As I mentioned in my last blog, I've been doing a lot of soul searching and actively seeking out answers to some tough questions. My state of mind is an ever changing battleground, where I find myself forever fighting to find reasons for why I'm suffering, and looking for motivation and purpose to keep moving forward. One of the biggest obstacles that makes living with paralysis such a struggle for me, is chronic illness and feeling physically sick. The near constant discomfort has left me feeling very worn down and has pushed me to examine my life very closely, and ask myself why I try so hard, despite my unhappiness, and if there are any solutions out there, and what all of my options are, regarding my life, as it is.
I recently discussed some of these questions with my doctor. He was kind of vague in his responses. He's a PA with a visiting physicians group. He sees me at home about once a month. Most of his patients are elderly. It gets frustrating at times (even when I go to the hospital) because most doctors (including mine) aren't specialized in dealing with spinal cord injuries. I feel like most of the time we're just playing a guessing game, trying to pin point why I'm feeling sick. Most of the time, I get told it's a UTI or possibly neurological. In other words, they don't really know for sure. Understandably, it's probably just as frustrating for them, because I can only tell them secondary symptoms (since I can't actually feel what's going on) like fever, chills, chest pressure, sweating, etc. Given the fact that I have a catheter, my urine specimens always come back positive for infection, so half the time I wonder if it's a UTI that's making me feel sick or something else. All we ever do is run tests, but never find anything concrete. Honestly, I don't know that a specialist could do much better. I'd just feel more confident if I had more access to doctors that had more experience dealing w/SCIs. The only place we really have in NJ for outpatient care is Kessler Rehab, which is an hour commute. It's just not worth going there, every time I feel sick.
Aside from the emotional trauma and dealing with an insane amount of loss, living with paralysis has been physically taxing as well. One of the biggest problems for me personally, is my ever diminishing tolerance for sitting in my chair. My ability to sit in my chair, be productive, go places (not that I'm often itching to go out) and do things, has gradually become more and more uncomfortable over the past couple of years. The discomfort and the chronic sickness has made it very hard for me to find joy in the things I used to. Ever since I had a bed sore (6cm wide and deep- at its worst- on my upper thigh, below my backside) back in '08 my tolerance for sitting just isn't the same. The first couple of years post accident I could comfortably be up in my chair for 8hrs a day, 7 days a week. Now, I get out of bed on bowel program days (which ends up being like 3 hours on a commode chair-for BP & my shower) and then spend the rest of the day in bed; sitting up in bed for an additional hour or so around dinner time. I try to get into my power chair on non BP days, but lately it all depends how I'm feeling. The thing is, I end up getting very uncomfortable in my chair after only sitting for a few hours. My symptoms vary, but it usually starts off with a clammy sensation, followed by weird tingling throughout my body, then further followed by a gradual pressure building up in my chest and/or abdomen. On top of that, I'm constantly dealing with leg spasms, phantom pain and tingling in my legs and feet. I end up asking my aides or family to check if my catheter is kinked, if my clothes are wrinkled, if Id had an episode of incontinence, or any other visible problem, and we almost always come up short.
I do periodically weight shift while I'm in my chair, and have only ever had two bedsores (one was on my elbow). Most of the time there's just no real rhyme or reason for why I start feeling symptomatic. The chest pressure gets really bad though. It feels like someone is filling me up with air and squeezing my sides all at the same time. I also start to get lethargic and feverish after about four hours of sitting. I've had various tests done to rule out serious heart or lung issues: blood works up, X-ray, CAT scan, sonogram & EKG. All of them came back fine. I take Prilosec OTC and have ruled out indigestion for the most part, because there's no obvious connection to meal times. I had a OBGYN exam to rule out anything on that end, nothing. Although, I have noticed a change in my cycle this last year, in the sense that around that week I feel worse than usual. During that week I'm usually achier, more tired and have more frequent fevers. All in all, it's been a vicious cycle, that has kept be bed bound most of the time. For whatever reason, the symptoms do subside a bit more when I'm lying down (not completely though). Knowing I'm going to feel uncomfortable makes me not want to bother getting up, which in turn lessens my tolerance for sitting up. It's a lose-lose situation. I'm just so tired of feeling nauseous, feverish, achy, and down right icky, 75% of the time. It's kind of like having the flu five days a week. It makes it very hard to be happy, or motivated, when you have the chills and feel discomfort.
I'm at my wits end. On one hand, I want to get up and be more productive. I end up feeling guilty and worthless for being in bed all the time. On the other hand, I legitimately feel sick, and lack the drive to do stuff and risk feeling worse. On BP days for example, I'm wiped by the time the nurse is gone, I'm showered and have eaten breakfast. Just sitting on the commode for three hours is taxing on my body, not to mention the constant stimulation the nurses have to do, to make me go to the bathroom. The whole process is both mentally and physically traumatic for me. It has also created hemorrhoids (how wonderful) that are directly irritated further by the entire process. I never had them before my accident, but I hear they are extremely painful. Although I can't feel the pain directly, it could be one of the contributing factors to my mystery symptoms and discomfort.
I end up chalking up a lot of my discomfort to autonomic dysreflexia, which is something many people with paralysis have to deal with. AD is the body's way of compensating for the fact that Ican't feel It is like nature's way of giving me a warning system. When there's something wrong, like my catheter being pulled, or an ingrown toenail, my body responds by elevating my blood pressure. The alleviation in blood pressure presents itself in different ways: chills, profuse sweating, muscle spams and throbbing headaches. If I start to feel symptomatic, I usually assume it's AD related and try to find the cause. If we do find a reason and fix the problem (such as repositioning me, or flushing the catheter) the symptoms subside almost immediately. Unfortunately, most of the time we don't find an obvious reason. So although I know my depression is a contributing factor to me being unmotivated and dissatisfied with my life, my reasons are not all in my head. My physical condition (aka-paralyzed) is the number one contributing factor to my depression, and my overall health and comfort has made it even harder to remain upbeat. Able bodied or not, no one likes being sick.
Having no real diagnosis or treatment for the chronic pressure, fevers (always low grade and always in the evening) and cold sweats makes me very frustrated and adds to my sense of hopelessness. As it is, I take over a dozen pills every day, and have the BP & catheter to contend with, all of which I absolutely hate. All of which, is unfortunately necessary to keep me alive, and relatively comfortable and healthy. The only problem is, it's obviously not working- at least not well enough. It's especially aggravating that I seem to be forever adding more pills and seeing few results. I take three different medication to help with depression, anxiety and insomnia (Pristiq, Remeron & Xanax). I take four different medications for my bowel & bladder related issues (Senekot, Colace, Detrol & Ditripan), on top of watching my diet. I watch my calorie intake and make sure to eat lots of fruits and/or veggies. Then there's the Prilosec, which is supposed to help with stomach issues and a multi-vitamin. It's bad enough being paralyzed, but feeling gross on top of that, just makes me want to curl up and sleep forever. It's like having a chronic illness, on top of a chronic condition. There's no cure in sight for my paralysis, and there's seemingly nothing to make me feel better. I wonder how many people with spinal cord injuries deal with similar problems. It's hard feeling like no one understands you and even harder feeling like there are no answers. I'm just stuck dealing with it; just like all the emotional pain.
Like I said, I've been feeling very down and tired of struggling so hard to cope with my situation, only to feel empty and sad. It's hard fighting for a life you hate living. That's why I started to seriously consider what it would mean to stop fighting. I mean, in terms of the physical and medical repercussions. It's not to say that I have already decided to stop trying. I'm literally just searching for answers. During these last five and a half years, few people have had any concrete answers to give me. There's no recipe for how to cope with having your life turned upside down over night, or how to deal with finding yourself complete stripped of yur independence. Everyone's situation and injury is different. The emotional scars and finding reasons to move forward have to be dealt with on your own terms. No one can say or do anything to make the emotional aspect of dealing with paralysis easier.
It's just infuriatingly frustrating when there's not any answers for the physical stuff. I get so angry sometimes. It seems so unfair that medical science has no cure; that they patched me up and sentenced me to live the life I have. It seems absurd and cruel to me at times, that my loved ones, doctors and nurses expect me to be happy, being paralyzed. It is not a high quality of life, no matter how you slice it; not to me. I feel I have the right to know all the options available to me, because at the end of the day, I'm the one living my life. I'm the one suffering, both physically and mentally. I'm the one that has to endure bowel programs, chronic aches, lack of privacy, cope with all of my memories and all of the loss. I never get a break from it. I never have the luxury of not thinking about it. I'm stuck, in every sense of the word.
I want to know what to expect if I were to say, enough is enough. What would happen if I stop having a bowel regime? What would that do, to a person in my condition? My doctor didn't really have an answer to that question. So I'm left wondering, who would have the answers? I'm not even sure who to ask, for some of my questions. That's why I've opened the subject up to general discussion. I figure there might be people out there who went through something similar with loved ones, or doctors, or nurses that have experience, working with people with paralysis and palliative care. My doctor thought I would qualify for hospice, if I decided to refuse nutrition, hydration and my treatments. He didn't know for sure. I'm wondering who would know. It's not as if I'm taking this matter lightly, and just saying I'm too sad, so I'm going to stop eating. I'm just curious to know exactly what my rights are and what to expect, from a medical perspective, if I chose not to sustain my life; if I decided to refuse help. In a way, I feel like everyone is tip-toeing around the answers, even if they know them, out of fear. It's as if people think the moment I have a few answers I'm going to die that very day. That's not the case. Surely, the thought of starving myself to death does not sound pleasant, and I'm in no rush to find out what it's like. I have looked into it though, as it is one of my only means of escape.
I've read up on the right to refuse nutrition and hydration. There is information based on eye witness accounts. For example, I read it's best not to intake any water at all, because it only prolongs the suffering. I read instead, you should just use a sponge to moisten the lips, to help alleviate the dryness, due to thirst and dehydration. I want answers, because if I really felt as though I absolutely had no will left to fight, I'd want to make my last days the most comfortable as possible. Refusing bowel program and what ever else, I'd decide to stop, would be careful decisions that I want to make based thinking things through and only ever as an absolute last resort.
I realize this might all seem morbid, and/or suicidal to the average healthy individual. The truth of the matter is, I have very little control over anything in my life and I've been hell and back. I know exactly what it's like to be on the brink of death. I've experienced being dependent on machines for life support. My life span is not that of the average person. I am not healthy. I know what it's like to feel like a burden and to have put family in the position to have to make life and death decisions for me. Therefore, I feel as though I both have to and want consider ALL of my options. I've already had to put my wishes down in writing, in my advanced directive, in case I'm unable to communicate my wants. I'm just at a place right now, where I want to know all my options, even if I decide to exercise while I still can communicate them. I mean, my living well basically already states everything I'm asking. I'm just wondering what I'd go through, and/or experience physically, based on medical experience and advice.
- Posted using BlogPress from my iPad
Friday, March 4, 2011
Questioning Life & My Options
I've come to a point in my life where I find myself at a crossroad. I’ve been struggling the last five and a half years living with paralysis. It’s impossible to truly express the emotional rollercoaster ride that I’ve been on, since June 2005. I’ve tried my best to be open, about my thoughts and feelings. I’ve tried very hard to convey the magnitude of loss that I sustained, due to my injury, as well as the hardships of living with paralysis on a daily basis. Despite my best efforts, I feel like the average person can never understand how much I’ve suffered and continue to suffer. Words alone, aren’t enough to garnish empathy; sympathy perhaps. Even the people closest to me, that witness all that I have to endure, can never know what it’s like to live in my shoes. Although I often seek advice from other people living with paralysis, the pool of people that have/are lived/living through what I have/am, is very small. There aren’t many women in their early thirties with high level, complete spinal cord injuries. Even those that are out there, everyone’s life before their injury and at the point of injury differ. It’s near impossible to find other women that were injured in their mid twenties, that also lost careers, relationships, and everything else in between. While I appreciate the input and advice I’ve been given by injured men, I feel a huge disconnect and feel very isolated and lonely. The few women I have met, that I do consider able to understand me, are mostly all struggling just as much as I am, to cope with the insane amount of loss and change that our injuries have left us with.
