Autonomic Dysreflexia, or Not Autonomic Dysreflexia?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


- Posted using BlogPress from my iPad

Questioning Life & My Options

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

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. 

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). 

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.

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.

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. 

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

Response to Feedback: I'm Not Doing So Good :(

Thank you for your responses to my previous blog ("I'm Not Doing So Good"). My blogs post onto several sites, from Blogger.com so I thought it'd be easiest to post this here, as a separate blog entry. That way I can reply to everyone that left me feedback in one place, versus posting a bunch of separate comments. Besides, I tend to write too much to be accepted in the normal "comment" boxes. >.<

I'm not even sure what I'm looking for, in terms if advice. I realize that words can only do so much. I was forced to see a therapist, when I lived in the nursing facility, and often considered it more of an annoyance, than a help. Partly because, I had an AB (able bodied) person sitting across from me, giving me advice. It was infuriating at times, and I couldn't help but think, "Easy for you to say. You get to punch out and leave all this sadness behind at the end of the day. You get to go home to your normal life and care for yourself. You have the freedom to pick up and do things, as you please and the independence to do things for yourself. How on earth can you even begin to empathize with me, or have the audacity to tell me what I should do!" I've been trying my best to cope with everything, in my own way and rely on medicine to take away some of the overwhelming thoughts, or sadness. Unfortunately, my way doesn't seem to be working anymore and I feel myself sliding down, deeper and deeper into a dark hole.

There are times when I think, "Enough is enough. I've tried my best. It's not fair for other people to expect me to live this way. If my loved ones could (anyone for that matter) live a few days in my shoes, they'd understand and willingly let me go." On the other hand, I feel like giving up would just be another failure. I beat myself for my accident, and already feel as though I've ruined my life. To give up, on top of the mistake of my accident, sometimes makes me feel like I'd be an even bigger disappointment, than I already am (to myself, if no one else).

Then there's the fear of the unknown and what consequences would await me, if I gave up my will to live. I don't have a strong belief in any particular faith, and although I've been actively searching (and praying) for a relationship with God (if he, or she, or they exist), but have yet to find any answers. Faith isn't something anyone else can instill in me; if that were the case, I'd be a devout Catholic. I feel as though a faith in God would give me strength and inner peace, in believing that there really is some bigger purpose, or plan, and some sort of justification, for all of my pain. I think a faith in God would also give me the peace of mind that there's something better waiting for me, when I die. Without a heaven, it seems so pointless to even try. I mean, why prolong my suffering, just to die and go into non-existence? Then again, if there is a heaven, what am sitting around for? Why stay here, if I could be happy on the other side?
These are all questions that no one can answer for me.

The unknown adds a lot of stress, because it leaves me full of doubt, and guilt, over making choices. In a way, my accident drained me of confidence in my ability to make good choices. After five and a half years of suffering with the consequences, of one stupid, split second decision, it terrifies me to think that, giving up could be viewed as the wrong choice. It probably sounds silly, to some, but  I'm terrified of screwing up my afterlife (if there is one), as horribly as I've already done with my life. Don't get me wrong, I'm not saying Im a horrible person. Actually, I think I'm a pretty good person. I was a good student, hard worker, law abiding citizen, generous and kind person. However, my accident is proof, to me, that none of that matters, if the mistake you make is bad enough. It's a philosophical/theological dilemma, that only adds to my confusion and stress, about my current situation. The lack of a relationship, or true belief in God, also adds to my overwhelming sense of emptiness, and loneliness. In a way, it feels like the ultimate rejection. Here I am, reading books (of many different ideologies), holy scriptures, praying and begging, with all my heart and soul, and all I get in return is silence and more of the same old stuff.

The unknown of the future is stressful as well. When I first got hurt, I believed strongly in a cure. I was hearing and reading researchers talk about all sorts of promising research. The timespan of "five to ten" years, that I heard countless times, seemed tolerable. I can remember laying in bed, at Kessler rehab, saying to two of my best friends, "Even if it takes a full ten years, I'll only be thirty-five. I'll still be young enough to do everything I want to do." Yet, here we are, five years later, and most of what I've read and heard has been disappointment after disappointment. President Bush vetoed the ESC bill, making research in that field slow to snail's pace. The CDRPA, that could've boosted support for research in many areas of spinel cord injury research, was held up in the Senate for years. Even now, there's a fight to overturn President Obama's support for research. Ironically, some of the most important, promising initiatives to support research for a cure, have been bogged down, by the selfishness and ignorance of only a few individuals. It makes me want to scream, and lash out, for every AB person to hear. I want every AB person to see and feel my pain, and understand why a cure matters. I wish there were a way to have selfish individuals (like the most recent road blocker, Judge Royce Lamberth) experience one week of living with quadriplegia, not to gloat in their suffering, not for revenge, but for understanding. I'm 100% positive that one week (without knowing if, or when a cure would be found) would be enough to inspire anyone to support research. The lack of a cure, or evidence of even a remotely close cure, that I could give me back my independence, has chipped away at my hope over time. I currently, have very little hope left, for any cure that could benefit me, in my lifetime.  

