It's hard to explain (more than I've already spelled out in my blog about IBS), why a colostomy would be so horrible. I recently posted my last blog (about my decision to no longer take antibiotics, and creating a DNR) on the Care Cure Forums. Many of the men on there responded, in bewilderment over why I'd rather die, than get a colostomy, which could possibly alleviate some of the AD symptoms, which plague me, on a daily basis. For me, the question boils down to "quality" versus "quantity" of life. In my mind, based on my standards, for myself, my personal struggles, preferences, and wants, getting a colostomy would not improve MY definition, of a quality life, it would lower it. Given my current situation, and the way I define quality, for myself, the bar is already set very low, because of my extreme paralysis. Getting a colostomy MIGHT (let's keep in mind there's no guarantee) alleviate some of my physical suffering, but I am CERTAIN it would add to my emotional suffering. The decision NOT to get a colostomy, is a no brainer for me, for many, many reasons. It has been one of the two things I have absolutely refused to consider (that and a tracheotomy), since day one of my injury.
Sometimes, I think men are more laid back, and accepting about bodily functions, fluids, and modesty, in general. What you have to understand, about me, is that I had bathroom issues before my SCI. I have deep rooted feelings of shame & embarrassment, revolving around the need to go to the bathroom (number two). I couldn't use public bathrooms, or go at other people's houses. Having IBS complicated matters, and I would tolerate tremendous amounts of pain, holding it in, because I couldn't bear the thought (embarrassment) over going, and having other people know about it. I know that's illogical, and that it's a natural human function. However, my brain also tells me it's disgusting, unladylike, and I have always felt the compulsion to hide the fact that I do it. I have always been extremely critical of myself, and often hold myself to unrealistically high ideals, to be a perfect person. Having a SCI and being paralyzed has been my own personal hell. It has forced me to reveal every minute flaw, from acne, to bodily fluids, to poop, to my naked body, flab, hair in places I don't want, etc. The list goes on and on. Everything I used to work hard to perfect, through exercise, diet, grooming, makeup, and in the PRIVACY of MY own bathroom, by MYSELF, I'm now FORCED into sharing with others, and are exposed, for all to see.
I have been self conscious about my weight, and my looks, my entire life. I've always felt the need to be perfect; to look like the women in magazines; to be the best in everything I do; best in class; best teacher; best artist; best daughter; best friend and so on, and so forth. Although I know I'm only human, just like everyone else, when I was on my feet, at least I could deal with my humanly imperfections, and flaws, in private. I had the luxury of being able to create, and mold myself into the best possible version of myself, through hard work. I had control, over handling and tackling my flaws, my way, by myself. Paralysis has robbed me of my control, and my privacy. It has been hell.
I was never comfortable in my own skin. I was always working to improve myself. At the time of my accident, I had already scheduled a cosmetic procedure, to enhance my looks; to be a better me. My accident happened three weeks, before surgery, and it never got done. It still bothers me, and I still feel lacking. In fact, my SCI has made me feel uglier, and more flawed than ever. It's robbed me of the ability to exercise, and tone my muscles. It's left me flabby, full of scars. I can no longer take care of myself (hair, makeup, nails, skin, etc) the way I used to. Having to have other people, help me with those things, that SHOULD be private, has been awful. The worst aspects, of paralysis, and not being able to care for myself, by far, has been anything, and everything related to the bathroom, and my body. The more, foul, and disgusting, the more embarrassment, and shame I feel; the more violated I feel.
Having to have other adults, see my nude body (people that I'd otherwise, NEVER reveal myself too- like my mother, adult siblings, countless aides, friends, nurses and doctors) and have to touch, and help me, and WITNESS my urine, blood, spit, poop, boogers, vomit, and pimples, is horrifying to me. I feel like paralysis has stripped me, of my basic human rights, to care for myself, and keep my self respect, and dignity. I HATE every single time I need to expose myself, and my flaws. I SHOULD at the very least, have the control, and privacy, to handle my body, and all of it's flaws and functions, as a self sufficient adult. It's not normal, or right, that paralysis FORCES me to reveal all my insecurities. Every human being is entitled to privacy, however paralysis has made that impossible for me. Living with paralysis, has imposed countless, uncomfortable, emotionally, and physically painful limitations on me, that leave me with no choice, but to accept, being violated, and continually exposed.