Paralysis is so unique a state of being, that many times the things I experience (sensations, or lack thereof) have no comparison to when I was on my feet. Unless you’ve lived through it, you have no idea what it’s like. Anything you imagine is pale in comparison to what it’s like to live with it. There is no way to simulate the lack of feeling, on such as scale as a high level spinal cord injury. I’m not just paralyzed, I’m imprisoned. I’m cut off from 85% of my body. I can only feel my head, neck, shoulders, some of my outer arm (only up to & not including the elbow) and half of my breasts (top half). It’s as if the rest of me no longer exists in certain respects, like outside touch, or stimulation. Unfortunately, I do feel phantom pains, pressure and discomfort, that has no real rhyme or reason, and usually has no medical diagnosis, or solution. There is no way to fully grasp how it feels to lose all sense of independence and dignity overnight. My spinal cord injury stole my ability to be self sufficient in a matter of seconds, and I’ve been wrestling with how to cope with the void left behind, for almost six years. My injury has left me feeling constantly vulnerable, anxious, depressed, full of regret, lost, deprived and scared. While I’ve tried my best to remain positive, despite the bleak reality that a cure is most likely never going to be a reality for me, I feel justified in feeling the way that I do. I’ve made proactive steps ever since day one, to stay as positive and as mentally strong as possible, so that I could somehow keep moving forward, against my inner dissatisfaction of my life and the compromises I’m forced into making every day. I’ve sought counseling, gone to therapy, take an ever growing number of pills (anti-depressants, sleep aides and anti-anxiety meds), share with my peers, write, paint, pray meditate, distraction, etc. and feel like I’m running on vapors and running out of options. I’ve been pushing forward more so for my loved ones, than for myself, and find it increasingly harder to find reason, and/or motivation to essentially keep torturing myself.
It’s maddeningly frustrating to feel like I constantly have to justify for why I feel so down. I get so angry inside and just want to scream sometimes, “are you blind?!” to those people who expect me to accept all that I’ve lost and just to keep moving on with a smile on my face. Most of the time I assume it’s ignorance that makes people have unrealistic expectations. Reality is, most people don’t have a clue what it’s like to be forced into (out of lack of choice) accepting help: to need another adult to bathe, feed, and dress you, to have no control over bodily functions, to need a bowel regime and catheter, to need another person’s help with intimate hygiene tasks, like mouth care, shaving and menstruation, to need help for the smallest and otherwise seemingly insignificant tasks like scratching and itch, or fixing a wrinkle in your clothing, almost total lack of privacy, to be devoid of sensations and cut off from almost all physical intimacy and near total deprivation of sexual pleasure. Is it right for people to expect me (and people in my similar situation) to keep living this way, knowing full well that no one would ever knowingly choose to live this way? I mean, when someone is newly injured there’s always the hope of a cure. Once an individual is medically stable, they’re pretty much stuck living with paralysis. Once reality really hits, and/or hope for a cure fades away, what choices are we left with? Do I really have a choice but to cope the best as I can? Is it right to impose such a harsh quality of life onto someone? At times, I wish I wouldn’t have had that initial hope; that I would’ve given up when death would’ve come easily. Instead, I fought (and continue) to live a compromised version of my old life. It just never seems to get any easier. In fact, coping has gotten progressively harder, and my hope for my old life has faded away. I’m nearly always sad and feel trapped, with few options.
Since my injury, I’ve thought long and hard about quality of life, and about death. I’ve had to. I’ve put my wishes down in my living will, and often wish I would’ve seriously considered what I deemed as quality, before my accident. If I had the living will I have now, at the time of my accident, I would’ve spared myself the last five and a half years of pain. After the trauma and sheer terror of my first year, post accident, I know for certain that I never want to live reliant on machines. I feel it’s bad enough to be completely reliant on people and medication, let alone needing a ventilator, or treatment like dialysis. I’ve been on a ventilator, completely paralyzed. It was a hell on earth that I never want to relive. As scary as death seems to me, it offers the hope of eternal life, or at the very least, an escape from the chronic sickness and emotional pain that I feel every day. Although, I have mixed feelings of sadness for my loved ones and fear, for myself, I find myself contemplating my own mortality on a daily basis. What options do I have? It’s not so easy as just saying, “I give up.” If that were the case, I’m sure many people that are living with paralysis would not be here. At this point, my future seems bleak and it’s hard to be in the dark state that I’m currently in.
There are like I said earlier, people out there that do have a better understanding of my situation, and are somehow able to surpass all of obstacles of paralysis and find happiness. So then I begin to wonder if I’m just weak, for not being able to find joy, and for being so unhappy. Of the people that I know that are living with paralysis, I can’t help but wonder how it is that some of them have continued to try moving forward for decades. I don’t want to live into my forties, if it means I’m still living in a chair. However, I find “giving up” takes perhaps more courage than just scraping by. What are my realist options? I have the right to refuse nutrition, hydration, medications and treatments. What does that really mean? I feel like a lot of my initial strength to fight to live, came out of ignorance and denial of what my life would be like. I’m at a point where I feel like I’m on the verge of going crazy, and I don’t want to choose to die out of ignorance either. The process I’d have to endure, in order to die, might be so unbearable that I might be tempted into backing out, and fight to live again. It’s a horribly sad thought that I’ve thought about many times. Understandably, most people don’t want to contemplate death, or indulge my suicidal tendencies, by giving me straight answers. Then again, up until recently, I was not seeking out specific answers.
I feel as though I’m battling myself, in finding reasons to keep moving forward. In the late hours of the night, I think about my life and the choices I’ve made. I beat myself up over regrets and find myself pleading and begging God to be merciful. Every night, for a long while, I’ve asked God (if he/she exists) to either cure me, or take me. Obviously, I’ve yet to get a response. I can’t help but wrestle with myself over morals and ethics. I wonder if giving up on relying on others is the same as taking my own life. The superstitious (or perhaps faith) part of me wants to know if God would consider refusal of help suicide, and what that would mean for my soul (if I have one). No one can give me concrete answers to those questions. All I know is that it is illegal for my loved ones, or medical professionals to assist me. Therefore, I can’t ask for an injection, or a handful of pills (a quick, peaceful death), without putting that person at criminal liability and/or horrible guilt. I know that if it were legal here (like in Switzerland) I could find it in myself to ask for help, but since it isn’t, I can’t and don’t expect anyone to ruin their own life, for the sake of ending mine. Therefore, my only real options are to refuse the treatments, medication and/or food and water that are keeping me alive. I am curious to know the medical repercussions of such a decision would be and what I’d have to endure, if I chose to exercise my rights. What kind of death would it be, to starve myself of food and water? How long would it take? What would happen if I refused to continue my bowel regime and/or stopped taking my medication? Would those decisions cause a lot of physical pain? Would I qualify for palliative care, like hospice? Would I be entitled to morphine, or something similar, to ease the pain and stress of hunger, impaction, and/or whatever discomforts that refusing those things would bring? What means would be the quickest, least painful way? I did ask my doctor some of these questions, but only got vague responses. I think that’s mostly because he wants me to keep on living, but also out of lack of knowledge. So I’m left wondering if I can find the answers, and if so where? Although part of me feels like a failure, or weak for considering death, I feel like I have the right to know the answers to these questions.
I hesitated to even post this, as I'm sure there are many that might not agree with, or condone this type of dialogue, or conversation. I also know that this blog will cause my loved ones pain. In fact, I posted this on the CareCure forums first (about a week ago), in hopes of connecting with other people with SCIs, and giving myself a chance to gather some feedback from people in similar situations. I stirred up a decent response, and have been continuing to reply to the ideas, and comments that people have shared with me.
I’m just looking for answers. I don’t expect anyone to advocate the thought of giving up on life. I understand that there are many people that are fine with their lives, and living with paralysis. I also expect that most anyone who reads this will probably try and dissuade me from taking drastic measures and offer me I pep talk. I’m not even saying that I am giving up. I just want to know what my options are, at this point in my life. I realize that I’m at a very low point; that’s precisely why I’m seeking help. I don’t want to feel miserable, but I am.
- Posted using BlogPress from my iPad
Paralysis is so unique a state of being, that many times the things I experience (sensations, or lack thereof) have no comparison to when I was on my feet. Unless you’ve lived through it, you have no idea what it’s like. Anything you imagine is pale in comparison to what it’s like to live with it. There is no way to simulate the lack of feeling, on such as scale as a high level spinal cord injury. I’m not just paralyzed, I’m imprisoned. I’m cut off from 85% of my body. I can only feel my head, neck, shoulders, some of my outer arm (only up to & not including the elbow) and half of my breasts (top half). It’s as if the rest of me no longer exists in certain respects, like outside touch, or stimulation. Unfortunately, I do feel phantom pains, pressure and discomfort, that has no real rhyme or reason, and usually has no medical diagnosis, or solution. There is no way to fully grasp how it feels to lose all sense of independence and dignity overnight. My spinal cord injury stole my ability to be self sufficient in a matter of seconds, and I’ve been wrestling with how to cope with the void left behind, for almost six years. My injury has left me feeling constantly vulnerable, anxious, depressed, full of regret, lost, deprived and scared. While I’ve tried my best to remain positive, despite the bleak reality that a cure is most likely never going to be a reality for me, I feel justified in feeling the way that I do. I’ve made proactive steps ever since day one, to stay as positive and as mentally strong as possible, so that I could somehow keep moving forward, against my inner dissatisfaction of my life and the compromises I’m forced into making every day. I’ve sought counseling, gone to therapy, take an ever growing number of pills (anti-depressants, sleep aides and anti-anxiety meds), share with my peers, write, paint, pray meditate, distraction, etc. and feel like I’m running on vapors and running out of options. I’ve been pushing forward more so for my loved ones, than for myself, and find it increasingly harder to find reason, and/or motivation to essentially keep torturing myself.
It’s maddeningly frustrating to feel like I constantly have to justify for why I feel so down. I get so angry inside and just want to scream sometimes, “are you blind?!” to those people who expect me to accept all that I’ve lost and just to keep moving on with a smile on my face. Most of the time I assume it’s ignorance that makes people have unrealistic expectations. Reality is, most people don’t have a clue what it’s like to be forced into (out of lack of choice) accepting help: to need another adult to bathe, feed, and dress you, to have no control over bodily functions, to need a bowel regime and catheter, to need another person’s help with intimate hygiene tasks, like mouth care, shaving and menstruation, to need help for the smallest and otherwise seemingly insignificant tasks like scratching and itch, or fixing a wrinkle in your clothing, almost total lack of privacy, to be devoid of sensations and cut off from almost all physical intimacy and near total deprivation of sexual pleasure. Is it right for people to expect me (and people in my similar situation) to keep living this way, knowing full well that no one would ever knowingly choose to live this way? I mean, when someone is newly injured there’s always the hope of a cure. Once an individual is medically stable, they’re pretty much stuck living with paralysis. Once reality really hits, and/or hope for a cure fades away, what choices are we left with? Do I really have a choice but to cope the best as I can? Is it right to impose such a harsh quality of life onto someone? At times, I wish I wouldn’t have had that initial hope; that I would’ve given up when death would’ve come easily. Instead, I fought (and continue) to live a compromised version of my old life. It just never seems to get any easier. In fact, coping has gotten progressively harder, and my hope for my old life has faded away. I’m nearly always sad and feel trapped, with few options.
Since my injury, I’ve thought long and hard about quality of life, and about death. I’ve had to. I’ve put my wishes down in my living will, and often wish I would’ve seriously considered what I deemed as quality, before my accident. If I had the living will I have now, at the time of my accident, I would’ve spared myself the last five and a half years of pain. After the trauma and sheer terror of my first year, post accident, I know for certain that I never want to live reliant on machines. I feel it’s bad enough to be completely reliant on people and medication, let alone needing a ventilator, or treatment like dialysis. I’ve been on a ventilator, completely paralyzed. It was a hell on earth that I never want to relive. As scary as death seems to me, it offers the hope of eternal life, or at the very least, an escape from the chronic sickness and emotional pain that I feel every day. Although, I have mixed feelings of sadness for my loved ones and fear, for myself, I find myself contemplating my own mortality on a daily basis. What options do I have? It’s not so easy as just saying, “I give up.” If that were the case, I’m sure many people that are living with paralysis would not be here. At this point, my future seems bleak and it’s hard to be in the dark state that I’m currently in.