My spinal cord injury has given me a perspective on life, that allows me to see the most basic, most important, most valuable aspects of life, that most people take for granted. Unfortunately, the majority of people are blinded by money, power, material possessions, and pride, and have lost the ability to see the obvious order of what their priorities should be; priorities that value the living, improve quality of life and focus on helping others. Either that, or people are so self absorbed, that they can't see the suffering around them, or don't care, until it directly effects their lives. The irony is, anyone can be injured, at anytime. Life can change in the matter of seconds. Just because you are healthy, and on your feet today, is no guarantee that tomorrow you won't be living life in a wheelchair. Finding a cure to paralysis should be among the top priorities for all humanity, not just those of us living with paralysis, at this moment. That's why my message, is almost always aimed at the average AB person. I'm in no way a role model, and have too many struggles, to presume I can give much coping advise to other disabled people. I just want to open AB people's eyes and minds, to what it means to live with paralysis. I'm crying out, "Look at me! Look at what I have to go through everyday. Help me!" I want the average person to look at my situation, and really have it sink in, that I could be anybody; that they could be me.    

As far as writing goes, thank you for your compliments. Writing has always been helpful for me. I've kept journals, on and off, since I was eight. I've thought about pursuing bigger writing goals, like writing a book. I've even started working on a book, several times. I tend to hit a wall, when I have to dredge up the really painful stuff, and as time goes on, my memories are getting blurry (regarding details of the first couple of years post accident). Lately, I've been so depressed, that writing itself, has become painful. Having to focus on my thoughts and write them down, has been making me want to switch gears, find distraction and ignore my feelings. Writing my thoughts down forces me to shine a light on a lot of the things I've been trying to avoid thinking about. My iPad has given me some more freedom, to write at various times of the day, so sometimes I can jot down small pieces of what I'm going through. The ability to be more spontaneous helps. I uploaded the Dragon dictation app recently and I'm waiting for a new headset with built in mic to be delivered. Being able to blurt out my thoughts, might help, because it won't take as much effort to type and therefore, give me less excuses to avoid sharing. As embarrassing as it can be sometimes, I feel it is important for me to put myself (through expressing my feelings) out there. I think people are more likely to help, if they can put a face to a problem. I'm not just an example in a book. I'm living, breathing, and feeling, and can give a personal perspective of paralysis, that a medical definition, or diagnosis, fails to give. I'm trying my best, that's all I can do.  

Not Doing So Good :(

I haven't been doing too well, for some time now. My physical health hasn't been the greatest, which I'm sure has played its part in my overall decline. As many of you know, from reading my blogs, or living with paralysis yourselves, I have to deal with a certain amount of medical issues, on a weekly basis, that I struggle with, greatly. Even after five years of being injured, I've still yet to come to terms with needing help with personal hygiene & bathroom issues. I've yet to find a way, to "just deal" with having another adult shower me, dress me, and feed me. Worst of all, is the need for a catheter, bowel regime and constant fear of incontinence. They all bother me just as much as they did when I first got hurt. I try my best to block it all out, but instead of getting easier, it's becoming increasingly more difficult. Part of the reason, may be because, as time goes on I've had to deal with more & more related health issues, that are just wearing me down. I've had countless UTIs (despite trying to stay hydrated, taking various medications & attempting to be as sterile as possible), most of which, I've tried to tough out, without antibiotics, because they often render my bowel regime useless, which is ultimately more upsetting&can cause skin breakdown. There are times though, when I'm just too sick to ignore and either land myself in the hospital, or force me to breakdown and ask for an antibiotic. Even that is a hassle, because half the time, the laboratories kick back my specimen, without culturing it, because they think it's contaminated. Apparently, I live with a pretty outrageous amount of bugs in my system, because even though we explain it's from a catheter, I've had more than one lab reject my samples. So then, I'm stuck with taking an antibiotic that may, or may not clear up the infection, and the wonderful stress, of worrying about accidents. This is all on top of the dozen or so pills I take on a daily basis, just to stay somewhat functioning (mostly bowel & bladder related, with a couple anti-depressant, anti-anxiety meds).


