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Monday, May 21, 2018

Sometimes Paralysis Sucks

Yesterday was unpleasant and uncomfortable. Like many people who survive and thrive with paralysis, I have multiple secondary complications associated with a severely damaged spinal cord. I have a long history of skin break-downs. Indeed, I had one wound that almost ended my life in 2010. Within the last year, I have developed a serious heart condition and take what seems to me to be far too much medication. Every time I organize these medications it is sobering to read "take daily for chronic heart failure" or "for pulmonary edema due to chronic heart failure" or take one tablet for "hyperlipidemia". When I read this I am all too aware of my mortality. I am also aware that heart failure is common among people who have lived decades after a spinal cord injury. For me, living for decades on the edge of dehydration because bathrooms are rarely accessible has taken its toll. In short, like millions of others, I am living with chronic heart failure. But here I digress.

Yesterday was bad because I was cold. I was not cold in the typical way the average human with a functioning spinal cord gets cold. My autonomic system is dysfunctional. As a result my ability to feel the cold is seriously impaired. Unlike most people with a spinal cord injury, I love the cold and hate the heat. The cold and rigorous exercise makes my spasticity go away. My legs which typically have significant tone turn to jelly for hours after I am done skiing, biking, or kayaking. Yet I also experience another kind of cold unrelated the temperature outside. I can feel bone-chilling cold for hours. Many paralyzed people know this feeling. The cold I feel is hard to explain. If we humans have an internal thermostat, mine is dysfunctional. Yesterday I felt bone-chillingly cold for hours on end. The cold I felt was exhausting. Thankfully what I experienced yesterday was uncommon. I know that at some point my internal thermostat will return to what passes for normal. I also know I am very lucky. I have never experienced autonomic dysreflexia a potentially fatal condition associated with high level of spinal cord injury (generally above T-6). I simply do not get urinary tract infections and do not have kidney disease or bladder issues. I do not have a long arduous bowel program. The circulation in my legs is quite good thanks to excellent vascularization. The neuropathic pain I experience is not overwhelming and does not affect my life-style. In short, the serious complications associated with paralysis are relatively minor. With an acute awareness of my body combined with decades of bodily management free of well-meaning but ignorant physicians who know little about living with paralysis I am in good shape. Yes, I am one lucky paralyzed man. That is my mantra after bad days--and yesterday was bad.

Despite my bad day, I still marvel at my body. It has been through the wringer. I often wonder how have I survived into middle age. I never thought I would turn 21 years of age much less settle comfortably into my 50s. I survived three massive spinal cord surgeries as a teenager, dozens of spinal taps and countless medical procedures as a child, a stage four wound on my hip, and a heart attack.  This cavalcade of medical woes has not diminished the feeling that my body has exceeded my wildest expectations. Whereas typical others see pathology and the medical industrial complex seeks to cure me, I feel victory. I have survived and lived and loved and worked and enjoy each and every minute of the day. More than many, I know life is a gift--one that is all too short. I know people don't want to know my reality. They take one glance at me and know everything. Assumptions are made, expectations are non-existent. My competence is open to question. Can I cross the street by myself? Can I get in and out of a car and drive? Can I have sex? The bar is set very low when one uses a wheelchair. My visceral experience living in a dysfunctional body is dismissed by most. When I point out that my body has adapted marvelously this observation is instantly dismissed by healthcare professionals and society alike. When I express delight about what I can do, my efforts are reduced to nothing more than a feel-good moment or the ridiculous notion I have overcome my disability. More than once when I expressed pride in what my body can do I have been tapped on the head like a child. Some of my academic peers, especially those in bioethics, are decidedly uncomfortable in my presence. Utilitarian philosophers of the Peter Singer type think all things considered it might be better off if I were dead. Those in favor of assisted suicide find my opposition tawdry if not somehow intellectually unbalanced. I am told repeatedly not all people are capable of living with a disability. Such ableist beliefs are rampant in the academy. If you doubt me read the insightful Academic Ableism. In response to such ableism I am supposed to have a good-natured philosophical debate? I am not Harriet McBryde Johnson who famously and politely debated Peter Singer at Princeton University. Sorry but no. I am too old and crusty to engage in this sort of collegial exchange. I can be polite but there is a line I refuse to cross. I simply refuse to be denigrated and judged. I decry the human penchant for snap decisions and reliance on worn out stereotypes.