There are like I said earlier, people out there that do have a better understanding of my situation, and are somehow able to surpass all of obstacles of paralysis and find happiness. So then I begin to wonder if I’m just weak, for not being able to find joy, and for being so unhappy. Of the people that I know that are living with paralysis, I can’t help but wonder how it is that some of them have continued to try moving forward for decades. I don’t want to live into my forties, if it means I’m still living in a chair. However, I find “giving up” takes perhaps more courage than just scraping by. What are my realist options? I have the right to refuse nutrition, hydration, medications and treatments. What does that really mean? I feel like a lot of my initial strength to fight to live, came out of ignorance and denial of what my life would be like. I’m at a point where I feel like I’m on the verge of going crazy, and I don’t want to choose to die out of ignorance either. The process I’d have to endure, in order to die, might be so unbearable that I might be tempted into backing out, and fight to live again. It’s a horribly sad thought that I’ve thought about many times. Understandably, most people don’t want to contemplate death, or indulge my suicidal tendencies, by giving me straight answers. Then again, up until recently, I was not seeking out specific answers.
I feel as though I’m battling myself, in finding reasons to keep moving forward. In the late hours of the night, I think about my life and the choices I’ve made. I beat myself up over regrets and find myself pleading and begging God to be merciful. Every night, for a long while, I’ve asked God (if he/she exists) to either cure me, or take me. Obviously, I’ve yet to get a response. I can’t help but wrestle with myself over morals and ethics. I wonder if giving up on relying on others is the same as taking my own life. The superstitious (or perhaps faith) part of me wants to know if God would consider refusal of help suicide, and what that would mean for my soul (if I have one). No one can give me concrete answers to those questions. All I know is that it is illegal for my loved ones, or medical professionals to assist me. Therefore, I can’t ask for an injection, or a handful of pills (a quick, peaceful death), without putting that person at criminal liability and/or horrible guilt. I know that if it were legal here (like in Switzerland) I could find it in myself to ask for help, but since it isn’t, I can’t and don’t expect anyone to ruin their own life, for the sake of ending mine. Therefore, my only real options are to refuse the treatments, medication and/or food and water that are keeping me alive. I am curious to know the medical repercussions of such a decision would be and what I’d have to endure, if I chose to exercise my rights. What kind of death would it be, to starve myself of food and water? How long would it take? What would happen if I refused to continue my bowel regime and/or stopped taking my medication? Would those decisions cause a lot of physical pain? Would I qualify for palliative care, like hospice? Would I be entitled to morphine, or something similar, to ease the pain and stress of hunger, impaction, and/or whatever discomforts that refusing those things would bring? What means would be the quickest, least painful way? I did ask my doctor some of these questions, but only got vague responses. I think that’s mostly because he wants me to keep on living, but also out of lack of knowledge. So I’m left wondering if I can find the answers, and if so where? Although part of me feels like a failure, or weak for considering death, I feel like I have the right to know the answers to these questions.
I hesitated to even post this, as I'm sure there are many that might not agree with, or condone this type of dialogue, or conversation. I also know that this blog will cause my loved ones pain. In fact, I posted this on the CareCure forums first (about a week ago), in hopes of connecting with other people with SCIs, and giving myself a chance to gather some feedback from people in similar situations. I stirred up a decent response, and have been continuing to reply to the ideas, and comments that people have shared with me.
I’m just looking for answers. I don’t expect anyone to advocate the thought of giving up on life. I understand that there are many people that are fine with their lives, and living with paralysis. I also expect that most anyone who reads this will probably try and dissuade me from taking drastic measures and offer me I pep talk. I’m not even saying that I am giving up. I just want to know what my options are, at this point in my life. I realize that I’m at a very low point; that’s precisely why I’m seeking help. I don’t want to feel miserable, but I am.
- Posted using BlogPress from my iPad
Thursday, February 10, 2011
Haiku: Wish To Be Set Free
Prisoner within
Trapped inside my own body
Longing to escape
Deprived of feeling
Yearning for lost sensations
Overwhelming loss
Haunting memories
Wishing for my freedom back
Wanting to forget
Praying for a cure
Accepting reality
Confronting my fears
Robbed of privacy
Feeling like I'm a burden
Stolen dignity
Envious of all
Dreaming of the life I had
Plagued by jealousy
Stranger in my skin
Life will never be the same
Wish to be set free
Trapped inside my own body
Longing to escape
Deprived of feeling
Yearning for lost sensations
Overwhelming loss
Haunting memories
Wishing for my freedom back
Wanting to forget
Praying for a cure
Accepting reality
Confronting my fears
Robbed of privacy
Feeling like I'm a burden
Stolen dignity
Envious of all
Dreaming of the life I had
Plagued by jealousy
Stranger in my skin
Life will never be the same
Wish to be set free
Saturday, January 22, 2011
Disappointing Myself & Facing Harsh Realities
My little sister recently had a baby. My niece being born is of course a big deal to me, and to our family at large. We were blessed that she is healthy, despite being born a bit early and it being a difficult pregnancy for my sister. She is the first of her generation on that side of my family, and quite possibly one of my parents' (mom and stepdad's) only grandchild for quite some time (possibly even ever). Ironically, my LITTLE sister is the youngest of my siblings (eight years my minor) and the first of us (on that side of my family tree, which is a bit complicated, thanks to divorce) to get married and start a family. While I'm genuinely thrilled about having a new addition to the family and eternally grateful that she's healthy and that my sister made it through the pregnancy, the last ten months have been a roller coaster ride of emotions for me.
On one hand, I don't even want to discuss my pain, for fear of upsetting my sister. I never want to be a downer, or feel like I'm diminishing other people's joy with my misery. I don't want her to think I'm not happy for her. I am. However, I'm also jealous and extremely disappointed in myself and in my life in general. I've already dealt with my two best friends getting married (one also has a son), and continue to experience the mix of happiness, pain, guilt, jealousy and frustration every time one of my friends gets married or has a baby. At thirty years old, and five and a half years post SCI, I actually thought I had started getting numb. My list of married friends, versus single friends tipped the scale a while back, and friends with kids is nearly there as well. I thought my skin had thickened a bit, as in the past year or so, it hasn't felt like the wind knocking out, gut punch that I used to experience, every time I had to check a friend off the "single without a family" list. It had seemingly toned done to more of a slap across the face. Regardless, I still find myself having a pity party and reexamining all my regrets and "what ifs" every time I see someone else enjoying the kind of life I thought I'd have.The only difference that time has seemed to make is that I had started to bounce back (emotionally) a bit quicker. My baby sister having a baby has been much harder to deal with, in comparison to any of my friends. Her pregnancy and the birth of my niece has stirred up all the crap that's constantly lurking in the back of mind and I hate myself for letting it effect me in the way that it has. The fact that she's my sister makes me that much more repulsed by my own selfish thoughts. I feel like I should be extra happy for my sister, instead of extra sad and hard on myself. I hesitate to express my feelings in this matter, and wonder if it's best to not say a peep.
On one hand, I don't even want to discuss my pain, for fear of upsetting my sister. I never want to be a downer, or feel like I'm diminishing other people's joy with my misery. I don't want her to think I'm not happy for her. I am. However, I'm also jealous and extremely disappointed in myself and in my life in general. I've already dealt with my two best friends getting married (one also has a son), and continue to experience the mix of happiness, pain, guilt, jealousy and frustration every time one of my friends gets married or has a baby. At thirty years old, and five and a half years post SCI, I actually thought I had started getting numb. My list of married friends, versus single friends tipped the scale a while back, and friends with kids is nearly there as well. I thought my skin had thickened a bit, as in the past year or so, it hasn't felt like the wind knocking out, gut punch that I used to experience, every time I had to check a friend off the "single without a family" list. It had seemingly toned done to more of a slap across the face. Regardless, I still find myself having a pity party and reexamining all my regrets and "what ifs" every time I see someone else enjoying the kind of life I thought I'd have.The only difference that time has seemed to make is that I had started to bounce back (emotionally) a bit quicker. My baby sister having a baby has been much harder to deal with, in comparison to any of my friends. Her pregnancy and the birth of my niece has stirred up all the crap that's constantly lurking in the back of mind and I hate myself for letting it effect me in the way that it has. The fact that she's my sister makes me that much more repulsed by my own selfish thoughts. I feel like I should be extra happy for my sister, instead of extra sad and hard on myself. I hesitate to express my feelings in this matter, and wonder if it's best to not say a peep.
The truth is, I'm reeling with jealousy, guilt over the jealousy and feelings of inadequacy and like a failure as a sister and as a daughter as well. Not being able to give my parents the joy of a grandchild is tough. I always thought I’d be the first of my siblings to share that experience with my parents. It’s painful knowing that I most likely will never give my parents grandchildren, or be able to give my siblings nieces or nephews. I see the joy in my parent's eyes and hear the excitement and love my parents have for my niece, and I wish I could give them that same happiness, with children of my own. It's also extremely hard not being able to be the type of big sister, or daughter like I was before, or like I want to be. With my youngest sister, I was always the giver, the helper, the one she could turn to advice for and tried to set an example and urge her to learn from my mistakes. Despite our big gap in age, I was very close with her. I enjoyed taking both of my sisters out, buying them things, and helping them. I thought I'd have my own child by now & always imagined myself being able to give advice & be there for my sisters during their own pregnancies. I thought I'd be present to see my nieces and nephews being born and be able to help assist in raising them. Not to mention, I thought I'd have experience and knowledge to share with them, from having raised my own children. The fact that none of that happened makes me feel like a huge failure. I know my family probably doesn't see me that way and that I'm mainly a disappointment to myself. There's also many times I'd like to be more involved, but I just can't handle it, or realize that there's nothing I can do to help.
One of my biggest desires has always been to have a family of my own. When I was still on my feet the thought of getting married and having children always seemed like a certainty to me. I had been in several long term relationships and had no doubt in my mind that I would meet "Mr. Right." Finishing college and establishing my career were important prerequisites to settling down, and once I had accomplished both of those things I thought it would just be a matter of time.
I had ended a five and a half year relationship with someone the year before my accident. All throughout college I had fooled myself into believing that he would "pop the question" once I was done with school. Early on in our relationship, we had many ups and downs, but ultimately I never felt like I could be myself with him and his lack of commitment only fueled my doubt in his trust in me and forced a wedge between us. It's not that I wanted to be a party girl, or anything like that, I just wanted the freedom and trust from him to go out with friends and be able to associate with both men and women. His own insecurities and my poor judgment for putting up with it for so long, took a huge toll on my self esteem and in the end I still have regrets and feel as though I wasted five years of both of our lives, for not realizing that we were never suited for one another in the first place. I realize now that it was never him that I wanted; it was the idea of the husband, kids and house with the picket fence that he had initially dangled in front of me, that made me latch on for so long. I tried so hard to be someone I wasn't, to be with someone who wasn't right for me, because of the bigger dream, the bigger picture, and it made me lose sight of a lot of the smaller, seemingly obvious (to everyone else) problems, that ultimately made me leave.
It's scary how easy it is to get stuck in a rut. Change can be scary, and it sometimes forces us to settle with what we have, out of fear of possibly never finding anything better. My own poor self esteem and non belief in myself kept me trapped, fighting an uphill battle of trying to make a bad match work. The longer time went on, the harder it became to want to let go. I found myself stuck in a vicious cycle of not wanting to throw away all the time and energy I'd invested into the relationship, while at the same time regretting I'd ever put in that much time in the first place. Even though there were a million little red flags along the way, I kept holding on to the delusion that getting engaged, or getting married, would somehow make all of our problems go away. In retrospect, I know there were aspects of myself that I held back on, because I felt I needed the proof of a serious commitment, to let those barriers down. On the other hand, there's no way in knowing if my openness would have changed much, because in the end, I could never really be free with such a rigid person as my partner. Looking back, it seems insane to think that making the ultimate commitment of marriage to "Mr. Wrong" (out of fairness- it's not to say that he couldn't be right for someone else, just not for me) would have ever made me truly happy. Getting married, just for the sake of being married is ridiculous.