Yesterday, I spent all day at the hospital for a UTI. I just took an antibiotic called Leviquin, about three weeks ago, that obviously didn't work. They took blood & urine, gave me a ridiculously strong IV antibiotic& a prescription. I was in the ER for about seven hours (two of which, were just spent waiting for an ambulance ride back to my apartment). The whole time, I'm trying my best not to freak out, or have a panic attack, because my absolute worst fears & experiences all revolve around the hospital. I spent the first year & a half, after my accident living in Robert Wood Johnson ICU, Kessler rehab, ST. Barnabas ICU, Cheshire nursing home, Morristown Memorial hospital and then back to the nursing home. Despite having daily visitors, most of the time, the large majority (mostly at night) was spent painfully, and terrifyingly, alone. I can't even begin to describe the loneliness, fear and sadness that I experienced, most nights. At times, I was literally at the brink of death, most times, just overwhelmed with loss and fear. I doubt anyone, has pleasant hospital memories, however, being hospitalized and totally paralyzed, feels like hell on earth. You are 100% at the mercy of the hospital staff, especially when you can't even hit a call bell, reposition yourself, get a drink, change the tv channel, work the bed controls, pick up the phone, or any other small comfort, that the average person can do. Plus, thanks to HIPA, I end up having to re-explain that I'm paralyzed, almost every time someone besides my nurse, or doctor enters the room. Honestly, I rather have staff read my chart, than have to explain why I can't make a fist, or raise my arm, or any other stupid thing. Even when I have family, or friends with me, I feel scared and lonely. I just want to be home, and I'm dreading the time when they'll have to inevitably leave me behind. The few times people stayed overnight with me, I still knew they'd eventually have to leave. Plus, I felt horrible, because I knew how uncomfortable & exhausted they must have been, trying to comfort me. As crazy as it might seem, I couldn't even watch a tv show or movie about the hospital, without feeling panicked. Although, thankfully, I haven't had to stay over night in the hospital, since I've been home, the fear is always there. Horribly, in the end, with or without visitors, I often still feel alone.


Short of having a person climb into bed with me, it's hard for me not feel alone. I can't feel people holding my hand. I can't feel much of anything. Other people with paralysis and therapists have said stuff like,"You can still feel your head, neck and shoulders.You can learn to substitue affection to the areas you can feel" and/or "intimacy is mostly in the mind." For me, paralysis has been extremely isolating and I feel extremely deprived. Not only do I feel emotionally cut off (because most people have no clue what it's like), but physically, alone. I so often, feel like I just want to be held and be able to embrace the person back. Not that a hug would really solve anything, I feel such a void in my life. A big part of that emptiness, is not having a signifigant other. Family and friends can only do so much, and although I love them and am tremendously thankful for the people in my life, there is ahuge, gaping emptiness inside of me. I miss having that other half, to hold me and make me feel safe. It's a different type of love and affection, and it's been lacking in my life for a very long time now. Sometimes, I feel as though, I'd be stronger and feel as though I would have more purpose, if I had a husband in my life. At the end of the day, my friends& family, all have their own lives, and I feel completely lost and empty. Part of my problem, is that I honestly still love my ex (the person I was with, when I was hurt) and our break-up isn't something I've been able to get past. Mostly because, we both feel like we'd be together, if I were never hurt. All my dreams were ripped out from underneath me overnight, and being with him was one of those dreams. The events that followed my accident, made it impossible for our relationship to work, and although I have no way of knowing how my life (or our relationship) would've turned out, up until this point, the abruptness of how it all ended, makes it unbearably difficult to move forward.


As unbearable as it's been without him, I'm full of doubts within myself as well. I don't know that I'd have been able to be there for him, if our situations were reversed, and that's an ugly reality, I didn't want to admit to myself. You think that love should be enough, but the reality is, that each case is unique and you really can't judge anyone, unless you've been in their shoes. Part of me feels like, if he truly loved me, we'd somehow be together. Another part of me says, I'm not sure how I'd handle it myself (in his shoes or even now, in my position). I don't really know how I'd deal with having a romantic relationship, on top of all of this. There's so much of my life, I'd want to shield, or hide, that I couldn't. I only know what I had, and recognize, it wouldn't be the same. Regardless of who I'd be with, the thought of letting anyone into my life in that way, both terrifies me and leaves me feeling very skeptical. Why would anyone want to willingly choose, to take on all the hardships that come along with my life? I'm trying so hard to run away from them myself, so why would anyone welcome them? Plus, there's my overwhelming sense of guilt, that I could never contribute even a fraction of what that person could. Also, there's my want to be with someone that's able bodied, because otherwise, I feel as though, it's just another friendship. How can I expect someone else to want something I don't even want for myself? Part of me feels like a bad person, for not being able to see past all the physical, but it's so much of the physical, nurturing aspect of a relationship, that I feel so lacking and that I miss.


