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Tuesday, December 7, 2010

Slumping Badly

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.

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.