The thought of having to undergo another surgery, and have ANOTHER false, oriphus cut into my body, is unacceptable. I know the pain, and embarrassment that my catheter causes me. It is revolting, and I hate it. It is unnatural, and leaves me susceptible to chronic infection, and in and of itself, has been a source of sickness, and physical discomfort. I absolutely refuse, to do the same, with the single most repulsive bodily function (in my opinion) possible. I will not live with a bag of feces strapped to my side. I'd do ANYTHING to NOT have to "go" in the first place. Being perpetually attached to a bag of shit, to me, is the ultimate submission of self respect. If that is where I'm at, in life, that I must stoop to that low, to extend my life, then life itself is not worth living.
I have endured unconscionable compromises, in these last six years, for the sake of living, but at what cost? I am miserable. I hate paralysis. I hate feeling violated. I hate having little, to no control over my privacy, my health, and my body. I have suffered with loss on such a massive scale, that no one should ever have to suffer. My body and mind are rejecting this unnatural life. I will not submit anymore. I have suffered enough. I have (and continue to) accepted help, to be fed, clothed, and bathed, to endure bowel program (getting routinely sodomized- for lack of a better description), take dozens of pills every day and have a catheter. At what point, am I allowed to say, enough, is enough? I see very little quality, in the life paralysis has forced on me. I will not bend any lower. I will not compromise any further.
I'm tired of living a lie. I am not happy. I will never be satisfied with THIS life, because of ALL the compromise, and lack of privacy. I don't think I'm being unreasonable, for wanting BASIC human rights, and abilities. I don't think it's illogical, or wrong, to want a normal life, to want better for myself, and to have limits, to what I'm willing to accept. I think I've been quite flexible, and rational, these past six years. I understand my limitations, and know the reality of my situation. I know that's it's not done out of malice, but out of care, that people want me to accept, the unacceptable. People want me to live, for them. I'm thinking about living for me. Getting a colostomy is not something I can, or want to have handle living with.
Yes, my decision to forgo taking antibiotics will most likely result in my death. All I'm saying is that, I haven't decided to PROACTIVELY hasten my death, by refusing food/water. I can't control getting, or not getting a UTI, or any other infection. I can control, if I want to fight to live. In that regard, I see no value, in prolonging my own suffering. Just as, getting a colostomy, would serve to extend my life, it would also extend my suffering. No matter how I look at it, living with paralysis, given my physiology (having IBS, needing a catheter, being completely paralyzed, dealing with AD), my personality, and my personal standards, it only equates to suffering. As long as I live, being completely paralyzed, I will continue to suffer, because of my hate of being dependent, lack of privacy, and chronic illness. To me, this life is not worth fighting for anymore.
I'm not saying, I have absolutely nothing worth living for. My loved ones, and the love, support, they give me, and the time we spend together IS most certainly valuable. However, on a whole, living with paralysis is very painful (emotionally and physically). For me, personally, their love and support, is not enough, to counterbalance the immense loss I've endured, and doesn't justify me continuing to live THIS way forever. I'm tired. I don't want to keep extending THIS life. I know that sucks, for my loved ones. I know the pain of loss, better than anyone. It doesn't mean I don't love and appreciate my friends and family. I just feel like I love myself enough, to not want to keep perpetually living a life that is torture. No one has to agree with me, they just have to respect my choice. I'm the one living (or dying) in my shoes. What will happen, will happen. I am at peace with that.
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chrissy, everything you said automatically brings out the counselor in me.
