Yes, the title is an obvious reference to baseball, a sport I adored growing up. My team as a child was the NY Mets. In the 1960s it was easy to root for the Mets, an expansion team. They stunk but were lovable losers after their inception. But a funny thing happened to the Mets in the late 1960s. Thanks to outstanding pitching they won the World Series in 1969. I was just a little boy at the time, a very sick one too. Back then I was spending most of my time on neurological wards at Columbia University Neurological Institute. Those were hard times, an era when a child was expected to act like an adult and do one thing--get better. That was my job and I was expected to nothing else but focus on recovery. That meant no television or radio and often bed rest. I was supposed to wear a hospital gown and did so--I had no choice. But I did have one thing going for me: great parents that fought tooth and nail for me. Hospital rules, rigid and inflexible, were bent to the breaking point on a regular basis. I was allowed to have the very first transistor radio sold to consumers. This technological marvel fit in the palm of my hand and I was able to listen to each and every Met game. In the Fall of 1969 I was the most popular person in the hospital. I knew the score of the Mets games as they were all played during the work day. I was a folk hero--people from all over came to see me and asked "what was the score?". I was a rock star. Like all stars and great teams success was fleeting. By the mid 1970s the Mets stunk again.
For the last week I feel like the Mets--I am in a deep slump. The setback from last week has really thrown me for a loop. I am essentially miserable. I will not be healed by Christmas as hoped. Ski season is likely lost. My life sucks. I have no sense of normalcy. I do not look forward to waking up. I am just watching life pass me by. I miss my ordinary life filled with work, fun, errands, and aggravations. Yes, I even miss people so I must be in bad shape! I want to drive my car and cannot because I am too weak to get in and out by myself. I want to grocery shop. I want to get up and go, go, go. None of that will happen anytime soon. I have missed the Fall, an entire season and months of activity. I cannot seem to focus in anything else but this loss. I am going buggy laying in bed day in and day out. Yet writing this outrages me. What a wimp! How ungrateful can I be! My family sacrificed for me and I sit her feeling sorry for myself. Worse yet, I know I am lucky, I escaped a nursing home. Institutional life would have killed me.
Knowing I am in a deep slump and doing something about it I am learning are two different things. To continue my baseball analogy I am in the dog days of August and batting under .200. How to end this slump is I hope a matter of time. I need one good day of work to get me going. I can thankfully sit up slightly more--the wound on the right side of my butt is already healed. I do not want to push things though. I am looking at computers and hope to be on line on a regular basis soon. I cannot decide what sort of computer to buy. My latest thought is to forego a desk top Mac and go for the Airbook. Of course I also need to figure out how to pay for this--no small feat given the fact the plumber was at my house most of the day. Let's see a new computer or running hot water? Hot water will win every time.
Well, there is no neat and tidy end to this post. I like to have a clear beginning, middle and end to everything I write. Not today. Just cannot come up with the goods, sorry. See I told you I am slumping, even this post leaves much to be desired. Indeed, it contains the sort of self pity and woe is me attitude I despise. I thought long and hard about hitting the delete button but changed my mind. I hope this will jump start me. I do have much to say. The Ashley Treatment is on my mind as is a way to get bioethicists and disability activists together. I also read a great book by a paralyzed woman with two kids. She wrote eloquently about her experiences and the bigotry she encountered as a mother. This fills a huge gap in the literature on disability and feminist scholarship. All this will wait until tomorrow. My sitting time is now spent. Ugh, I am frustrated in the extreme. I suspect if I could sit all day I could break out and get work done.
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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Tuesday, December 7, 2010
Slumping Badly
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
Thursday, December 2, 2010
Set Backs
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.
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.
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
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