that are in their thirties, that were injured in their twenties, that have no children, that lost a career, that have IBS, and that suffer from daily bouts of autonomic dysreflexia. If you are one of the few people on the planet that fit in that category, by all means, share your insight, and advice on coping with me. <br />
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If you don't belong in my boat, please save your judgement, and just take a moment to think what you might do in my situation, and how you might want to be treated. Now, imagine the last time you were sick with the flu. Remember the discomfort, dull aching, and fatigue. Now pretend someone is telling you that you are going to have that flu, that same aching, pain and fatigue for the rest of your life, every day, and that you can no longer care for yourself, indefinitely. Think of having to have dozens of people see you nude, and touch you, on a daily basis. Imagine needing to ask someone for every need; from scratching an itch, to brushing your teeth, to tying your shoes. I can guarantee you, from experience, that your worst fantasies, would not do justice, to the reality of actually living this way. I have lived on both sides of the fence, both as an able bodied adult, and as a disabled adult. I know exactly what I'm missing out on, and how much better life could be. <br />
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In regards to my situation, it is not merely the fact that I'm paralyzed, that makes me want to end my life. I'm certainly not saying that everyone who is paralyzed should want to die. My body, and it's reaction, and response to being forced into living this way, has become extremely painful, and uncomfortable. I deal with autonomic dysreflexic symptoms, on a daily basis. My tolerance for sitting is poor. I'm left feeling ill, with low grade fevers, chills, chest pressure, fatigue and cold sweats almost every day, for the past two years. Living with paralysis, and dealing with the immense magnitude of loss, was hard enough, when I was feeling decent. Feeling ill, on top of everything else, day in and day out, with no relief, and no answers, has made this life unbearable. <br />
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After seeing the film, I wrote to the state of Oregon's contact email address (http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Pages/index.aspx), to determine if I'd qualify to die, under the law. Paralysis is not a terminal "illness," but in my case (C4/C5 complete- no functional mobility) it is most certainly a terminal condition. Every day my body is forced, unnaturally, into performing functions it can no longer do on it's own. I have no ability to be self sufficient whatsoever. It is only through medical intervention (pills, bowel regime, catheter, and nursing care) that I am still alive. If I were to refuse help, I would most certainly be terminal. I find it hard to understand why the government, wouldn't, or doesn't want to recognize that fact. It has nothing to do with high level quadriplegics being worth less, or disabled people being less valuable. It's just being realistic, and stating facts. Having a high level, complete spinal cord injury is a terminal condition, without treatment. That is a fact. <br />
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I think what is important, or the larger issue at hand, is the degree of suffering an individual has to endure, given his/her medical prognosis, weighed in conjunction, against the likelihood of being "cured," or alleviating painful symptoms. In my case, my spinal cord injury has created a tremendous amount of discomfort, and pain (physically, and emotionally). Even if I were to rid myself of the depression, that I don't deny exists, to a certain extent, I am still left with chronic illness and AD symptoms, that the doctors have not been able to successfully treat, or alleviate. <br />
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When you couple the physical suffering, on top of the severe limitations, and loss that I've endured, living itself becomes unbearable. Not to mention the treatments that paralysis forces on me. Under any other circumstance, in any other context, my bowel program alone, would be considered torture. I don't really have a choice. My body no longer functions properly. In order for my body to get rid of the waste that my body produces, a nurse needs to manualy stimulate my sphincter muscle, through use of suppositories, and manual stimulation. I was never asked if this was ok. Life with paralysis forced it upon me. I either accept it, or die from impaction, and sepsis. Just as people in Oregon, and Washingon have the right, to say they don't want to have to be cared for, neither do I. I could get a colostomy, but I feel like that is just another unnatural treatment, and do not want it. Personally, I don't think it's right for others to insist I do these things, or expect me to suffer. <br />
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I've been seriously considering exercising my right to refuse food/water, as a means to end my suffering. I have been consulting with a local palliative care consultant, but want to thoroughly investigate all options, so I can have to peace of mind, of knowing I'm making the most informed decision possible. Realistically, being a NJ resident, refusing treatment is my only legal option, to hasten my own death. The palliative consultant I've been speaking with seems confident, that I would be able to receive hospice care (to help provide comfort) and that death by starvation/ dehydration would be relatively comfortable, and peaceful for me. <br />
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In order for me to get hospice care, my doctor would need to diagnose me as being terminal. We have already discussed this. Once I decide to refuse food/water, I would technically be considered terminal. In just so happens that a man I knew from rehab (who was injured in a motorcycle accident, and sustained a similar injury) who chose to exercise his right to refuse food/water, about a year after our accidents, and died "peacefully" surrounded by family, and the support of hospice. Although it's possible, my doctors and case manager are hesitant. They are both requiring I have a psychiatric evaluation done. I need to be declared mentally competent, before they are willing to give me the terminal diagnosis. I've been in close contact with my lawyer, throughout my fact finding process. I also created a living will, appointing my sisters as health care proxies and created a DNR order. I realize the intricacies and the legal implications, that my decision to refuse food/water would have. I'm confident, that if/when I have had enough of suffering, and have reached my limit, that this is my only alternative, and that it will successfully result in my death. <br />