ReplyDelete"I have been self conscious about my weight, and my looks, my entire life. I've always felt the need to be perfect; to look like the women in magazines; to be the best in everything I do; best in class; best teacher; best artist; best daughter; best friend and so on, and so forth."
It sounds to me like you were never going to be satisfied with your life no matter what happened to you.
"I was never comfortable in my own skin. I was always working to improve myself."
There's no reason that you have to stop this unreachable goal just b/c you're not able-bodied anymore. Yes, I understand all the horrors of SCI. They are many and they are there every morning waiting for you when you wake up. They will always be there.
SCI appears to have caused you to face all your personal demons, that you had before you were injured, in what seems like a life-or-death struggle.
You're right, whichever way you choose is your choice. Every person has their breaking point. All I would say is that you should not make a decision from a point of desperation. At the very least, improve your quality of life first. See a counselor about your body issues, emotional issues, pursuit of perfection fantasies, etc., and find some peace before making that choice. I think you at least owe yourself that much.
@Wheelz- You're right in the sense, that I was always striving for perfection. Like I said in my blog, I had scheduled a cosmetic procedure. I was supposed to get breast augmentation surgery. I have always felt lacking, in that one, very specific area, and it's always caused me to feel inadequate, as a woman. However, I am confident that if I would have had the surgery, and had never been injured, I would've found (and felt) the contentment, I've always been looking for. The other issues I had, in terms of my looks, were minor, and were easily remedied through exercise, diet and grooming. The difference now, is that I have NO control, over my body, at all. I can't exercise, I'm as flat chested as ever, and can't fix myself up (hair, make up, etc) the way I used to.
ReplyDeleteThe bathroom issues are worse, than all the superficial looks issues. The embarrassment, and sense of violation I feel, over having to have help with my body, and bodily functions, are by far, more painful, and harder to cope with, than my vanity. The fact of the matter is, there is no solution, to my problem, in the fact that there is no cure for paralysis. As long as I'm paralyzed, I'm going to be forced into accepting help, and need to have a bowel program, catheter, and to be bathed, clothed, and fed. There is no getting around any of that.
I do see a counselor, every month. I have been going to therapy, on and off, since my accident. I also take an ever increasing amount of anti-depressants and anti-anxiety medications (Remeron, Xanax, and Pristiq). The root of my problems, all stem from my paralysis, and the limitations, and treatments, it has forced onto me. I continue to be open, and honest with my caregivers, family, and medical staff. I have explored numerous alternatives, and taken a million tests, in hopes of alleviating my AD symptoms. So far, nothing has been successful. It is not for lack of trying, or solely due to depression, that I feel this way. It is based on six years of living, in my body, and having exhausted many, many attempts, to find relief, and find ways to better cope. Reality is, there are very few options for me, and my body, and mind, are in constant pain. It is a vicious cycle, that has gotten worse with time. I'm not making any rash decisions. My decisions have been well researched, thought out, shared, argued and expressed, with those closest to me, and through my writing. Through sharing, my hope is to raise awareness, about paralysis, and also highlight my personal reasons for advocating for the right to die, and my beliefs on euthanasia.
you're right on with a lot of those counts. there ain't nothin' good about SCI. never has been. never will be. it's ugly, demoralizing, frustrating as hell and frequently humiliating, and being a part of a mentor program, i've known a few people who chose to take their own lives instead of suffer through the life that SCI brings. i always understood that decision.
ReplyDeletemaybe that is one of your purposes here. i hope you will push to take your plight to the national level though first. bring as much attention to yourself as possible so you can reach a lot more people. maybe the CRF will do an article about euthanasia. i'm afraid if all you have is this blog & a CC post that your plight will be gone not long after you are.
Hi,
ReplyDeleteThanks for sharing such great post. Colostomy is surgerical procedure wherein an artificial poening is made in the abdominal wall, from where the waste material can be taken out instead of passing through the anus.
Thanks,
Colostomy