Excuse my silence. I have been set back by computer woes--my ever so reliable well designed Mac has died. Cause of death, kernal panic, something I never heard of until it beset my machine. I was set to buy a new Mac until my dishwasher, sink, and hot water heater all decided to break at the same time on the same day. I am relegated to using an old unreliable lap top that works when it is in the mood. Hence getting on line has been a trial and my budget devoted to the plumber. Afterall, what is more important running water or a computer?
I was at wound care today and had my first setback. I have a new minor wound on my ass--a pressure point sore no less. Sitting as a result is severely cut back--no more than one hour a day. This is devastating emotionally. Intellectually I know it is not that bad--a small abrasion that will heal in a week or two. My brain knows that but my heart is broken. Worse yet, the under mining on my left side is not filling in or doing so at a glacial pace. The wound is in a bad spot I am told and hard to heal. All of this was complicated by a urinary crisis that caused me to spend a night in a large NYC hospital. Ugh, how those huge institutions bring back bad memories from childhood, none of them good. In short I am filled with bad news and more bad news. Oh, and to add insult to injury I lost power yesterday in the middle of the night, the night after I got home from a sleepless night at the hospital. We had a big wind/rain storm and thousands were without power. Do I rate a high priority with the electric company with my clinitron bed and wound vacuum? In a word, no. Apparently only a respirator is deemed a medical priority. No point in arguing with a giant electric company on this point.
I do have one good thing to write: I had the best Thanksgiving of my life! My friends from the Vermont ski house came to my home and my son was home. What a wonderful day. I am stunned by my son's maturity. In fact, I am teary eyed with pride. I have spawned a responsible adult! Or as adult as a college student can be that has a penchant for sleeping to 2PM! As for Thanksgiving the company was great, all fine people that knew I had been and am going through a rough time. For day I felt normal, alive and social. Frankly,the social isolation is getting to me. Some of this is self imposed--I am depressed with my progress. Some of it is the nature of being stuck at home day in and day out. Being computer-less has not helped. Given this, Thanksgiving with such good friends was truly special. Indeed, I was so happy I hope to repeat the day next year. The post Thanksgiving week has been a trial, the first time my progress has not been linear. I knew this may happen but was not prepared for the devastation it has caused. I am just sad, deeply sad, and worried. In the middle of the night I have dark worries, will I ever return to normal? Is my life forever compromised? I do not think this is the case but I worry. My worries have worries and I need to dig out my old worry doll. This reminds me of my father who was a world class worrier. I guess the apple does not fall far from the tree.
Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.
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Thursday, December 2, 2010
Posted by william Peace at 6:00 PM 14 comments:
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
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