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I know if/when I decide to do this, it will be extremely difficult for my loved ones to witness. I'm trying to do as much fact finding as possible, in hopes of subsiding my own fears, and providing some sort of comfort to them. Death by starvation/dehydration, is my only realistic option, if I stay living in NJ. I've read many articles about this topic, and am frustrated by the strong contrast in the information I've found. Half describe, a rather peaceful, euphoric, slipping away, while the other half tell horror stories of week long, painful, drawn out deaths. Of everything I've read, they almost all discuss very old, very ill people. I'm young (30) and "relatively healthy" (I find that description humorous, given my total lack of control, or sensation of 85% of my body, and total reliance on people, medications & treatments). God, religion, and philosophy aside, I feel like refusing help, would be allowing nature to run it's course. Naturally, I'd prefer to be miraculously cured, or at the very least to be given the right to die with dignity, but my reality is most likely I won't have either option. <br />
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I feel like I'm a prisoner, within my own flesh, and am being kept live, by unnatural means. This debate boils down to the issue of quality of life. No matter how you slice it, my paralysis, and my physiology have sentenced me to having a very low quality of life. I feel strongly that if I did live in Oregon, my case should qualify for DWD. I'm curious to see what they write back. I know for a fact that people in my similar condition have applied to Dignitas, in Switzerland, and have been granted the right to die. I wish the United States was as open minded, and compassionate as the Swiss government. If I were Swedish, I would've certainly ended my own suffering at least a year ago. Despite having loving friends, and family, I'm at a point where every day I'm alive has come to feel like a punishment. <br />
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- Posted using BlogPress from my iPadChrissyhttp://www.blogger.com/profile/00069146517819619339noreply@blogger.com5tag:blogger.com,1999:blog-9073307022730595940.post-16976819807373759412011-05-31T01:00:00.004-04:002011-05-31T13:33:37.234-04:00"How To Die In Oregon"I just watched the HBO documentary, "How To Die In Oregon." It is a film about the debate, over whether or not people in the United States should have the right to "die with dignity," through physician assisted deaths. The documentary crew follows the lives, and deaths of several individuals, and their families. It presents clear arguments for why the right should be given to every citizen, and gives a very intimate view into the lives, and decision making process of the people involved, and what the process is like, in the state of Oregon. It also discusses opposing views, and the struggle involved, in getting legislation, like that in Oregon, passed in Washington. <br />
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One of the people the documentary follows, is a woman named Nancy. Nancy's husband had passed away, from cancer in his brain and spinal cord. At the time he was diagnosed with the illness (around 2006 I think), they were both Washington state residents. There was not much that doctors could do for him, in terms of treatment, and his prognosis was very grave. The disease progressed rapidly, and he lost his ability to care for himself. He suffered horribly, both physically and mentally, due to his degenerative condition, and his loss of freedom, and independence. He hated needing to be cared or, and wanted a peaceful, dignified death. At the time however, physician assisted suicide was illegal in his home state. He inquired about moving to Oregon, because he knew it was legal there, but his doctors told him he wouldn't be alive long enough to be able to establish residency there, or be able to give himself the lethal dose of medicine. He resigned himself to staying in his state. His wife Nancy described his final days being filled with pain, and suffering. One of his dying wishes, to her, was to work towards making physician assisted death legal in Washington, so that others wouldn't have to suffer the same way.<br />
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Nancy worked tirelessly, volunteering to speak, giving interviews, and making phone calls, to share her husband's story with the public, and to help raise awareness, and support, for the "Death With Dignity Act," which eventually passed, and was instituted in Washington, in 2008. During one of the many speaking engagements the documentary chronicles, the interviewer asked Nancy something to the effect of, "Death with dignity, the other side would call it assisted suicide. Is it assisted suicide?" She replied, "No. It's offense to me, to call it a suicide. Suicide is something someone does, who is otherwise physically healthy, and has their life ahead of them, but is clinically depressed and does not want to live." In another segment, she explains to a crowd of people, that although she and her husband were both raised Catholic, he (and obviously she agrees) didn't think it was right for the government, or any religious leader, to dictate how much someone should have to suffer. I agree with her opinions, whole heartedly.<br />
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The documentary discusses the Hippocratic oath, that doctors take, to "do no harm," and presents arguments from both sides. The film is clearly "pro" euthanasia rights, however it does offer examples, and give and take dialogue, from both sides of the issue. Some of the opponents to physician assisted death, claim that enacting such laws, is essentially giving the government the power to classify who is "fit" to live, versus those whose care might seem otherwise burdensome, or costly. I think this line of thinking is completely misguided. No one is saying "everyone with such, and such diagnosis, should be euthanized." <br />
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Giving citizens a dignified alternative, to assured suffering, has nothing to do with placing judgement on individuals. Everyone should have the right to determine what he/she considers to be a worthwhile life. Not everyone with a terminal diagnosis would choose to cut their life short. Not everyone that is disabled finds being dependent on others as painful, humiliating, or degrading. Everyone has their own unique threshold for suffering, and what he/she might classify as a life worth living. The point is, those people who do have a terminal illness, or incurable chronic illness, should have the right to determine when they've suffered enough. We as society, as loving, compassionate citizens, should recognize that in some cases, there are no medical answers or relief to suffering, but death itself. We should not demonize people for not wanting to suffer, or doctors for wanting to help ease someone's suffering. <br />
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If doctors have no methods to ease someone's physical illness, and that person is guaranteed to have a future filled with crippling limitations, lack of independence and/or physical suffering, than in my opinion, it is DOING HARM, not to offer a peaceful alternative. It is not right to say, you must suffer, because we can't help you. If death is a certainty, why prolong the suffering, and poor quality of life? <br />