My failed relationship with my ex, is just one of many hugely important goals/dreams that I've struggled with since my accident. There's the career I worked so hard for, achieved, then lost. Then, there's the dreams of marriage and children, I've had since I was a little girl; on top of ordinary goals, like owning a home, playing an active role in helping family & friends and common milestones. For the past five and a half years, I've been watching all of my friends accomplish the things I thought I'd have (and still desperately want). Every day, I see painful reminders of what I could've had, but ruined. It's not to say, I absolutely couldn't teach, get married, or even have children, in my condition. What most people fail to see, or understand, is that the aspects of' those dreams that I most looked forward to experiencing, would be gone. I can no longer do most of my favorite parts of my job, which include, the physical interaction with the materials, the hands on working & demonstration with the kids and the physical tasks of organizing, showing, managing and doing. Yes, the ideas are still there, but so much of what I loved, was making those ideas into reality. It's the kinesthetic, tactile sensations that I love most about art, and most of that is gone. Marriage and children, come with a ton of experiences that I'd completely miss out on. It kills me, to think I'll most likely never experience most of the things I've dreamed of my entire life. The compromises just seem so pale in comparison. I've looked forward to all the traditions of marriage, not just the piece of paper. I want to go try on wedding dresses in front of a million full length mirrors, WALK down the isle arm & arm with my dad, dance my wedding song with my husband, be carried through the threshold the night of my wedding, and make tons of love on my honeymoon. I've been dreaming, and wondering ever since I was a little girl, what it'd be like to be pregnant, feel my baby growing inside of me, having my husband rub my belly, decorate the nursery, go into labor, hold my baby in my arms, and breast feed. If I had a child, I looked forward to bathing it, feeding it, dressing it, rocking it to sleep and keeping it safe. I don't know that I could handle all the compromises and being a spectator. It breaks my heart, just thinking about it.


I've been struggling with all of these issues, since day one (June, 5, 2005). Instead of getting easier to cope, it's gotten harder and harder. Every year that passes, seems like a year lost, a dream gone forever. Every day that passes without a breakthrough, or a cure, it seems less hopeful. Every politician's decision or governmental set back to funding, seems like a punch to my face, like a personal attack. When people fight over research, it makes me feel so insignificant and worthless. How can people value cells, already predestined for the trash, more than me; a living, breathing, suffering, citizen? Why is there hardly any money or time to find a way to repair the spinal cord, but plenty of time and money, for war and exploration of other planets? Why is it ok for me to have to live this way? Why do so many people do foolish things, and/or even mean, horrible things, but get to spend full, healthy lives? It's getting to feel to be too much, too overwhelming, more hopeless, emptier, unbearable.


I've talked to my doctor about changing my anti-depressant medication, in hopes of helping me regain some ability to cope. I'm at the point where I feel as though nothing is taking off the edge, nothing is distracting enough. I feel awful, sad, lost, scared and lonely. I know I have people around me that worry,care about me and support me. Nothing is enough, and I feel helpless and horrible and don't want to feel this way. I'm skeptical of how much difference a pill will make, or even what talking about it can do. Nothing, short of fixing my spine can really serve as a solution, but I feel as though I've hit a wall. I feel worn out and at a loss for how to keep going forward, by just continuing what I've been doing up until now. I feel as though, I'm quickly unraveling, and it terrifies me. Asking for help scares me, but saying nothing scares me more. It's especially hard finding (or believing) anyone that really understands what I've beenthrough and what I'm going through. Many of my disabled friends/acquaintances are men, and I feel lack the ability to truly understand my perspective. I'm always concerned my honesty will upset the people that love me, and therefore hold a lot back. I'm at a point, where I feel I must speak up, to keep what sanity I have left. I don't even know how anyone can really help me. I know part of me, should just force myself to go forward, and do things, despite my lack of drive, or desire, but then I start to wonder who I'm really forcing myself for. Do I really want it for myself, deep down, or do I just not want to further disappoint myself & loved ones; but at what cost? My mind is currently just a chaotic mess of mixed emotions, sadness, frustration and fear and I'm desperate for some real solutions, if there are any.