Search This Blog

Friday, December 17, 2010

Feeling Betrayed

I was at wound care yesterday. I am back to my healing ways--sort of. The good news first: I am pretty much down to a single wound. The wound on my left hip that I developed in the hospital will be healed within a week to ten days. It is very small, half the size of a dime, and obviously almost healed. The other wound I developed on my ass is also healed. This was never a serious issue but could have been. The bad news: the wound on my right, the big problem from the get go is, well, a real problem. And truth be told it was always the major problem. It was a stage four wound, deep, nasty, and grossly infected when discovered. It is slowly getting smaller and has filled in--I have great granulation so I am told. Frankly I think it looks like chop meat--non infected lovely fresh tissue an MD would say. But that is not the issue. I have tunneling or undermining that is not getting any better. This is a huge problem. The MD changed the way we are doing the wound vacuum and hope in three weeks the undermining/tunneling is substantially better. If not, it is flap surgery for me. This surgery is a measure of last resort. Frankly the odds of me healing, that is the undermining/tunneling being better in three weeks are nil. I suspect the three week wait is less about healing and more about scheduling--going to the hospital for surgery between Thanksgiving and Christmas is a very bad idea. Shoot, going to the hospital for any reason between now and New Year day is a bad idea. I speak from experience. Staff does not want to be there, patients do not want to be there or conversely sad people that have no family want to be there. It is a bizarre mix of staff and patients. If humanly possible do not get involved.

I have thought of little else aside from my wound in the last 24 hours. I feel as though I have somehow failed or my body has failed to heal. I have been a model of "patient compliance" and know I am not to blame. I do not sit up often, my sitting is in fact severely limited. I try to bend my hips as little as possible in fact. None of this has done much good. I am worried--deeply worried. Flap surgery I see as a measure of last resort. If it fails I am in deep trouble. I worry not about the routine things that go wrong with surgery--I accept that risk as beyond my control. My worries are what happens if flap surgery fails. At that point I am at the end of the road--meaning I will never sit normally again. It will be just me and these four walls. That will be a hard life for sure. I have already lost the Fall, now the winter, and potentially much more. Of course I know flap surgery is usually successful and I will seek out a top notch plastic surgeon that does this all the time in New York City. The reality is I have no significant risk factors that could hurt me--I am not diabetic, have no circulatory problems nor am I obese. If anything I am too skinny--I weigh a whopping 140 pounds. I am even trying to gain weight without any luck (no more lite beer in the house).

What do I do when worried as I obviously am? Well, I read too much. I have been researching flap surgery and delving into growth attenuation again. The Hastings Center Report I read and wrote about has me wired. I am growing skeptical of the conclusions reached. I wonder what a rigorous informed consent would involve for those parents that would consider such a radical course of treatment that growth attenuation is. My idea of informed consent would render it virtually impossible to go through with growth attenuation. Frankly I don't trust large institutions such as Seattle Children's Hospital. I also have no faith in ethics committees--the sort of committee that already allowed growth attenuation to be performed, illegally as it turned out. Not a minor mistake in my estimation. I am also preparing for my son's return from college (that means ordering huge quantities of food he consumes). Now this makes my heart soar! I miss him very much but know he is learning and becoming an adult. His development is amazing and I am very much the proud poppa! Of course I also know by the time he returns to college for the Spring term I will be happy to see him go. It will not be easy for him or me to coexist. He is nocturnal and I am not. He is 18 and I am, well, old! I have household rules and he rebels--as he should. I know I did and made my parents crazy. I guess the apple does not fall far from the tree.