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The documentary shows a man named Randy, dying from prostate cancer. In the film, he talks about his outrage over receiving a denial letter for more chemotherapy. Randy had already had several doses, but the treatments had been ineffective. He was too poor to pay for the treatments out of pocket, and the state of Oregon was refusing to pay for more treatments, because based on his diagnosis they felt that further treatments would only be futile (aka a waste of tax payer money), and were only offering him palliative, or "comfort care." He showed the rejection letter, which outlined the comfort care measures, that he COULD qualify for, given his condition. In the list, was the option of physician assisted death. He was completely irate, accusing Oregon of "putting a price on his life", and felt as though he was being pressured into dying. After going public with his story, the state agreed to pay for more radiation treatments. Despite treatment, he died a month later.<br />
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Giving people options, is totally different than imposing something on people. I don't think Oregon was wrong for denying Randy treatment. Some cases are lost causes. I receive all my medical benefits through the government, (Medicare and Medicaid) and believe whole heartedly that the government has the right to approve, or deny treatment, if they have clear evidence that it is unnecessary. As it is, there is a ton of price gauging, abuse of the system, and wasted money. <br />
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A perfect example, in my life, is receiving physical therapy. Due to my injury (C4/C5 complete), I was left completely paralyzed, with no hope of recovering any sensation, or functional ability, below my injury level. Directly after my accident, I received three months of inpatient acute, physical and occupational rehabilitation, and then six months of outpatient subacute rehab. For the first year and a half, after my accident I lived in and out of the hospital, and nursing facilities. During my stay in the nursing home, I received PT/OT five days a week (about a half hour of range of motion stretches, and exercises, done with the assistance of a physical therapist). Once I moved out, into my own apartment, the state paid to have a PT/OT therapist come to my home and teach my aides how to do range of motion exercises. I have been living here for over four years, and have only had PT/OT come to my home twice. The government will not approve me for outpatient PT/OT, because they feel, based on my diagnosis, anyone can be trained to do simple range of motion exercise with me. My prognosis, does not include "getting better," or regaining mobility, therefore they are justified in not wanting to pay for services that would be a waste of time and money. It doesn't make me angry. It makes sense. <br />
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I WISH I had a peaceful alternative to end this life. I don't think Oregon officials were wrong for denying the man in the film treatment. Clearly, he was terminally ill. Offering him the OPTION of a physician assisted death, was just that; an option. He had every right, not to exercise his right to die. In his opinion, his life was worth fighting for. That's all well and good, but there are cases where treatment is futile. If the tax payers are footing the bill, the government has the right to say whether or not they are going to pay. If you can afford it, and feel extra treatments are worth the cost,and risk, than more power to you. No one should tell you how you spend your own money (taxes & benefits aside). Just as, no one should force suffering upon others. <br />
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I HATE the life that my paralysis has forced onto me. I do not think it's right, or humane, to force me to live this way. If I lived in Oregon, or Washington, I would most certainly exercise the right to die with dignity. I'm not sure if I'd qualify, because I can't technically administer the medicine to myself. I'm a little fuzzy on the law, even after watching the film. They clearly point out that such legislation is feasible, because the patient is giving themselves the medicine, versus a doctor giving a lethal injection. However, everyone in the film, clearly had other people prepare the mixture, and help them. All they had to do was physically be able to ingest the concoction, by mouth. I could do that, but am unsure if my situation would be approved. <br />
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Most of society, and my loved ones don't like to admit the fact that paralysis (at high, complete levels- such as mine) is no different than a terminal illness. I have absolutely no means of self sufficiency. I am FORCED into accepting help for EVERY aspect of normal, daily life: to eat, go to the bathroom, dress, bathe, etc. I have two options: accept help and prolong my life, and therefore my own suffering, or reject help, and suffer a long drawn out, painful death. That is an incredibly harsh, cruel position to be in. <br />
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I'm not saying everyone with a spinal cord injury, or paralysis should want to die, or that they should be euthanized. All I'm saying is that each case should be judged based on the individual, and his/her own definition of what is a quality life. There should be an alternative, peaceful way to end someone's suffering. The choice, and decision to exercise that option, should be left to the individual. Not everyone will choose to die.<br />
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I for one, would welcome a peaceful option. For me, being completely paralyzed has been hell on earth. I absolutely detest needing help, and having no privacy. My physiology, (having IBS) has complicated my situation, and creates a lot of pain, and discomfort. I'm forced into taking dozens of pills, and into enduring horrible treatments (like bowel program-where a nurse needs to manually stimulate my body into evacuating stool), that create as much discomfort as they alleviate, if not more. There is no cure in sight for me, and very little that doctors can do to get rid of the autonomic dysreflexia, I deal with on a daily basis. My tolerance for sitting is poor, and I'm left practically bed bound. I am literally a prisoner within my own body. Right now, my only means of ending my suffering, is to reject the help that is given to me every day. Rejecting help will ensure my death 100%, because I can not feed myself, or get something to drink, without assistance. I can not go to the bathroom, or clean myself. Without help, my death will be assured, in only a matter of time.<br />