I'm thankful that I finally saw the light, and had the courage to leave. I had a little bit of a rough time letting go at first, but felt truly liberated once I started enjoying the freedom of being single. I had just turned twenty-four at the time, and within those first few months after my breakup I felt as though I was really discovering myself for the first time, and rediscovering life in general. I had my career to keep me grounded, which kept me from going completely wild (at first I felt like all I wanted to do was go out and make up for feeling suffocated for so long). Don't get me wrong, I did go out on the weekends, and reconnected with old friends. I did stretch myself thin, trying to balance a busy social life and a busy career, but I always had work on my mind.
Despite some criticism that I got from my parents at the time, I can confidently say that I felt good about my life and have always tried juggling a lot on my plate. While they noticed a change in me going out, and dating, they failed to realize that I was often the first teacher to arrive at work and the last to leave. That year I juggled teaching, yearbook club, attending school functions for yearbook, painting a mural, put on three student art exhibits, took two graduate painting courses, moved out and into my own apartment, began going to the gym and had an active social life. I was busy, to say the least, but I felt happier and more alive than I had ever felt in my entire life.
It was during the last six months on my feet that I met "Mr. Right" (or so it seemed). We had a whirlwind affair, and had just started the process of moving into together when I was injured. It had been a long distance relationship, that had us both traveling back and forth between New Jersey and Pennsylvania (about a two hour drive). It's hard to even describe our relationship, other than saying that when I was with him I felt like I was completely myself. It was first time I felt like everything clicked. Nothing is perfect, but I felt as though we complimented one another on a level that I'd never experienced before. Superficial things like, degrees, money, or career didn't matter with him. I can remember thinking to myself that those things only mattered to me before, because they were fillers for things the other people lacked. We were at different places in terms of career, money and education, but those things could all easily be changed, with opportunity and time (Lord knows, plenty of people with good careers, and money have lost it all, as easily as others have gained it). "Mr. Right" made me happy, just being with him, and I knew that he had the potential and power to achieve all of the surface stuff, if he wanted it. Status isn't what makes people compatible, it's personality and core character traits (physical attraction helps for sure). During those last six months on my feet, I felt invincible. I really believed I had all my dreams within my reach; that all the pieces my life had fallen together. I had my career and was very happy with my work. I thought I'd found my soul mate and that we were about to start our life together, and in a little more time (maybe a couple of years-once I had tenure), we'd start to build our family.
Unfortunately, my life didn't play out the way I'd imagined it. All the pieces of my life, that I'd built up until June 5, 2005, came crashing down like a house of cards, in a matter of seconds. One stupid mistake to dive into a pool, changed my life forever. Instead of having tenure, being married and having children of my own, I'm thirty, single, unemployed and paralyzed, with little to no hope, of ever fulfilling the dream of having a family of my own (or my career back, for that matter). Some might argue, if "Mr. Right" really was "right" for me, then he would of stayed, despite my accident. That is easier said than done, and most people that say that have no clue what my day to day life entails, and how much of a sacrifice it would've been for him. Honestly, I don't know that I could've stuck it through, if our roles had been reversed. I'm also keenly aware that there is no guarantee that if I had never dove into that pool, that my life would've run as smoothly as I'd envisioned. There are a million variables to consider. However, I feel certain that if I were still on my feet that by now I'd still be teaching and have started my own family (whom ever that might have ended up being with).
One of my biggest desires has always been to have a family of my own. When I was still on my feet the thought of getting married and having children always seemed like a certainty to me. I had been in several long term relationships and had no doubt in my mind that I would meet "Mr. Right." Finishing college and establishing my career were important prerequisites to settling down, and once I had accomplished both of those things I thought it would just be a matter of time.
I had ended a five and a half year relationship with someone the year before my accident. All throughout college I had fooled myself into believing that he would "pop the question" once I was done with school. Early on in our relationship, we had many ups and downs, but ultimately I never felt like I could be myself with him and his lack of commitment only fueled my doubt in his trust in me and forced a wedge between us. It's not that I wanted to be a party girl, or anything like that, I just wanted the freedom and trust from him to go out with friends and be able to associate with both men and women. His own insecurities and my poor judgment for putting up with it for so long, took a huge toll on my self esteem and in the end I still have regrets and feel as though I wasted five years of both of our lives, for not realizing that we were never suited for one another in the first place. I realize now that it was never him that I wanted; it was the idea of the husband, kids and house with the picket fence that he had initially dangled in front of me, that made me latch on for so long. I tried so hard to be someone I wasn't, to be with someone who wasn't right for me, because of the bigger dream, the bigger picture, and it made me lose sight of a lot of the smaller, seemingly obvious (to everyone else) problems, that ultimately made me leave.
It's scary how easy it is to get stuck in a rut. Change can be scary, and it sometimes forces us to settle with what we have, out of fear of possibly never finding anything better. My own poor self esteem and non belief in myself kept me trapped, fighting an uphill battle of trying to make a bad match work. The longer time went on, the harder it became to want to let go. I found myself stuck in a vicious cycle of not wanting to throw away all the time and energy I'd invested into the relationship, while at the same time regretting I'd ever put in that much time in the first place. Even though there were a million little red flags along the way, I kept holding on to the delusion that getting engaged, or getting married, would somehow make all of our problems go away. In retrospect, I know there were aspects of myself that I held back on, because I felt I needed the proof of a serious commitment, to let those barriers down. On the other hand, there's no way in knowing if my openness would have changed much, because in the end, I could never really be free with such a rigid person as my partner. Looking back, it seems insane to think that making the ultimate commitment of marriage to "Mr. Wrong" (out of fairness- it's not to say that he couldn't be right for someone else, just not for me) would have ever made me truly happy. Getting married, just for the sake of being married is ridiculous.
I'm thankful that I finally saw the light, and had the courage to leave. I had a little bit of a rough time letting go at first, but felt truly liberated once I started enjoying the freedom of being single. I had just turned twenty-four at the time, and within those first few months after my breakup I felt as though I was really discovering myself for the first time, and rediscovering life in general. I had my career to keep me grounded, which kept me from going completely wild (at first I felt like all I wanted to do was go out and make up for feeling suffocated for so long). Don't get me wrong, I did go out on the weekends, and reconnected with old friends. I did stretch myself thin, trying to balance a busy social life and a busy career, but I always had work on my mind.
Despite some criticism that I got from my parents at the time, I can confidently say that I felt good about my life and have always tried juggling a lot on my plate. While they noticed a change in me going out, and dating, they failed to realize that I was often the first teacher to arrive at work and the last to leave. That year I juggled teaching, yearbook club, attending school functions for yearbook, painting a mural, put on three student art exhibits, took two graduate painting courses, moved out and into my own apartment, began going to the gym and had an active social life. I was busy, to say the least, but I felt happier and more alive than I had ever felt in my entire life.
It was during the last six months on my feet that I met "Mr. Right" (or so it seemed). We had a whirlwind affair, and had just started the process of moving into together when I was injured. It had been a long distance relationship, that had us both traveling back and forth between New Jersey and Pennsylvania (about a two hour drive). It's hard to even describe our relationship, other than saying that when I was with him I felt like I was completely myself. It was first time I felt like everything clicked. Nothing is perfect, but I felt as though we complimented one another on a level that I'd never experienced before. Superficial things like, degrees, money, or career didn't matter with him. I can remember thinking to myself that those things only mattered to me before, because they were fillers for things the other people lacked. We were at different places in terms of career, money and education, but those things could all easily be changed, with opportunity and time (Lord knows, plenty of people with good careers, and money have lost it all, as easily as others have gained it). "Mr. Right" made me happy, just being with him, and I knew that he had the potential and power to achieve all of the surface stuff, if he wanted it. Status isn't what makes people compatible, it's personality and core character traits (physical attraction helps for sure). During those last six months on my feet, I felt invincible. I really believed I had all my dreams within my reach; that all the pieces my life had fallen together. I had my career and was very happy with my work. I thought I'd found my soul mate and that we were about to start our life together, and in a little more time (maybe a couple of years-once I had tenure), we'd start to build our family.
Unfortunately, my life didn't play out the way I'd imagined it. All the pieces of my life, that I'd built up until June 5, 2005, came crashing down like a house of cards, in a matter of seconds. One stupid mistake to dive into a pool, changed my life forever. Instead of having tenure, being married and having children of my own, I'm thirty, single, unemployed and paralyzed, with little to no hope, of ever fulfilling the dream of having a family of my own (or my career back, for that matter). Some might argue, if "Mr. Right" really was "right" for me, then he would of stayed, despite my accident. That is easier said than done, and most people that say that have no clue what my day to day life entails, and how much of a sacrifice it would've been for him. Honestly, I don't know that I could've stuck it through, if our roles had been reversed. I'm also keenly aware that there is no guarantee that if I had never dove into that pool, that my life would've run as smoothly as I'd envisioned. There are a million variables to consider. However, I feel certain that if I were still on my feet that by now I'd still be teaching and have started my own family (whom ever that might have ended up being with).
Admittedly, my lack of a significant other, and/or children is by choice. However, it's the practicality of my situation and the reasoning behind those choices that I'd like people to understand. There are those people out there (able bodied and disabled alike) that would say, "You can still do anything you want, just in a different way." Really?! Let's examine the facts.
I could certainly have a boyfriend, or a husband. I don't deny that I hold myself back in this area. Everything I choose to do, or not to do, is done by weighing the pros and cons of any given situation. Although people love pointing out that "I can still do everything, just in a different way," the way I'd have to do certain things, or the compromises involved just don't cut it sometimes. There are many aspects of my old life (or life for the average able bodied person) that have become meaningless to me, because the aspects that I most loved about the experience/activity are now gone, and there just is no compromise or way around that, period. I see absolutely no point in going through the motions of something, just to say "I can," when in reality I can't. I refuse to do things, just for the sake of doing things, if the pleasurable aspects of the activity or thing no longer exist. What purpose does that serve? I'm certainly not fooling myself. There are countless things that no longer give me enjoyment, or create more stress than they are worth doing. My career is a good example, because it was the physical parts of teaching art that I loved the most. I miss the feeling of using different materials in my hands, typing, hanging displays, working one on one with the kids, organizing my supplies, preparing my classroom, crinkling, tearing and cutting paper, standing at my classroom door to meet my students and physically being able to help them. Yes, I could still teach art, but so much of what loved most about my career is gone. The remnants just don't compare and don't make all the effort, and coordination needed to get to work on a daily basis even worth doing. I feel the same way about having a significant other, and about having a family, in my current condition.
Let's face it, the key difference dividing friends from significant others is physical intimacy. Although sex is just one component to a healthy relationship, it is necessary and important. I was a very physical person before my accident. I enjoyed all the kinesthetic aspects of life: making art, exercise, dancing, experiencing different tactile textures in my environment and through physical intimacy. I've always enjoyed the feeling, and process of doing things and much as the outcome, or product of things. I didn't just take a shower to get clean. I enjoyed the sensation of the hot water flowing down my body, and savored the aroma and sensations and textures of different soaps and creams. Trying on clothes, was just as fun, if not more, than the thrill of buying new clothes. I enjoyed seeing how the fabric hung on my body, and feeling the texture of it, as it rubbed against my skin. The experience of creating a work of art, (such as feeling a scissor slice through a piece of paper, or a lump of clay squish between my fingers) was just as important as the final result. The thought of having a relationship, without the pleasure of physical intimacy, in my mind, is no more than a friendship. Just the mere fact of being with someone, and having the desire to be intimate and not be able to feel the experience of doing so, is more painful and frustrating than it's worth. When people (doctors, nurses and people in the paralysis community) say that I can still have sex, it just pisses me off. It's a joke. Reality is, someone could have sex with me, but I cannot have sex. Why some people cannot, or choose not to admit this reality is beyond me.
