Next month it will be a year since I found the huge grossly infected wound on my hip. I have been humbled by the experience. In many ways my confidence was shattered. I had not been sick much less dependent upon others since I was a child. It was a terrible experience. I did my best but in retrospect I have many regrets and wracked by guilt (I am after all Catholic). I wish I had handled myself differently. However the past is the past and looking back accomplishes little. What I am most concerned with is finding what I have termed a new normal. While I have resumed my ordinary life I have done so with extreme caution. I check my skin at least once a day. I push up and relieve pressure on my skin frequently--at least every ten minutes. When I start teaching again I am sure students will think I have some sort of weird psychological tick. I know I cannot endure another serious wound. Thus when you remove all other variables I am now driven by fear--fear of another wound. This thought permeates everything I do. I hope my fear will go away but am not sure it will nor do I want it to vanish. Fear will keep me healthy.
What boggles my mind and directly causes me to remain fearful is the unknown. I still have no idea how I developed my wound. More than anything else this worries me. Could I be subject to a recurrence? The answer to this question is a simple yes. My skin is not as tough as it once was, especially at the wound site. This is a well established medical fact. To compensate I get off my skin, i.e. lay down, several times a day for hours. I have not done this since I was paralyzed in 1978. I despise stopping my day in this way. I am always aware of how long I have been sitting, planning when I can lay down. If I am up most of the day I am sure to lay down for an extended period the next day. Again, I despise this. I despise the fact my very fancy clinitron bed is still in my living room. I have plans to move it to my bedroom next month. And here is the problem. Skin care is trial and error. Sounds straight forward. No it is not. An error, just love the euphemism, could mean a day, week, month or months in bed. A so called error is a disaster. Hence my extreme caution. Yes, I could sit up from the time I wake until the time I go to bed at night some 15 hours later. But doing that at this stage is simply fool hardy.
Here is what keeps me up at night--will I ever return to norma? That is will I wake up, check my skin, get in my wheelchair and not think about my skin. I did this for 30 plus years. Sure I had nicks and cuts along the way but nothing that sent me to a doctor. I had never had a serious wound. Not one. I am surely not the only aging paralyzed guy living in America. I know I am not the only guy (or gal) who has developed and healed a severe wound. In fact I learned the most common would for a person paralyzed 30 years or more with no history of skin problems is a stage four wound. Go figure.
The above thoughts were prompted by an article I read in the July issue of New Mobility. The article in question "If I Only Knew Then..." was written by man who is my age, was paralyzed over 30 years ago, and had no history of wounds. Like me, he developed a stage four wound. As is typical of New Mobility, the article was positive and hopeful. Nary a bad word is ever printed in New Mobility, the happy paper for paralyzed people. They also found one of the few paralyzed people that was employed (the author was a lawyer), had great health insurance, and the employer was happy to make reasonable accommodations. I do not live in this fantasy land but multiple good points were made. Pressure relief is important. As we age so too does our skin. Hence we need to be more not less cautious as we age with a spinal cord injury. Avoid shear from clothing. Most importantly be willing to modify our life style. It is this last point that is most important. How many of us, myself included, are willing to modify our life style? Not many. I have done so. I do not like it but realize I have no other choice. When worried I try and remind myself where I was a mere three months ago. I was doing very little. I could not have gone to Seattle like I did earlier this month. My strength has returned to normal and my endurance is getting better daily. Six months ago sitting for a few hours was physically exhausting and transfers were an adventure. Today, I transfer as I once did and sitting is not tiring at all. In short, I have made giant strides physically. It is the emotional baggage that I have yet to overcome. But overcome I will. I know despite my fear, very day is better. Every day I get closer to where i was one year ago. Every day I inch closer to what once passed for normal.
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, August 11, 2011
Finding a New Normal
Posted by william Peace at 6:16 AM 4 comments:
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
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