Monday, December 13, 2010

Monday Morning Thoughts

Two days ago I felt the future was bright. I blame or credit the itty bit of snow we had. We had enough flurries to coat the ground. It was truly beautiful. I had a fire in my wood burning stove, cracked the living room sliding door open and felt the chill air be whipped into submission by the heat of the room. I thought that life was indeed sweet and that our culture has evolved in my lifetime. Based on the way information is now shared with the click of a few buttons on a computer I suspect social change will take place with increasing speed. What do I do when I feel so optimistic? Well I spoil myself and read the work of people I deeply admire. Hence I went to read Stephen Kuusisto always thought provoking writing at Planet of the Blind. Now this man can write. This man is a scholar’s scholar. He is also funny in the extreme. But what I love about his work the most is his ability to make me think. And I never cease to be amazed that we often share the same views and visions of the future. A few days ago, December 5 to be precise Kuususto wrote:

The stories arrive from every corner: a woman in japan who has had a stroke is walking with the aid of motorized legs; an American soldier is returning to combat duty with a graphite foot; a blind man in Finland has received an implanted microchip in his retina and he can see for the first time in his life. The changing nature of disability is in fact a cyborg manifestation of our broader human future—soon everyone will be part flesh and compensatory device.
“What’s that Mommy?”
“That’s a picture of the old day when people just had arms and legs”.

When I read this I thought of many experiences I had as an adaptive skier last winter. I felt like the Pied Piper of the slopes—kids were drawn to me like a magnet. My sit ski made me without question cool! Adults too were intrigued. I was asked more than once if it was possible to rent a sit ski as it looked like fun. Such experiences led me to conclude that within the realm of adaptive sports, skiing in particular, there is a cool factor involved in being an adaptive athlete. This is particularly true with kids—they are drawn to technology of all sorts. My son for instance thinks my mother’s prosthetic limb is the height of cool. When he was younger he termed her “The Grandma-nator”, the obvious reference here to the Terminator movies. No such cool factor however extends to disability within the academic and medical realm. Disability among academics is not seen as positive in any way. In fact a great deal of animosity exists that is directed to students with disabilities that seek any of accommodations. For instance, extra time on tests is perceived as akin to cheating or an unfair advantage. Likewise, spending money on ramps, elevators and electric doors is seen as a waste of scarce resources for a limited number of people. This thought process makes me crazy. It is just so wrong and narrow minded that is boggles my mind.

Why is disability, especially an obvious one such as paralysis or blindness such a big deal? It does not take a person long to learn how to adapt to such physical deficits. Indeed, there are some advantages to being paralyzed and here I am not thinking of handicapped parking! The point is I take great pride in my body and what it can do. I see nothing inherently “wrong” with myself or my body. Most people do not share this sentiment. By most people, I mean all those I encounter in a day. Disability we are taught in subtle and overt ways is bad. Everything must be done personally and medically to “overcome” a physical deficit. But no one stops to think what happens when a physical deficit is permanent like my paralysis. The fact is we people with a disability simply move on with life and incorporate disability into our lives and concept of self. It is part of our very idenity. Sadly, most do not get this at a fundamental level.

Eric Parens, a bioethcist I know and respect has written about the above disconnect between how a person with and without a disability think about disability in the broadest sense of the term. He wrote that when he initially heard disabled people state their disability was a central part of their identity he was taken aback. Parens is not proud of this fact but her sure as hell is honest. According Parens, “I practiced some armchair psychoanalysis. Yes, yes, that’s very nice. But let’s be honest: you’re in denial. The more I heard about people who say that the most difficult thing about having a disability was the way temporarily able-bodied people treated them, however, the more I began to take them at their word. I became convinced that if, after a process of truly informed decision-making, someone with a disability refuses the use of medical means to improve her social experience, then there is no good alternative to respecting her decision, no matter how surprising I might find it.”

The above quote was found in “Respecting Children with Disabilities—and Their Parents” (Hastings Center Report, 2009). Parens gets it! He was capable of putting aside his own learned bias and accepting people, in this case those with disabilities, for who they are as humans. If he can do this and children appear to be inherently capable of accepting disability why are adults so resistant to this line of thought? I must reluctantly conclude fear is a factor. Unlike other minority groups, disability is the one minority any person can suddenly belong to via bad luck such as a car accident. But surely fear alone cannot be the sole reason people with disabilities encounter such overwhelming prejudice. I have pondered this for 30+ years and have yet to come to an adequate resolution in my mind. I refuse to accept the status quo and hope through technology, social evolution, and superior exchange of information we can hope for a better future. One in which a paralyzed person such as myself can read in history books what discrimination was like.