Personally, the thought of being physically intimate with anyone in my current state, is not only
stressful, it is disturbing. Yes, I could allow someone to have sex with me, but would not be able to do anything in terms of interaction, besides kissing. I cannot feel 85% of my body (including all of my lady parts), so therefore would be left lying there, with no real interaction, or enjoyment. Can someone please explain to me what point there would be to that exercise, other than perhaps satisfying a spouse (not likely), or for procreation? If anything, I think such an experience would leave me feeling more sexually frustrated than I was (or am) before the encounter took place. It's a touchy subject, that I find people like to sugar coat, or avoid all together. Unfortunately I don’t have the luxury of not considering it. We as humans are physical beings. Sex and physical affection are important aspects of life. Physical affection is good for the psyche, and being completely cut off and devoid of it, is not easy. Numerous studies have shown there are long term negative effects of depriving babies of physical affection. Sex aside, as humans, we need to feel the warmth, and touch of other people. It is an essential part of life and our overall development. Paralysis robs individuals of their sense of touch and is in essence a type of solitary confinement. Even if I had a partner, I'm cut off from physical sensation, there's no way around that. Without the physical aspect (Yes, I know I can still kiss. I'm also not a twelve year old. I require more to truly feel satisfied) of a romantic relationship, it really just boils down to friendship. I have plenty of good, supportive friends. In terms of having a boyfriend, or husband, I just don't see it working for me, based on my limitations, desires and needs.
I could certainly have a boyfriend, or a husband. I don't deny that I hold myself back in this area. Everything I choose to do, or not to do, is done by weighing the pros and cons of any given situation. Although people love pointing out that "I can still do everything, just in a different way," the way I'd have to do certain things, or the compromises involved just don't cut it sometimes. There are many aspects of my old life (or life for the average able bodied person) that have become meaningless to me, because the aspects that I most loved about the experience/activity are now gone, and there just is no compromise or way around that, period. I see absolutely no point in going through the motions of something, just to say "I can," when in reality I can't. I refuse to do things, just for the sake of doing things, if the pleasurable aspects of the activity or thing no longer exist. What purpose does that serve? I'm certainly not fooling myself. There are countless things that no longer give me enjoyment, or create more stress than they are worth doing. My career is a good example, because it was the physical parts of teaching art that I loved the most. I miss the feeling of using different materials in my hands, typing, hanging displays, working one on one with the kids, organizing my supplies, preparing my classroom, crinkling, tearing and cutting paper, standing at my classroom door to meet my students and physically being able to help them. Yes, I could still teach art, but so much of what loved most about my career is gone. The remnants just don't compare and don't make all the effort, and coordination needed to get to work on a daily basis even worth doing. I feel the same way about having a significant other, and about having a family, in my current condition.
Let's face it, the key difference dividing friends from significant others is physical intimacy. Although sex is just one component to a healthy relationship, it is necessary and important. I was a very physical person before my accident. I enjoyed all the kinesthetic aspects of life: making art, exercise, dancing, experiencing different tactile textures in my environment and through physical intimacy. I've always enjoyed the feeling, and process of doing things and much as the outcome, or product of things. I didn't just take a shower to get clean. I enjoyed the sensation of the hot water flowing down my body, and savored the aroma and sensations and textures of different soaps and creams. Trying on clothes, was just as fun, if not more, than the thrill of buying new clothes. I enjoyed seeing how the fabric hung on my body, and feeling the texture of it, as it rubbed against my skin. The experience of creating a work of art, (such as feeling a scissor slice through a piece of paper, or a lump of clay squish between my fingers) was just as important as the final result. The thought of having a relationship, without the pleasure of physical intimacy, in my mind, is no more than a friendship. Just the mere fact of being with someone, and having the desire to be intimate and not be able to feel the experience of doing so, is more painful and frustrating than it's worth. When people (doctors, nurses and people in the paralysis community) say that I can still have sex, it just pisses me off. It's a joke. Reality is, someone could have sex with me, but I cannot have sex. Why some people cannot, or choose not to admit this reality is beyond me.
Personally, the thought of being physically intimate with anyone in my current state, is not only
stressful, it is disturbing. Yes, I could allow someone to have sex with me, but would not be able to do anything in terms of interaction, besides kissing. I cannot feel 85% of my body (including all of my lady parts), so therefore would be left lying there, with no real interaction, or enjoyment. Can someone please explain to me what point there would be to that exercise, other than perhaps satisfying a spouse (not likely), or for procreation? If anything, I think such an experience would leave me feeling more sexually frustrated than I was (or am) before the encounter took place. It's a touchy subject, that I find people like to sugar coat, or avoid all together. Unfortunately I don’t have the luxury of not considering it. We as humans are physical beings. Sex and physical affection are important aspects of life. Physical affection is good for the psyche, and being completely cut off and devoid of it, is not easy. Numerous studies have shown there are long term negative effects of depriving babies of physical affection. Sex aside, as humans, we need to feel the warmth, and touch of other people. It is an essential part of life and our overall development. Paralysis robs individuals of their sense of touch and is in essence a type of solitary confinement. Even if I had a partner, I'm cut off from physical sensation, there's no way around that. Without the physical aspect (Yes, I know I can still kiss. I'm also not a twelve year old. I require more to truly feel satisfied) of a romantic relationship, it really just boils down to friendship. I have plenty of good, supportive friends. In terms of having a boyfriend, or husband, I just don't see it working for me, based on my limitations, desires and needs.
Even if I could somehow settle with having a basically platonic relationship with a significant other, there are numerous practical, physiological and psychological reasons as to why I choose not to have children in my condition. Can my body physically produce a child? Probably (I've never tried and therefore don't know how fertile I am). A pregnancy would be extremely difficult on my body and risky, given my condition. Given the fact that I can't feel most of my body, it also means that I'd be unable to feel and symptoms or possible problems with the pregnancy. When there is something wrong (a blockage in my catheter, incontinence, injury, or pain) that I can't feel, my body compensates by forcing my blood pressure to rise. This phenomena is called Autonomic Dysreflexia, and is something many people with paralysis live with. On one hand, AD is helpful, in the sense that my body creates symptoms, which alert me that there's something going on that I can't feel. AD presents itself in various ways, such as profuse sweating, chills or pounding headaches. When I feel these symptoms, I know I need to get help and try and find the source of the problem. AD is like a backup warning system. Unfortunately, besides the discomfort, AD also puts me at a higher risk for stroke or death. For instance, if my catheter becomes blocked, my body goes into distress over the pain in my bladder that I can no longer feel, which in turn causes AD to kick in, and my blood pressure begins to rise. If I don't have someone around to determine the cause and alleviate the blockage, my blood pressure will continue to rise and can cause me to have a stroke and/or potentially kill me. I can only imagine the discomfort and number of episodes of AD that would come along with putting my body through a pregnancy.
There are several other practical concerns that I'd need to consider, that the average woman of my age doesn't most likely have cause for concern. The added weight gain of a pregnancy would make me more susceptible to pressure sores, and make it harder for my caretakers to transfer, wash and dress me. Once I put the weight on, it would be near impossible to lose, given the fact I have little, to no means of exercising. I already watch what I eat, and restrict caloric intake, in order to maintain my weight, and doubt it would be healthy to eat any less than I already do. There's also the fact that I take a dozen pills every day, just to survive. Some of these medications would be benign to a baby, but I'm not so certain about them all. There's aspects of my medical condition, like having a bowel regime and a catheter, that I'm sure would be impacted by a pregnancy and vice versa.
Practical and health issues aside, I don't think I could bear the emotional trauma of being pregnant, or having a child in my condition. My paralysis makes it impossible for me to experience most of the aspects of pregnancy that I've looked forward to and have imagined my whole life. I'd be unable to feel my baby growing inside of me. I'd be unable to feel the touch of my loved ones hands on my belly. I couldn't stand in front of a mirror and admire my belly as is grows, or have fun trying on maternity clothes. I wouldn't be able to feel my water break, or labor pains (not that I looked forward to that part). I wouldn't be able to push, or feel the sensations of giving birth. I wouldn't be able to hold my baby for the first time (or ever), or feel what its like to breastfeed. It would be extremely difficult to not be able to do all of those things that I've anticipated my entire life and have always looked forward to knowing what they feel like first hand. I feel like less of a woman for not being able to go through the process of pregnancy in the usual sense. For me, it's very isolating to not feel like "part of the club." Pregnancy has become one more thing that I can't share in knowing through first hand experience. I have no stories of my own, nothing to add that conversation. It makes feel more detached from my peers, and more alienated by not being able to be a part of the group. Realistically speaking, even if I were to get pregnant, my experience would not fit the norm, and I'd still feel like I'm missing out on most of it.
Even if in time, I could accept the idea of a platonic marriage and turn a blind eye to all the risks and disappointments that I'd face being pregnant, the thought of having a child and not be able to care for it, is something I know 100% that I could never cope with. As silly as it might sound, I face (just a taste) the helplessness, depression and frustration I would feel having a child every day, thanks to my miniature pincher, Naama. Although she's just a dog, she's the closest thing I have to a dependent, and for as much joy as she gives me, it kills me watching everyone else care for her. It's indescribable how frustrating and sad it can be to have this, tiny, adorable creature look into my eyes, clearly needing help, or wanting something, and all I can do is sit there, powerless to do anything. Then there's the frustration and jealousy that come along with watching everyone else do the things for her, and enjoy her, in ways that I can't. I want to be able to hold her in my arms, pick her up, play with her, feed her, bathe her, dress her (yes, she wears clothes) and take her for walks, but I can't. Even if she sits on my lap, it's as if she's not there. If I drag my limp hand across her fur (using my shoulders), I can't feel her. For the most part, I'm forced to be a spectator of her life.
I experience similar sadness and frustration on an even larger scale, when I spend time with my nephew and God daughter. There's so much I want to do with them and I can't. I want to be able to scoop them up and give them a bear hug. I want to be able to get messy and do art projects together; things like coloring, sidewalk chalk, finger painting and clay. I want to be able to get down on the floor and build stuff with Legos. I wish I could babysit them, or take them places. Instead, I feel like a talking piece of furniture. I'm just stuck observing them grow and play, and although I can interact with them though words, I feel a huge disconnect to their lives. I know if I were to have a child of my own, all of the feelings I experience now with my pets and the other children that are already in my life would be magnified one hundred fold. I just can't cope with that. So despite my longing for a family of my own, the risks and all missing pieces I'd be unable to experience, vastly outweigh the positives. I know that there are women out there with high level SCIs, that have given birth, and have their own families. Everyone's situation is unique. I can only comment on my own situation, and know what challenges paralysis present me with from day to day, given my background and my unique coping skills. My reality is, that as long as I'm paralyzed, that I will never be able to fulfill my dreams of having a family of my own. That is a hard pill to swallow.
There are several other practical concerns that I'd need to consider, that the average woman of my age doesn't most likely have cause for concern. The added weight gain of a pregnancy would make me more susceptible to pressure sores, and make it harder for my caretakers to transfer, wash and dress me. Once I put the weight on, it would be near impossible to lose, given the fact I have little, to no means of exercising. I already watch what I eat, and restrict caloric intake, in order to maintain my weight, and doubt it would be healthy to eat any less than I already do. There's also the fact that I take a dozen pills every day, just to survive. Some of these medications would be benign to a baby, but I'm not so certain about them all. There's aspects of my medical condition, like having a bowel regime and a catheter, that I'm sure would be impacted by a pregnancy and vice versa.
Practical and health issues aside, I don't think I could bear the emotional trauma of being pregnant, or having a child in my condition. My paralysis makes it impossible for me to experience most of the aspects of pregnancy that I've looked forward to and have imagined my whole life. I'd be unable to feel my baby growing inside of me. I'd be unable to feel the touch of my loved ones hands on my belly. I couldn't stand in front of a mirror and admire my belly as is grows, or have fun trying on maternity clothes. I wouldn't be able to feel my water break, or labor pains (not that I looked forward to that part). I wouldn't be able to push, or feel the sensations of giving birth. I wouldn't be able to hold my baby for the first time (or ever), or feel what its like to breastfeed. It would be extremely difficult to not be able to do all of those things that I've anticipated my entire life and have always looked forward to knowing what they feel like first hand. I feel like less of a woman for not being able to go through the process of pregnancy in the usual sense. For me, it's very isolating to not feel like "part of the club." Pregnancy has become one more thing that I can't share in knowing through first hand experience. I have no stories of my own, nothing to add that conversation. It makes feel more detached from my peers, and more alienated by not being able to be a part of the group. Realistically speaking, even if I were to get pregnant, my experience would not fit the norm, and I'd still feel like I'm missing out on most of it.