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In other words, my only option of ending my suffering (which in and of itself is a certainty, given my body, and my condition) is to slowly starve myself to death, or hope to die from untreated infection. Both "options" will result in my death, but will most likely be very painful, and drawn out, and incredibly hard for my loved ones to witness. For me, the best "help" for me, would be a dignified death. I hate that I am so trapped, and so limited by the law. It pisses me off, that religious "morals" and belief systems are imposed on me, and force me to suffer. My life has come to a point, where living equates to suffering. The scale has tipped, irreversibly, to being a life of overwhelming suffering, versus overall good. I truly wish I had the right to die peacefully, and quickly. I'd take that option in a heartbeat. <br />
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The documentary also follows a woman, named Cody, who was dying from cancer in her liver. Throughout the film, it shows her with her family, and each of their perspective's about her choice to exercise her right to die. For a little while, she had a period of feeling good, and had outlived her prognosis. She knew that she had the pills, waiting for her, but she chose life. She explained that she knew she didn't HAVE to ever take the pills, if she didn't want to, but that she drew peace and comfort from knowing, that she could spare herself from eventual suffering. She knew she was going to die, either way, but she didn't want to let her illness bring her to the point where she could no longer care for herself. <br />
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Naturally, Cody's family was sad, that she was going to die, but they were also very understanding, and supportive of her decision to hasten her own death. She involved them in her thought process, and clearly outlined what SHE considered to be a quality life, and how far she was WILLING to continue to suffer. Thanks to her having the option to die with dignity, she and her loved ones were able to prepare for death, together. They were able to enjoy her last days together, and say their goodbyes to one another, while she was still relatively able to care for herself, and was able to die with pride, and grace. She was able to spare herself the suffering, of added pain and the humiliation, of needing to be cared for (I can relate to her feelings), and spare her family the cost, and the physical & emotional burdens of having to watch her suffer and have to care for her. <br />
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Some people can tolerate more pain than others. Some people don't mind being dependent. Some people aren't bothered by vanities, modesty, or pride. Everyone is different. Every case is unique. For those people, whose death is inevitable, without medical intervention, or for those of people living with incurable, painful conditions, there should be a humane alternative, to forced suffering. Giving people the right to die, is not the same as killing people. The choice should remain with the individual that is faced with the suffering. Suffering shouldn't be imposed, or expected, just because there isn't a cure, or viable treatment. We treat our pets more humanely, than we treat our fellow man. I agree with the right to die with dignity, and wish more people would open their eyes, hearts and minds. I wish more states would free their citizens from the oppression of religious beliefs, over law, and give citizens the right to decide how much/little suffering they are willing to endure, and give doctors the right to uphold their oaths, to help ease suffering; even when life itself is suffering. <br />
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- Posted using BlogPress from my iPadChrissyhttp://www.blogger.com/profile/00069146517819619339noreply@blogger.com4tag:blogger.com,1999:blog-9073307022730595940.post-74409544203846529632011-05-17T00:45:00.003-04:002011-05-17T02:50:22.396-04:00"A Gradual Awakening"I just finished reading a book by Stephen Levine, called "A Gradual Awakening." It is a book about meditation, and philosophy, based on Theravada, and Zen Buddhism. It was recommended to me, by someone who reads my blogs, and is a fellow member of the "Care Cure" online community I belong to. Curiously enough, his name also happens to be Stephen, and he has been living with paralysis since the early 80's (paraplegic- due to an arteriovenous malformation). He and I correspond, from time to time, and he thought the book might offer me some insight, and comfort, with my struggles, trying to cope with life with paralysis. Luckily, it was available in e-book format, which made it easy to read (I buy books through iBooks & the Kindle app, on my iPad- it's much more convenient than reading traditional books, because I can easily switch between tasks, look up definitions, highlight important passages, and take notes). <br />
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I've read many books on meditation, since my accident, so I was already familiar with some of the book's concepts, and practical advice. My grandpa (my stepmom's dad) has been into meditation, mysticism and dream psychology (he owns an impressive collection of books by Carl Jung), for decades, and has hundreds of books in his library (mostly religious texts [of various religions], spiritual, philosophical, and psychological in basis/theory). He has practiced meditation (and prayer- his approach is from a Christian perspective) and kept dream journals, since he was in his forties. He and I spent quite a lot of time together, as I was growing up, and over the years he told me about his studies. I always viewed his studies, as an interested sceptic. I was always open to listen, and to read through books he gave me (more so, since my accident- before I was often busy, and did, or could not make time). <br />
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I have always found religion, philosophy, and psychology to be fascinating subjects, worth investigating, pondering, debating, and questioning. Eastern philosophy, in particular has always been appealing to me, and something I have found myself drawn to, time and again, throughout my life. My fascination, for Asian art, philosophy, and culture, started with my discovery of anime (with Sailor Moon- sophomore year of high school- in 1995), and blossomed into a genuine love, and passion to study many facets of Japanese, art and culture, in particular. <br />
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In college, I took an "Art of Japan" course, as one of my art history requirements. It was through that course, that I began a serious study of Buddhist art, and philosophy. As with every art history course, I've ever taken, religion played an integral role, in the inspiration, and creation, of much of the artwork I studied. I can remember having to study, and being able to identify hundreds of varying Buddhist statues, and paintings. I learned how to "read" the symbology present (posture, hair knots, drooping earlobes, lotus flowers, etc.) in varying types, and styles of Buddhist art, and about the principles, and philosophy behind such things as, Zen ink paintings, sand mandalas, rock gardens, and tea ceremonies. I especially fell in love with Ukiyo-e wood cut prints, and can remember spending hours at the M.E.T. looking at them, and using their library to write a paper about Ukiyo-e's influence on the post impressionistic movement. <br />