Even if in time, I could accept the idea of a platonic marriage and turn a blind eye to all the risks and disappointments that I'd face being pregnant, the thought of having a child and not be able to care for it, is something I know 100% that I could never cope with. As silly as it might sound, I face (just a taste) the helplessness, depression and frustration I would feel having a child every day, thanks to my miniature pincher, Naama. Although she's just a dog, she's the closest thing I have to a dependent, and for as much joy as she gives me, it kills me watching everyone else care for her. It's indescribable how frustrating and sad it can be to have this, tiny, adorable creature look into my eyes, clearly needing help, or wanting something, and all I can do is sit there, powerless to do anything. Then there's the frustration and jealousy that come along with watching everyone else do the things for her, and enjoy her, in ways that I can't. I want to be able to hold her in my arms, pick her up, play with her, feed her, bathe her, dress her (yes, she wears clothes) and take her for walks, but I can't. Even if she sits on my lap, it's as if she's not there. If I drag my limp hand across her fur (using my shoulders), I can't feel her. For the most part, I'm forced to be a spectator of her life.
I experience similar sadness and frustration on an even larger scale, when I spend time with my nephew and God daughter. There's so much I want to do with them and I can't. I want to be able to scoop them up and give them a bear hug. I want to be able to get messy and do art projects together; things like coloring, sidewalk chalk, finger painting and clay. I want to be able to get down on the floor and build stuff with Legos. I wish I could babysit them, or take them places. Instead, I feel like a talking piece of furniture. I'm just stuck observing them grow and play, and although I can interact with them though words, I feel a huge disconnect to their lives. I know if I were to have a child of my own, all of the feelings I experience now with my pets and the other children that are already in my life would be magnified one hundred fold. I just can't cope with that. So despite my longing for a family of my own, the risks and all missing pieces I'd be unable to experience, vastly outweigh the positives. I know that there are women out there with high level SCIs, that have given birth, and have their own families. Everyone's situation is unique. I can only comment on my own situation, and know what challenges paralysis present me with from day to day, given my background and my unique coping skills. My reality is, that as long as I'm paralyzed, that I will never be able to fulfill my dreams of having a family of my own. That is a hard pill to swallow.
Saturday, December 4, 2010
Updated Link: Soul Survivor
EbruTV updated their website with a new look. I really like the new streamlined, modern look they've created for their site! I worked with them in 2009 on a show they produce called "Soul Survivors." I'm updating all of my social networking sites with the new link. Check out the episode & see me talking about my accident, my experiences living with paralysis and my artwork. Please feel free to leave me feedback & share the link with family and friends! Thanks <3
http://www.ebru.tv/en/genres/LifestyleCulture/soul-survivors/episodes/1/110-christina-symanski
http://www.ebru.tv/en/genres/LifestyleCulture/soul-survivors/episodes/1/110-christina-symanski
Thursday, December 2, 2010
Far From Awesome
My best friend sent me a link to a story about a bride to be, named Rachelle, who was recently paralyzed in a freak accident. She suffered a C6 spinal cord injury, after her best friend pushed her into a pool, at her own bachelorette party. Rachelle was recently interviewed by Meridith Vieira on the Today show, where she talked about her injury, and recovery. They don't mention in the interview, or accompanying article if Rachelle's injury, is complete or not, but given the level of her injury and the amount of recovery she's gained, I'm guessing it is a complete injury. They show her clearly able to push herself in a manual wheelchair, playing wheelchair rugby, and using a universal handcuff to feed herself, which all indicate at least some function in her biceps, triceps and wrists. She mentions having a supportive family, friends & fiance (whom she still intends to marry) and even discusses the fact that neither she or her family blame her best friend. She even goes so far as to calling her current life "awesome" and cites her positive attitude as they key to her recovery, and rosy outlook on life. I commend her for her positive attitude, and will even go as far as saying, she is certainly an inspiration, to anyone, newly injured with a spinal cord injury. However, after living with paralysis for five years now, I'm forced to wonder how long she'll be able to maintain that same zest for life. Her accident, injury, and point in life, at which she was injured, are all very similar to my own experiences, so I can't help but want to compare our situations, and our very different perspectives.
Whenever I come across stories similar to my own, I filled with mixed emotions. On one hand, it's comforting to know that I'm not unique; that there are other people out there, that might truly understand what I'm going through. It's also comforting in the sense that it dulls the overwhelming sense of guilt, regret and astonishment over my own poor judgment. I'm constantly beating myself up over the stupidity of my accident, and forever searching for a motive, or reason behind why I did what I did, and why I'm having to pay such a high price, for one, foolish split section decision. It does help, in a weird way, knowing that I'm not an anomoly, and other people have made the same mistake. On the other hand, it saddens me and disturbs me, to know that there are people out there living with a similar situation, because I know how horrible it can be. There are few people I'd ever wish to be paralyzed, or to live in my shoes, and even then, I'd only ever wish it as a temporary learning experience (politicians and lawmakers come to mind). It breaks my heart, and frustrates me, to know that millions of people have to live with paralysis, because there is no cure. When I think of my own experiences, living with paralysis, my sympathies, outweigh any comfort I gain, from knowing there are people out there just like me.
It's shocking to me, and hard to understand, when I come across people (or read, or hear stories about people) that are living with paralysis, like Rachelle, Joni Eareckson Tada, (the late, Christopher Reeve) or Dr. Dan Gottlieb, that claim to be happy, and living fulfilling lives. Granted, all of the people I listed have mentioned some of the hardships they've faced due to paralysis, but if you read their writing, or articles about them, the majority of what they say is very positive and inspiring. Obviously, I don't know much about Rachelle, except the little I've read online and what she said in her interview. However, I own books written by the other three authors I mentioned, and have followed their stories through videos and writing on the web. Rachelle's case, is especially mind boggling to me, because she is so newly injured. She hasn't even been injured a year, and yet she has seemingly not only has come to grips with an unfathomable amount of change and loss, but appears to be happy and thriving. In comparison, I've been injured for five and half years, and still find day to day obstacles traumatizing. Thinking back to my first year post accident, I can only recall memories of trauma, disappointment, pain, shock and fear. The first year for me, was hell on Earth. Many people that I've read about, or spoken to, admit that it has taken years for them to learn to cope, and/or be able find joy in life with paralysis. I can't even begin to imagine how people like Dr. Gottlieb, or Joni have managed to stay sane, and inspiring, after decades of living with paralysis.
I've come to the conclusion that people like Rachelle, are rare people, who despite insurmountable odds, can somehow find peace, and joy, no matter what life throws at them. I try not to beat myself up for not being able to live up to that standard of inspiration, because I feel it is completely unrealistic, for the average person (myself included). I have to force myself to take a mental step back, and examine the facts. If I were to compare my situation to Rachelle's, for instance, the first major difference I'd have to consider, is the fact that she has functional movement. That is huge! The fact that she has some triceps and wrist control (from what I saw, and her level of injury) means that she can do a lot more for herself. For example, I can't use a manual wheelchair, pick anything up, or really feed myself. Although, those might seem like small victories to the average AB (able bodied) person, each level of function down the spine translates into more freedom and independence, for those of us living with paralysis.
Another huge difference in my situation, versus Rachelle's situation, is the fact that her fiancé is still at her side. The support, or lack there of, of loved ones is critical to anyone's overall mental strength, and stability. The sad truth is, that most relationships don't outlast a devastating, life changing event, like a spinal cord injury (especially, a high level, cervical injury). Most romantic relationships fall apart, friendships fade away, and even family can let you down. There's no telling how people will react to scale of change, and loss that paralysis brings with it, until they are actually faced with it. It takes a massive amount of patience, compromise, and work to live with paralysis. Unfortunately, for those of us who are paralyzed, we have no choice, but to face the situation, for what it is, and try our best to move forward. Family, friends, and significant others, all have the luxury to run away, as heart wrenching as that might be. Many people choose the easy rode, and opt out of the situation, either all together, or at the very least, enough to give themselves a break (a much deserved break- in the case of the people that do choose to continue to be in the person's life, who's suffered the injury). While I have an extraordinary group of friends, and supportive family, my romantic relationship ended up, as most do, and I've had my share of surprising disappointments, with some of the people I least suspected.
I'm not speaking from bitter resentment, or cynicism, I'm just being realistic. I witnessed dozens of people, left behind, during my stay in the nursing home, and rehab, and have read about, or met, countless other people, such as myself, with similar stories. It is the nature of the beast. Paralysis isn't pretty. It is not easy to live with constant compromise. I can't say with certainty, what I'd do if my situation was reversed, but if I had an escape, right now, I'd surely be running. So I don't lay blame, or judge anyone, in my personal circle of loved ones. I do know for certainly, that having that support, especially that of a spouse, or significant other, does make a world of difference. It is a very hard rode to travel, at all, and almost impossible to do it alone. Rachelle should consider herself very lucky. However, the realist in me (or cynic, as some would say) can't help but point out that time will be the true test, especially since it hasn't even been a year since her injury. I only hope her fiancé will prove the statistics wrong.
I often ask myself, if I'm at fault, for not letting myself be happy; if I'm too negative, or too stubborn. I don't think it's wrong, to want more, or to be dissatisfied with my life. Should I just give in, and accept the fact that it should be ok that I have to endure, the things I have to endure on a daily basis? To what end should I compromise, give up, and let go? I don't think it's right that anyone should have to go through the things I do. It's very easy, for those looking in, to suggest being satisfied with having to do everything I ever knew differently, to find enjoyment in the remnants of what's left of the things I used to love to do and to find the strength to cope with the constant invasion to my personal space, and privacy. It's not so easy to do all of those things; at least for me it isn't. I have a feeling, that most of the people that dish out advice, would have difficulty following the things they expect me to do, if they were forced to have to experience my life firsthand. Does that make me a negative person? Is it really negative to see things at face value and call them out, as they are? I don't think so.
There have been many times in my life, since my accident, that people (strangers and friends alike) have called me an inspiration, for moving forward, for painting, and for my writing. I've never tried to be inspiring. Reality is, I have a very limited amount of choices in front of me, and I pick what I can handle, from day to day. One, I can give up all together, which is often very tempting, trust me. Two, I could ignore my past completely, give up on all my dreams (I'm not talking about compromises) and embrace my new life; don't hold your breath. Three, I could put on a show, hide my true feelings and endure in silence, or indulge in sugar coating. Four, I can try my best to compromise and share my experiences, pain and all. Most days I choose number four, because number one would hurt my loved ones, and because I want people to know why a cure should be found.
Whenever I come across stories similar to my own, I filled with mixed emotions. On one hand, it's comforting to know that I'm not unique; that there are other people out there, that might truly understand what I'm going through. It's also comforting in the sense that it dulls the overwhelming sense of guilt, regret and astonishment over my own poor judgment. I'm constantly beating myself up over the stupidity of my accident, and forever searching for a motive, or reason behind why I did what I did, and why I'm having to pay such a high price, for one, foolish split section decision. It does help, in a weird way, knowing that I'm not an anomoly, and other people have made the same mistake. On the other hand, it saddens me and disturbs me, to know that there are people out there living with a similar situation, because I know how horrible it can be. There are few people I'd ever wish to be paralyzed, or to live in my shoes, and even then, I'd only ever wish it as a temporary learning experience (politicians and lawmakers come to mind). It breaks my heart, and frustrates me, to know that millions of people have to live with paralysis, because there is no cure. When I think of my own experiences, living with paralysis, my sympathies, outweigh any comfort I gain, from knowing there are people out there just like me.
It's shocking to me, and hard to understand, when I come across people (or read, or hear stories about people) that are living with paralysis, like Rachelle, Joni Eareckson Tada, (the late, Christopher Reeve) or Dr. Dan Gottlieb, that claim to be happy, and living fulfilling lives. Granted, all of the people I listed have mentioned some of the hardships they've faced due to paralysis, but if you read their writing, or articles about them, the majority of what they say is very positive and inspiring. Obviously, I don't know much about Rachelle, except the little I've read online and what she said in her interview. However, I own books written by the other three authors I mentioned, and have followed their stories through videos and writing on the web. Rachelle's case, is especially mind boggling to me, because she is so newly injured. She hasn't even been injured a year, and yet she has seemingly not only has come to grips with an unfathomable amount of change and loss, but appears to be happy and thriving. In comparison, I've been injured for five and half years, and still find day to day obstacles traumatizing. Thinking back to my first year post accident, I can only recall memories of trauma, disappointment, pain, shock and fear. The first year for me, was hell on Earth. Many people that I've read about, or spoken to, admit that it has taken years for them to learn to cope, and/or be able find joy in life with paralysis. I can't even begin to imagine how people like Dr. Gottlieb, or Joni have managed to stay sane, and inspiring, after decades of living with paralysis.
I've come to the conclusion that people like Rachelle, are rare people, who despite insurmountable odds, can somehow find peace, and joy, no matter what life throws at them. I try not to beat myself up for not being able to live up to that standard of inspiration, because I feel it is completely unrealistic, for the average person (myself included). I have to force myself to take a mental step back, and examine the facts. If I were to compare my situation to Rachelle's, for instance, the first major difference I'd have to consider, is the fact that she has functional movement. That is huge! The fact that she has some triceps and wrist control (from what I saw, and her level of injury) means that she can do a lot more for herself. For example, I can't use a manual wheelchair, pick anything up, or really feed myself. Although, those might seem like small victories to the average AB (able bodied) person, each level of function down the spine translates into more freedom and independence, for those of us living with paralysis.
Another huge difference in my situation, versus Rachelle's situation, is the fact that her fiancé is still at her side. The support, or lack there of, of loved ones is critical to anyone's overall mental strength, and stability. The sad truth is, that most relationships don't outlast a devastating, life changing event, like a spinal cord injury (especially, a high level, cervical injury). Most romantic relationships fall apart, friendships fade away, and even family can let you down. There's no telling how people will react to scale of change, and loss that paralysis brings with it, until they are actually faced with it. It takes a massive amount of patience, compromise, and work to live with paralysis. Unfortunately, for those of us who are paralyzed, we have no choice, but to face the situation, for what it is, and try our best to move forward. Family, friends, and significant others, all have the luxury to run away, as heart wrenching as that might be. Many people choose the easy rode, and opt out of the situation, either all together, or at the very least, enough to give themselves a break (a much deserved break- in the case of the people that do choose to continue to be in the person's life, who's suffered the injury). While I have an extraordinary group of friends, and supportive family, my romantic relationship ended up, as most do, and I've had my share of surprising disappointments, with some of the people I least suspected.
I'm not speaking from bitter resentment, or cynicism, I'm just being realistic. I witnessed dozens of people, left behind, during my stay in the nursing home, and rehab, and have read about, or met, countless other people, such as myself, with similar stories. It is the nature of the beast. Paralysis isn't pretty. It is not easy to live with constant compromise. I can't say with certainty, what I'd do if my situation was reversed, but if I had an escape, right now, I'd surely be running. So I don't lay blame, or judge anyone, in my personal circle of loved ones. I do know for certainly, that having that support, especially that of a spouse, or significant other, does make a world of difference. It is a very hard rode to travel, at all, and almost impossible to do it alone. Rachelle should consider herself very lucky. However, the realist in me (or cynic, as some would say) can't help but point out that time will be the true test, especially since it hasn't even been a year since her injury. I only hope her fiancé will prove the statistics wrong.
I often ask myself, if I'm at fault, for not letting myself be happy; if I'm too negative, or too stubborn. I don't think it's wrong, to want more, or to be dissatisfied with my life. Should I just give in, and accept the fact that it should be ok that I have to endure, the things I have to endure on a daily basis? To what end should I compromise, give up, and let go? I don't think it's right that anyone should have to go through the things I do. It's very easy, for those looking in, to suggest being satisfied with having to do everything I ever knew differently, to find enjoyment in the remnants of what's left of the things I used to love to do and to find the strength to cope with the constant invasion to my personal space, and privacy. It's not so easy to do all of those things; at least for me it isn't. I have a feeling, that most of the people that dish out advice, would have difficulty following the things they expect me to do, if they were forced to have to experience my life firsthand. Does that make me a negative person? Is it really negative to see things at face value and call them out, as they are? I don't think so.
There have been many times in my life, since my accident, that people (strangers and friends alike) have called me an inspiration, for moving forward, for painting, and for my writing. I've never tried to be inspiring. Reality is, I have a very limited amount of choices in front of me, and I pick what I can handle, from day to day. One, I can give up all together, which is often very tempting, trust me. Two, I could ignore my past completely, give up on all my dreams (I'm not talking about compromises) and embrace my new life; don't hold your breath. Three, I could put on a show, hide my true feelings and endure in silence, or indulge in sugar coating. Four, I can try my best to compromise and share my experiences, pain and all. Most days I choose number four, because number one would hurt my loved ones, and because I want people to know why a cure should be found.
I can't envision myself ever being able to compromise on certain aspects of my life, or be able to accept with the compromises that are forced onto me (like having a catheter, bowel regime, or lack of physical intimacy). I want people to know my pain, and see the whole picture of paralysis. I want people, that can otherwise run away, understand the truths that I'm stuck with. I believe it's the painful, ugly, embarrassing aspects of paralysis that impact people, in a deeper way. I mean, if my life were awesome, why would I need help? If paralysis isn't so bad, why bother to cure it? I don't say that, to diminish, or belittle the positive, inspiring people, like Christopher Reeve, or Rachelle. I commend them for their efforts, and am envious of their ability to deal with their lives. I just feel it's important to have balance, and necessary, to educate the public, about all aspects of paralysis, because in the end, no matter how well someone copes, I'm one hundred percent sure, we all would rather be cured.
Related links:
1. Rachelle's story- http://today.msnbc.msn.com/id/40312492/ns/today-today_people/
2. Joni Eareckson Tada- http://www.joniandfriends.org/
3. Dr. Dan Gottlieb- http://www.drdangottlieb.com/
4. Disability & Divorce- http://www.sexualhealth.com/question/read/283/
5. Spinal Cord Injury Levels-http://www.livinghealthcare.net.au/site/DefaultSite/filesystem/images/spinal-nerve-function.jpg
Related links:
1. Rachelle's story- http://today.msnbc.msn.com/id/40312492/ns/today-today_people/
2. Joni Eareckson Tada- http://www.joniandfriends.org/
3. Dr. Dan Gottlieb- http://www.drdangottlieb.com/
4. Disability & Divorce- http://www.sexualhealth.com/question/read/283/
5. Spinal Cord Injury Levels-http://www.livinghealthcare.net.au/site/DefaultSite/filesystem/images/spinal-nerve-function.jpg
Monday, October 11, 2010
Gadgets, Gizmos & Technology
I recently read (and posted) an article about Berkley Bionics new "eLEGS" exoskeleton, for paraplegics. I'd heard of, and seen similar prototypes on television shows ( mostly on the Science channel), discussing futuristic military equipment and upcoming medical technology, in addition to this particular article. Being an avid anime fan and science fiction geek, means I'm no stranger to the concept of bio-tech gadgets, likemecha suits, holobands, exoskeletons, android, robotic and avatar like devices. Science fiction is becoming fact, for many of these types of devices. We've begun mixing man with machine, in order to enhance our abilities, entertain and excite our senses, as well as return function, to those who have lost abilities, due to injury, or disease. While I view these technologies as helpful, and interesting, I tend to get frustrated and resentful at the thought of having to rely on machinery, instead of my own physiology. It's one thing to use gadgets for enhancement, or excitement, like video games, simulators, sensory stimulation (like HD tv, surround sound & 3D movies), or even rides. It's entirely different to be dependent on machinery, to move, feel, or function. While I'll admit, it's a first step (no pun intended) towards regaining function, I see gadgets as temporary compromises, and have a limited amount of enthusiasm towards them. Machines are just one more compromise, in a life already saturated with compromises, modifications, adjustments and having to settle, with what I have.
If you're not into gadgets, and technology, you'd probably be amazed to know some of the current technologies that we already process, and/or that are being developed in the here and now. I've seen pacemaker like devices, to assist in breathing (Christopher Reeve used this technology). There are devices that allow people to remotely control their limbs, bowel, bladder, and sexual function. I've also seen devices that actually "plug-in" to a persons brain, to allow them to operate a computer. There are devices that use eye movements to control computers, or machines. There's also a company out there that has developed a gaming system that is controlled by headgear, which recognizes various electrical impulses sent out from the brain. I even saw a prototype for a body suit that can receive sensory stimulation, meant to be worn and connected to the computer, which partners could use to send sensory signals to one another (essentially taking virtual intimacy to whole new level). I find technology, machines and computers fascinating, and enjoy reading and watching about them. However, for as much as I'm intrigued by mechanical engineering and technology, I'm equally frustrated by it. I feel as though machines both liberate and limit us, and get frustrated by the amount of time, energy, money, and brain power that our society invests in them. In the end, what good are machines, if there is no one is able to use them. Why focus on machinery, instead of our own bodies? Shouldn't we discover how we work first? Shouldn't we unravel all the mysteries of ourselves first? I think more emphasis needs to be put on humanity and health. Let's understand how to work with the biology we were born with, and how to fix it, instead of settling for compromises, or worrying about enhancements.
It boggles my mind how much money and time is spent on trying to find answers to questions of curiosity or weapons of destruction. Most space exploration is a huge waste of resources, in terms of practical, tangible knowledge, yet we spend BILLIONS each year on it. Although it's tantalizing to think of discovering other Earth like planets (none of which we have -even remotely close- the technology to actual reach in a single lifetime), or microorganisms deep inside the water, that may, or may not be beneath Jupiter's moon's surface, none of it is practical information. What benefits can humanity hope to gain through this type of research? How can we apply the information we learn from the billions being spent on projects like exploring Europa (Jupiter's moon)? The answer is, we can't. The type of life we hope to find in space is either too far away to reach, or so insignificantly small, that it has nothing to offer us, other than quenching our thirst for knowledge. Sure, there's a ton of interesting mysteries in our universe that are worth answering, but to what extent? Doesn't it seem logical to prioritize our time and energy, and first unravel the mysteries of our own bodies, ourselves? Why is it acceptable that we can't fix the spinal cord, but we can justify diverting resources to building weapons, exploring deep space, or building better gadgets? Shouldn't we ask ourselves how the things we do impact life; how they can improve the quality of life? I don't think it's just, that in the year 2010 people are still suffering with ailments like paralysis and cancer, which have plagued humanity for centuries (probably forever, but we didn't have the technology to detect or manage them). It's alarming to me, that geniuses, like Steven Hawking (especially ironic, in his case, in particular) prefer to use their incredible minds to answer fascinating, yet often low priority riddles, in terms of the concrete impact the information they gather has on everyday life. Don't get me wrong, I know quantum physics and associations like CERN, and NASA do offer us with some practical applications, like satellites, GPS, nuclear fusion, etc.. Unfortunately, a large bulk of effort is spent on impractical priorities, like searching for extraterrestrial life, "God particles," and explanations on dark matter. That's all well and good, but can't we worry about that stuff AFTER we figure out ourselves?
Another reason why I'm not personally jumping for joy (figuratively, of course) about this new technology, is that the Berkley Bionics exoskeleton is designed for paraplegics. You need to have a functioning upper body in order to operate it, which I don't. It's touted as being relatively lightweight in design (compared to similar prototypes), although it includes a leg/foot cast apparatus, two arms poles and a backpack (which I'm assuming is the battery). It looks bulky and cumbersome to me, however let's face it, a wheelchair is no better. The device requires the user to be able to transfer his/her lower extremities into the device, fasten all the straps, put on the backpack, and grab onto the arm poles, all before even being able to stand up. Even so, if I had a functioning upper body, I'd gladly trade in my set of wheels for a suit, regardless. The health benefits of wearing the exoskeleton far outweigh any hassles, that will surely come along with using it. Being able to bear weight on your bones is crucial. After five years of sitting, I'm sure my bones are equivalent to those of a ninety year old woman. Being able to walk , upright also has countless other medical benefits for circulation, and digestion. Despite the bulkiness and awkwardness of having to strap on so much paraphernalia, I'm sure users will have more confidence and self worth, as compared to rolling around it a chair. The one woman quoted in the article, mentions that fact. I own a tilt table, which allows me to bear weight on my bones, but it's no where near as helpful as actual locomotion. Not to mention, in a tilt table, or standing frame, you're strapped in and stationary, so you can't really interact with the environment in any productive sense. Since I have no functional upper body control, my trunk is to weak to remain upright, so it must be strapped down, to avoid me from falling forward. Plus, I have no functional arm/hand control, which makes interacting with my environment a mute point. For paraplegics however, this type of technology is very exciting. It would give people with lower extremity paralysis back much more independence, and dignity. If you watch the video demonstrations of her using the exoskeleton, you see her being able to stand eye level with her best friend, and be able to embrace her, standing up. The medical and therapeutic possibilities are amazing, but things like being able to stand next to a loved one, and hug them are priceless.