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In the years right before my accident, I used to go into NYC monthly. I would sometimes spend all day, getting lost in the Asian, and Egyptian wings of the M.E.T., looking at the artwork, and making sketches. I would take trips down to Chinatown, and spend all day (in the summer and on weekends) browsing in, and out of tea shops, and buying all sorts of Asian style accessories, clothes, figurines and nick knacks. Over the years, I've amassed quite a collection of both traditional and contemporary Asian books, and art. Not to mention, my over the top collection, of hundreds of anime DVDs and Blue-ray disks (I'm an otaku, in every sense of the word). To this day, my apartment is filled with Buddhist iconography, and Asian artwork, and inspiration. <br />
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It was no surprise to me, that I'd enjoy, or be drawn towards the teachings, in "A Gradual Awakening." Like I said, it's not the first book I've read on how to meditate. Most books I've read in the past have been more well rounded, in terms of offering varying religious and non-religious approaches, and offering more direct, step by step guided meditations, or contrarily, vague techniques or generic mantras. The difference in this book, is that the author focuses specifically on the teachings of Buddah himself, and offers more specific examples Zen philosophy, with a few guided, purpose based meditations. Even if you've never read about Buddhism, and/or meditation, it is simple to understand, and pretty straightforward.<br />
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Naturally, "knowing" and "doing" are two different things. While, Levine's writing style makes the concepts understandable (and approachable), it is a whole other ball of wax, to be able to apply the content, and practice the principles he describes. The book is definitely a good jumping point, to begin reflection, and offers a lot of rational, practical sense, that make the reader (namely me) want to try the theories out for himself/herself, and that can be applied to, and compliment various, existing religious beliefs, or mindsets. <br />
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In the book, Levine's (based on Buddah's teaching) overriding theme, is that the root of all suffering, is based on our (collectively) inability to be at one with the present moment. He says it is our attachment to our preconceived notion of "who" we are (as individuals), "what" WE think we should be doing, and/or "where" we should be, that interferes with our ability to be happy, and/or peaceful with our reality. He states that in order to be truly happy, to be whole, and fulfilled, we must begin by letting go of the personal "I." <br />
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According to Levine, we are all part of a bigger whole, and that through meditation, we can start to return to this natural state of feeling complete. He asserts that everyone has the innate ability to access this grander sense of truth, by honing one's concentration, through mindful meditation, and gradually awakening. He says everyone must start by focusing on the mind, as an observer, to watch thoughts, as they pass through the mind, and to begin to recognize the constant change, and flow, that is present, from moment, to moment. He warns, not to let one's self get pulled in, or get attached to any one thought, but to detach and let each moment unfold. <br />
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He briefly explains the concept of karma, as being "the perfect outcome of previous input." In other words, you sow what you reap. So, from a Buddhist standpoint, my current situation (being paralyzed) is because of some past action. From a rational, logical standpoint, anyone would agree, that my diving into a shallow pool, head first, resulted in me breaking my neck, and thus left me paralyzed. However, looking at my life, from the viewpoint of the larger picture, and the seemingly unjust nature, of how drastically one small action, has caused me so much loss, and suffering, the logical cause and effect explanation, does not seem comforting, and lacks the deeper meaning of "Why?" Levine says, that this is where karma comes into play. <br />
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From the Buddhist perspective, the karma I have in this life, can (and has been) effected by this life, as well as by actions in past lives. So, even though it might seem unfair, or unjust, for someone like me (a relatively, honest, kind, hardworking person) to have to suffer so much, for such a small mistake, it is the result of past mistakes, and it is part of a much, much bigger picture. Levine explains, like a circle, it is impossible to determine where one cause, or effect begins, or ends. He doesn't go much into reincarnation specifically, but implies, that whatever desires we have, when we die, or feelings left, unfulfilled, those grasping qualities create karma, and propel us (condition, and effect us) into our next life. Luckily, according to Levine, we each have the potential to reach "enlightenment" and stop the karmic cycle. He offers Buddah, and Jesus, as two examples of individuals who were able to attain enlightenment, through their loving, selfless, detachment, and return to their place, within the universal wholeness. <br />
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So, in my case, it makes perfect sense, to say that most (if not all) my suffering is a result of my attachments to my perceived image of myself. I feel sad, angry, and empty, because I am clinging onto the past (aka- an illusionary version on "myself") and onto an idealistic future self. Levine would assert, I am in pain, because I am not living life, in the present moment. According to him, in order for me (everyone) to find peace, I need to learn to love myself, forgive myself, practice loving kindness towards others and to live only in the present moment. He says, in order to be whole, we must let go of our egos; we must accept the present moment.<br />
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While I'll admit, the dichotomy between my "ideal" present, and my "actual" present does account for a tremendous amount of suffering, it is easier said than done, to abandon every like, dislike, preference, preconceived notion, desire, wish, dream, hope, and aspiration I've ever had, and what I believe (falsely- according to Buddah) to have been "me" as being me. From an analytically viewpoint, it makes perfect sense, that if I could let go of everything I had, and give up the dreams, and goals I had, for my future, I would be a more content person. In the book, Levine offers guided meditations, to help the reader work through the process of how to live life in the present, and ways to let go of "self."<br />
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I definitely agree with A LOT of what the book discusses, from a logical perspective. That might sound strange, given the fact the author is proposing radical ideas on being completely selfless, to the point, where the reader must choose to accept concepts of multiple lifetimes, collective consciousness, and universal oneness. I'm not sure if I'm sold on the idea of karma, to the extent of believing in past lives, or even that the present moment in my life (as I write this) as being perfect and correct, but it does make COMMON, practical sense that clinging to ideals, memories, or even hopes, IS a recipe for suffering. One undeniable truth, throughout this book, is that life changes. From the birth of this moment, to the death of the past moment, life is a continuous flow of change, of beginnings and endings, of causes and effects. The more you resist change, and fight, or try to escape the present reality, the more you hurt yourself. That is basic, powerful, truth. <br />
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While I continue to try and let go of my past, accept my reality, and work on being the best person I can be, in the given moment, it is extremely hard. Change, while difficult for everyone, is inescapable. However, most people have the luxury of being able to adapt to change gradually, as it slowly unfolds. My reality, was brutally, abruptly turned upside down, literally overnight. I had no choice but to let go (in a physical sense) of most of my acquired skills, and abilities, in the matter of minutes, because they were forcefully stolen from me, by my paralysis. Contrarily, many new, painful, realities were thrust upon me, like having to accept help (for everything), having to expose myself, needing bowel program, a catheter, and medications. Paralysis did not afford me any time, to ease into my new life, or grant me a transition period. I went from being one person, with one life, to becoming a new person, with a new life, overnight. To make matters more difficult, I have EVERY memory of my old life, and the shadow of the old "me" looming over me. <br />
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In a figurative (and literal) sense, paralysis has forced me to consciously experience my own death, and rebirth. While, it is an interesting theory, to explain this present life (my life post spinal cord injury), and my very real physical pain, and discomfort, as a product of past karma, it is not comforting. Even if I accepted the principle of karma as truth, it still doesn't give me the explanation of what actions I did, to create the karma I'm experiencing, right now. I suppose, Levine (and perhaps Buddah) would say, my past actions, and even my current situation are irrelevant, except for the opportunity my present situation affords me to grow, and learn, and of how I choose to act, from this moment forward. <br />
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The book is clearly written with the average person in mind, and not aimed at the severely disabled, or terminally ill people. He touches briefly, on dealing with physical pain, but focuses primarily on the psychological pain, and negative feelings, and attitudes, that hold people back. It has certainly given me some food for thought, and some concrete strategies, and techniques, for beginning to work on my emotional pain, and psychological wellbeing, but leaves me with many questions, about how to deal with the physical limitations, physical pain, and chronic illness that are also part of my present reality. Even if I am able to let go, of everything, including my ego, my body can't escape the physical limitations, and discomfort. <br />
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I suppose, the hope, or goal, would be that this pain, and physical suffering is only temporary, and ultimately, by becoming enlightened, I could potentially ensure that this lifetime is the last time I have to experience it. The thought of letting go of all desires, seems like an impossibility, and thus dooming me, to forever repeat my mistakes; never feeling satisfied. In this regard, the Christian, Jewish, and Muslim promise of an eternal heaven, seems much, much more appealing. Although the thought at a second chance, to experience the things I can't/couldn't in this life, sounds tempting, the thought of having to experience the drastic, abrupt change that I have had to endure, in this lifetime, has been intense enough to never, ever want to repeat it.<br />
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I'm curious to read another book Levine wrote, entitled "Healing Into Life and Death," which focuses more on situations of chronic, and terminal illness. I'll be sure to write a review, if/when I finish it. <br />
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- Posted using BlogPress from my iPadChrissyhttp://www.blogger.com/profile/00069146517819619339noreply@blogger.com4tag:blogger.com,1999:blog-9073307022730595940.post-25147100047955974302011-05-09T16:48:00.002-04:002011-05-09T16:50:22.802-04:00Meeting With Fr. DougWell, I just met with Fr. Doug. He was very nice, and younger than I imagined. Most of the priests I knew growing up, were easily old enough to be my grandfather, or great great grandfather. We talked for about an hour and a half. I explained pretty much everything I've been thinking, and going through; lots and lots of tears. I showed him some of my still life paintings, I had laying around the apartment and gave him my card, to check out my website.<br />
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He said he could see a definite reason why God wanted me here, to use my gifts, to help others. I brought up the fact, that I feel I have been generous, and giving, but wonder how long I'm meant to keep living for the sake of others. I said, it's unfair, to hold me to the standard of Jesus, when Jesus had a clear knowledge, of his purpose, about his death, and about his resurrection. He said that's true, but that life isn't always fair. I explained that I don't blame God, for my accident, because I feel it is a product of my own freewill. He agreed, and said, although God doesn't create suffering, he can make good things happen, despite of it. <br />
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I understand, that I've been blessed with gifts, despite my severe disabilities. My gifts, of writing, and painting have helped me to cope, and teach others, about paralysis. However, the daily bouts of autonomic dysreflexia, and the grueling treatments, and degrading, embarrassing nature, of being totally dependent, makes living this way, seem so overwhelming, and often overshadows, the few positives in my life. I am thankful, to be able to express my feelings, but sometimes feel like my mind itself, is my own worst enemy. Being so trapped, with nothing but my thoughts, is often a punishment, within itself, because I'm constantly remembering what I had, what I can't have, what I miss, and what I want. The disparity between my old life, and my reality, is constantly weighing down on me, and makes it hard to be satisfied with what I've been left with.<br />