Like I said earlier, it's a stepping stone, to giving people back their independence and self confidence.Gadgets are ok, but they'll never be as good as the body I was born with. All the machines in the world can not replace all that paralysis takes away. Having to rely on a machine, is not that much better than having to rely on another person. Dependence, is dependence, no matter how you slice it. Reliance on machinery is a step up from relying on people, because it gives us the illusion of more control, and gives us a boost of confidence, in having the dignity of privacy to handle matters ourselves. However, machines have their own limitations and obstacles. The fact that the exoskeleton will rely on electricity is a key example of limitations. Yes, the user will have more control over assuring that they charge the battery, or have backups. You can control maintenance on a machine, and have reliable back up plans, more so than the unpredictability or control over a human aide. However, machines will only ever be a compromised version of our "God given" abilities. Another example of this is the fact that users of the exoskeletons will be able to walk, but will not be able to feel. The exoskeleton will give paraplegics back locomotion, but not sensation. The exoskeleton will not solve the second biggest (or first most, depending on your point of view) problem of paralysis, which is the lack of feeling. Users will be able to take a step, but unable to feel their feet touching the ground. The exoskeleton solves the problem of getting around, but doesn't even begin to address other aspects of paralysis: incontinence, sexual function, pain and/or numbness. The exoskeleton has a much greater potential to help newly injured people, retain abilities, while the body still possess muscle memory, but will not be able to address those concerns, in people that have been paralyzed for years. That is why, the best "cure" or solution, is always going to be, first and foremost, the reparation of the spinal cord itself. There is just no equal substitute to the biological wiring within our own bodies. That is where the great majority of the research, time and energy needs to be. It'll be nice for some people to get around, in the interim, but please, just give me back my body. I'm happy for those people that will benefit from this technology, and agree that every little bit helps. I'll use whatever I can, to improve my independence, but all I want is my own body. It's not enough to just go through the motions. I don't just want to move; I want to FEEL. I want to be able to truly experience every aspect of walking again. That's part of what's so hard about a spinal cord injury; it's that I KNOW what it's like to run, dance, walk, swim, and ride a bike. I remember what I'm missing, and I want it ALL back. I want to be truly independent, and not have to worry about having to buy replacement parts, rely of batteries, on mechanics to live my life. I want people to see the whole picture, and think about what counts most. Let's focus on the core problem and refocus priorities to the most basic of human necessities, health and independence. Granted, figuring out how to control and repair the central nervous system is highly more complex, than building machines, I get that. However, shouldn't that be all the more reason, for pushing for MORE support, and extra emphasis, on solving the REAL problem?
Related links:
1. Exoskeleton- http://www.wired.com/gadgetlab/2010/10/berkeley-bionics-elegs/
2. Exoskeleton- http://www.disabledandproductive.com/blog-posts/rewalk-system-helps-paraplegics-walk-again/
3. Brain Connection- http://www.sciencecodex.com/the_brain_speaks
4.Incontinence- http://www.gizmag.com/go/7276/
5.Breathing Pacemaker- http://www.averylabs.com/breathing-pacemakers/introduction.html
6. Mind Control- http://www.wired.com/wired/archive/13.03/brain.html
7. Cyber Sex- http://www.pcmag.com/article2/0,2817,36076,00.asp
8. Futuristic Gaming- http://news.bbc.co.uk/2/hi/technology/7254078.stm
If you're not into gadgets, and technology, you'd probably be amazed to know some of the current technologies that we already process, and/or that are being developed in the here and now. I've seen pacemaker like devices, to assist in breathing (Christopher Reeve used this technology). There are devices that allow people to remotely control their limbs, bowel, bladder, and sexual function. I've also seen devices that actually "plug-in" to a persons brain, to allow them to operate a computer. There are devices that use eye movements to control computers, or machines. There's also a company out there that has developed a gaming system that is controlled by headgear, which recognizes various electrical impulses sent out from the brain. I even saw a prototype for a body suit that can receive sensory stimulation, meant to be worn and connected to the computer, which partners could use to send sensory signals to one another (essentially taking virtual intimacy to whole new level). I find technology, machines and computers fascinating, and enjoy reading and watching about them. However, for as much as I'm intrigued by mechanical engineering and technology, I'm equally frustrated by it. I feel as though machines both liberate and limit us, and get frustrated by the amount of time, energy, money, and brain power that our society invests in them. In the end, what good are machines, if there is no one is able to use them. Why focus on machinery, instead of our own bodies? Shouldn't we discover how we work first? Shouldn't we unravel all the mysteries of ourselves first? I think more emphasis needs to be put on humanity and health. Let's understand how to work with the biology we were born with, and how to fix it, instead of settling for compromises, or worrying about enhancements.
It boggles my mind how much money and time is spent on trying to find answers to questions of curiosity or weapons of destruction. Most space exploration is a huge waste of resources, in terms of practical, tangible knowledge, yet we spend BILLIONS each year on it. Although it's tantalizing to think of discovering other Earth like planets (none of which we have -even remotely close- the technology to actual reach in a single lifetime), or microorganisms deep inside the water, that may, or may not be beneath Jupiter's moon's surface, none of it is practical information. What benefits can humanity hope to gain through this type of research? How can we apply the information we learn from the billions being spent on projects like exploring Europa (Jupiter's moon)? The answer is, we can't. The type of life we hope to find in space is either too far away to reach, or so insignificantly small, that it has nothing to offer us, other than quenching our thirst for knowledge. Sure, there's a ton of interesting mysteries in our universe that are worth answering, but to what extent? Doesn't it seem logical to prioritize our time and energy, and first unravel the mysteries of our own bodies, ourselves? Why is it acceptable that we can't fix the spinal cord, but we can justify diverting resources to building weapons, exploring deep space, or building better gadgets? Shouldn't we ask ourselves how the things we do impact life; how they can improve the quality of life? I don't think it's just, that in the year 2010 people are still suffering with ailments like paralysis and cancer, which have plagued humanity for centuries (probably forever, but we didn't have the technology to detect or manage them). It's alarming to me, that geniuses, like Steven Hawking (especially ironic, in his case, in particular) prefer to use their incredible minds to answer fascinating, yet often low priority riddles, in terms of the concrete impact the information they gather has on everyday life. Don't get me wrong, I know quantum physics and associations like CERN, and NASA do offer us with some practical applications, like satellites, GPS, nuclear fusion, etc.. Unfortunately, a large bulk of effort is spent on impractical priorities, like searching for extraterrestrial life, "God particles," and explanations on dark matter. That's all well and good, but can't we worry about that stuff AFTER we figure out ourselves?
Another reason why I'm not personally jumping for joy (figuratively, of course) about this new technology, is that the Berkley Bionics exoskeleton is designed for paraplegics. You need to have a functioning upper body in order to operate it, which I don't. It's touted as being relatively lightweight in design (compared to similar prototypes), although it includes a leg/foot cast apparatus, two arms poles and a backpack (which I'm assuming is the battery). It looks bulky and cumbersome to me, however let's face it, a wheelchair is no better. The device requires the user to be able to transfer his/her lower extremities into the device, fasten all the straps, put on the backpack, and grab onto the arm poles, all before even being able to stand up. Even so, if I had a functioning upper body, I'd gladly trade in my set of wheels for a suit, regardless. The health benefits of wearing the exoskeleton far outweigh any hassles, that will surely come along with using it. Being able to bear weight on your bones is crucial. After five years of sitting, I'm sure my bones are equivalent to those of a ninety year old woman. Being able to walk , upright also has countless other medical benefits for circulation, and digestion. Despite the bulkiness and awkwardness of having to strap on so much paraphernalia, I'm sure users will have more confidence and self worth, as compared to rolling around it a chair. The one woman quoted in the article, mentions that fact. I own a tilt table, which allows me to bear weight on my bones, but it's no where near as helpful as actual locomotion. Not to mention, in a tilt table, or standing frame, you're strapped in and stationary, so you can't really interact with the environment in any productive sense. Since I have no functional upper body control, my trunk is to weak to remain upright, so it must be strapped down, to avoid me from falling forward. Plus, I have no functional arm/hand control, which makes interacting with my environment a mute point. For paraplegics however, this type of technology is very exciting. It would give people with lower extremity paralysis back much more independence, and dignity. If you watch the video demonstrations of her using the exoskeleton, you see her being able to stand eye level with her best friend, and be able to embrace her, standing up. The medical and therapeutic possibilities are amazing, but things like being able to stand next to a loved one, and hug them are priceless.
Like I said earlier, it's a stepping stone, to giving people back their independence and self confidence.Gadgets are ok, but they'll never be as good as the body I was born with. All the machines in the world can not replace all that paralysis takes away. Having to rely on a machine, is not that much better than having to rely on another person. Dependence, is dependence, no matter how you slice it. Reliance on machinery is a step up from relying on people, because it gives us the illusion of more control, and gives us a boost of confidence, in having the dignity of privacy to handle matters ourselves. However, machines have their own limitations and obstacles. The fact that the exoskeleton will rely on electricity is a key example of limitations. Yes, the user will have more control over assuring that they charge the battery, or have backups. You can control maintenance on a machine, and have reliable back up plans, more so than the unpredictability or control over a human aide. However, machines will only ever be a compromised version of our "God given" abilities. Another example of this is the fact that users of the exoskeletons will be able to walk, but will not be able to feel. The exoskeleton will give paraplegics back locomotion, but not sensation. The exoskeleton will not solve the second biggest (or first most, depending on your point of view) problem of paralysis, which is the lack of feeling. Users will be able to take a step, but unable to feel their feet touching the ground. The exoskeleton solves the problem of getting around, but doesn't even begin to address other aspects of paralysis: incontinence, sexual function, pain and/or numbness. The exoskeleton has a much greater potential to help newly injured people, retain abilities, while the body still possess muscle memory, but will not be able to address those concerns, in people that have been paralyzed for years. That is why, the best "cure" or solution, is always going to be, first and foremost, the reparation of the spinal cord itself. There is just no equal substitute to the biological wiring within our own bodies. That is where the great majority of the research, time and energy needs to be. It'll be nice for some people to get around, in the interim, but please, just give me back my body. I'm happy for those people that will benefit from this technology, and agree that every little bit helps. I'll use whatever I can, to improve my independence, but all I want is my own body. It's not enough to just go through the motions. I don't just want to move; I want to FEEL. I want to be able to truly experience every aspect of walking again. That's part of what's so hard about a spinal cord injury; it's that I KNOW what it's like to run, dance, walk, swim, and ride a bike. I remember what I'm missing, and I want it ALL back. I want to be truly independent, and not have to worry about having to buy replacement parts, rely of batteries, on mechanics to live my life. I want people to see the whole picture, and think about what counts most. Let's focus on the core problem and refocus priorities to the most basic of human necessities, health and independence. Granted, figuring out how to control and repair the central nervous system is highly more complex, than building machines, I get that. However, shouldn't that be all the more reason, for pushing for MORE support, and extra emphasis, on solving the REAL problem?
Related links:
1. Exoskeleton- http://www.wired.com/gadgetlab/2010/10/berkeley-bionics-elegs/
2. Exoskeleton- http://www.disabledandproductive.com/blog-posts/rewalk-system-helps-paraplegics-walk-again/
3. Brain Connection- http://www.sciencecodex.com/the_brain_speaks
4.Incontinence- http://www.gizmag.com/go/7276/
5.Breathing Pacemaker- http://www.averylabs.com/breathing-pacemakers/introduction.html
6. Mind Control- http://www.wired.com/wired/archive/13.03/brain.html
7. Cyber Sex- http://www.pcmag.com/article2/0,2817,36076,00.asp
8. Futuristic Gaming- http://news.bbc.co.uk/2/hi/technology/7254078.stm
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