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He said I seemed to be much harder on myself, than others, and said I needed to find a way to forgive myself, for the accident. He said I had to start loving myself. I have heard those words many times, but am at a loss, at how to begin to do that. He said we're often much nicer to others, than we are to ourselves, and in my case, that's certainly true. He said God, is also more forgiving than I am, which I'm hoping is true. I know I didn't intend to hurt myself, but it was MY poor judgment, and MY action, that ultimately resulted in my injury. In many ways, I feel like a murder. I feel like the person I was, died that day, and I've been grieving for her, ever since. Paralysis has stolen almost every aspect of my old life; a life a loved.<br />
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I have lost my freedom to care for myself, my privacy, my dignity, my hopes, my dreams, my career, and the life I had built for myself. In many, many ways I lost myself. I miss the old Christina. I miss living my old life. I have no to blame, for the life paralysis had given me, but myself. How do you forgive someone that has stolen everything you loved, and held dear? How do you forgive someone that has robbed you of your health, and in turn, sentenced you, to a life a suffering? How do you forgive someone, that has robbed you of your potential, and your dreams, for the future, by placing extreme obstacles, and limitations upon you? I'm not sure if I CAN forgive myself. <br />
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Talking with Fr. Doug, did help provide me comfort, in that he said I had the right, to refuse extreme measures, like a tracheotomy, colostomy, or vent. Although, deep down, he's just a man, I felt relieved of the heavy burden, of knowing he (as a Catholic priest) recognized, that some situations are TOO much, and that God would understand, not wanting to preserve "life" to ANY and ALL extent necessary. Ever since those first few weeks, in ICU, my worst fear, has been ever having to be hooked up to a vent, again. I have a hard enough time, dealing with being reliant on people, I don't want to ever be reliant on machines again.<br />
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Fr. Doug said he thought a lot of my feelings, and dark thoughts are just depression, and suggested I reevaluate my medications. I said, I'd be open to trying. I already have tried a few. I had been taking Effexor, up until last year, and felt like it was no longer working. I asked my doctor, if I could try something different, and I started Pristiq. I've been taking it for at least six months. In the past six months, I've also added Remeron, and Xanax at night (both have been increased in doses a couple of times), to help with my insomnia. That said, I'm as down as ever, and in a very dark place. <br />
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I get a little annoyed, when people just write my feelings off as depressed, because I feel the true root of my sadness, stems directly from my paralysis. I'm not saying I'm not depressed, because I clearly am. I'm just saying that, no matter what medication I take, I will ALWAYS have a certain degree of depression. I pointed out, that anti-depressants, are not going to take away the key problems, that are plaguing me: the daily bouts of AD, my physical limitations, bowel program, or my catheter. I suppose, the right medication COULD make dealing with these things more bearable, but on a whole, I honestly can't envision ever being happy, or satisfied with living the way paralysis forces me to live.<br />
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After our long talk, Fr. Doug performed the anointing of sick ritual, and we said the "Our Father" together. I hope God was listening, and can offer me some relief, one way, or the other. In the meantime, I'll take Fr. Doug's advice, and talk to my doctor, about possibly trying to change my medications. At this point, I feel I have nothing to lose. I don't want to seem unreasonable, or unwilling to take suggestions. If I didn't want help, I wouldn't bother asking. I just want some peace, and to feel better, for a change. I do wish God would just cure me, or take me. I hate feeling stuck, in constant limbo. <br />
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Our conversation, hasn't really changed my mind, about not wanting antibiotics. I feel like, if God truly does want me alive, God certainly has the power to keep me alive, despite that decision. For now, I'm willing to experiment, and see if new meds, can offer any relief. I will also continue to pray, meditate, read, and search, to try and strengthen my faith. I will continue to be open, and honest with my friends, and family, and try to enjoy each day, the best I can. I'm really trying my best. I don't know what more I can do. <br />
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- Posted using BlogPress from my iPadChrissyhttp://www.blogger.com/profile/00069146517819619339noreply@blogger.com10tag:blogger.com,1999:blog-9073307022730595940.post-49318125877914373202011-05-06T23:48:00.005-04:002011-05-06T23:59:26.503-04:00The Suicide TouristI just watched a documentary, called "The Suicide Tourist." It's an very moving, powerful, documentary, chronicling the final days, and eventual suicide, Craig Ewert. The documentary takes place in Europe, and gives an extremely intimate view, of Craig's life, and death. It is a highly thought provoking piece, that raises many questions, about quality of life, and the right to die. Craig himself, is very articulate, and poses some strong arguments, for his decision, and his opinions, on living, suffering, and on dying. I think it offers an exceptional example of why people, OUGHT to have the right to "die with dignity" and demonstrates good arguments, for why euthanasia should be legal, here in the USA. On a whole, the documentary is very tastefully done, and an incredibly brave, and generous contribution to society, on the part of Craig, his wife, and his children. If I could, I would like to thank Craig, and his family, for their willingness to share his story. I have a high respect for his loved ones, in that they supported his difficult decision, and stood by his side (particularly his wife), while he carried out his wishes. <br />
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Craig and his wife, both American citizens, had moved to Europe, before he got sick. They had two grown children, and decided they wanted to travel, and live abroad. Craig, who had been a professor of computer science, got a teaching job in England, and he and his wife relocated. His wife started started studying for a Phd, in law, and they were enjoying living their new life together. Everything changed, when Craig started feeling weak, and ultimately was given the ALS (Lou Gehrig's disease) diagnosis, and told his best case scenario, was two to five years left, to live. Around six months, after being diagnosed with ALS , and his rapid deterioration in health, Craig decided he wanted to end his life.<br />
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He started doing research, and was disappointed to discover that physician assisted suicide, was only legal in three states (I know of Oregon & Washington). He became frustrated by the fact, that people expected him to just accept his fate, and feared more than anything, what life would be like, once he could no longer speak, or communicate. He feared becoming a prisoner, in his own body (which I feel I am- even though I can communicate- and know what it's like to be completely paralyzed, without speech, from my time spent hooked up to a ventilator) and doubted his life, or death would be as "peaceful" as third party accounts described. He brought up an excellent point, that just because a person is "still," to the casual observer, it doesn't mean that the person is at peace. Being trapped, with no way to communicate, and stuck with nothing but your thoughts, and hauntingly painful memories, is anything, but peaceful. I know from experience. It is hell, and pure torture. <br />
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Wanting to prevent further suffering, and speed up the process, of his inevitable death, Craig continued his search for a legal way to end his life, and discussed his viewpoint, feelings and fears, with his wife and children. Realizing that he was suffering, and death was fast approaching, his family respected his wishes, and supported him, in carrying them out. He ultimately found out about Dignitas, a clinic in Switzerland, which offers assisted suicide services, to Swiss citizens, and foreigners alike. Knowing he had to be able to swallow the lethal dose of sodium pentobarbital himself, and that his window of opportunity was closing (due to his degenerative disease, and the unpredictable nature of the illness), he set up his appointment, and was accepted, to receive their services. <br />
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During the filming of his four, final days, Craig talked about his reasoning behind wanting to commit suicide, and his opinions on it being illegal, throughout the UK, and much of the US. He very poignantly expressed the fact that, many people throw the issue of God, into the matter, as a leading factor, for why there isn't more support, for assisted suicide, and how it is ironically unfair, that "playing God" is seemingly only a matter of contention, when it involves ending a life (and suffering), versus saving it. He pointed out the glaringly obvious distinction, where doctors "play God," by saving newborn babies (through extreme medical intervention) and keep people alive, unnaturally long lifespans, through medicine, and machines, but that it's "ok" to "play God," when it preserves life. He pointed out the fact, that his respirator, had been "playing God," keeping him alive, and couldn't understand why it was only acceptable, to intervene in extending life, but unacceptable to end life, even when there is no hope of cure, and definite suffering present. I too, do not understand, the rationale, behind this unjust form of thinking. <br />
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The documentary discusses Swiss law, and says (which I've read in many articles) that because of the fact that euthanasia is illegal, in the UK, and most of the US, the Swiss government has seen a huge influx, in "suicide tourism," and that outside countries (namely the US & UK) have been pressuring Switzerland to reject foreign petitions, to die within their country. This scrutiny has made it difficult, for clinics like Dignitas, to accept any, but the most extreme, and most desperate of cases. Luckily for Craig, he met Dignitas' criteria. <br />
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I think it's a shame that people like Craig (and myself) are forced into living with incurable, extreme disabilities, essentially against our will. I can completely relate, to his suffering, his viewpoint on being forced into dependence, and his fears of feeling trapped, and hopeless. It is a shame, that anyone should have to fly half way around the world, and petition a foreign country, to die a dignified death. I think it is cruel, that our society (and the UK) would rather watch people suffer, who would otherwise be dead, if it were not for medical intervention, than to allow us, to choose what we can tolerate, and what we deem, is a life worth living. Why is it so wrong, to offer a peaceful death, to someone who has no means of living, on their own, to whom medical science can offer no cure, and who is, in his/her own opinion experiencing suffering? It makes me angry, that people like me and Craig have to leave the country, or slowly starve ourselves to death, or slowly die from infection, rather than be given a HUMANE, easy alternative, because other people (who have no clue what it's like to be in our shoes) think it's "right," or "wrong." <br />
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I know the pain, and loss, that Craig was faced with, and why he decided to end his life. I know, very well, the terror of being completely reliant on others, and the heaviness, of feeling like a burden. I too, know the sadness, and disappointment, of having to express feelings of wanting die, to the people I love, and the pain and guilt, that comes along with deciding I want to give up on life. I know the shame, blame, and guilt, that society at large, and religion, bears down on the individual. It is a horrible situation to be in.<br />
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I know what it's like to look into the eyes, of the people I love, and tell them that I feel my life is no longer worth living. I'm living through that pain, right now, and know how hard it is to let go, even though every fiber of my being is exhausted, and wanting to give in, my conscious keeps reminding me, of the pain my death will cause, and I wish I knew a way to avoid hurting the people I love, while at the same time ending my own suffering. I know how horribly frustrating it is, to be a prisoner, within your body. I'm trapped, exactly like Craig, and I understand his desire to escape. <br />
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I applaud Craig, for his courage, and his family, for their selflessness, and compassion. I don't think it's wrong, to want to die peacefully, when death is inevitable, and medicine offers no hope, of alleviating a person's pain, and all the future holds, is a life full of suffering. I wish I had a peaceful option; a means of escaping this life, that didn't involve added suffering, and putting my loved ones through a long, painful process, of watching me slowly die, day by day. I wish everyone could watch "The Suicide Tourist", and gain some perspective, on the fact that, sometimes the most humane, compassionate thing to do, is to offer a peaceful death, and to let go, versus sentencing someone (that would otherwise be dead anyway) to a lifetime of suffering.<br />
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Video- <a href="http://video.pbs.org/video/1430431984"></a> http://video.pbs.org/video/1430431984<br />
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Information about ALS- <a href="http://www.alsa.org/about-als/what-is-als.html"></a><br />
http://www.alsa.org/about-als/what-is-als.html<br />
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- Posted using BlogPress from my iPadChrissyhttp://www.blogger.com/profile/00069146517819619339noreply@blogger.com2