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Saturday, September 25, 2010

On Dependence

The list of things I cannot do is long. The list of things I can do is short, far too short. I can eat, write, read, and manage a small world in my living room. But that living room is akin to Mars. What your average human can do I cannot. This reality is hard to accept much less live wiyh. We Americans celebrate personal autonomy, self determination, and independence--these are core cultural beliefs. We conveniently ignore the very real factors, social, economic and physical, that affect one's ability to be independent. When we fail to be independent that failure is often self directed. Well, I am not directing any such self blame inward. But this does not mean I am happy. What I am is emotional--yikes this is hard to cope with. I frequently well up in tears and my frustration level is off the chart. As I told one friend, I don't do dependency well. Like it or not, I will ned to master this in the coming months without losing my sense of self. For now I am taking things day by day and moving from the trauma of two weeks in the hospital and two bloody debredements.

The above thoughts led me to read Bob Murphy's Body Silent yet again. He eloquently wrote about how his life as quadriplegic made him utterly dependent on his wife and family. The stress and angst thiscaused was significant. How this will affect me, my family, and friends ask for help is to be determined. At least my son is out of the equation--he is at colloge and will not return to the Xmas holidays at which point I will be up and around or close to it. So here I lay and wory. I am not worried about healing. I know I will heal. No my worries are tied to those I am dependent upon. This concern I know is base on the fact relationships are reciprocal, a give and take. Well, I am going to be doing more taking than giving. I thus feel powerless, not a good frae of mind or method to manage relationships. But I also know this is a short lived state. I simply hope I survive this intact and with continued family support.

Friday, September 24, 2010

Thank You One and All

My day has been spent with wound care people and about a million calls to arrange logistics of my care. Tomorrow I hope to catch up on email and bills. My God the bills are daunting. But that is not what I want to write about. I read over my posts since I got sick and am taken aback by the support of my readers. Your words have moved me deeply and I am sure I will take up some offers for books and other support. I never cease to be amazed by the vibrancy of the disability community and how willing they are to lend a hand. It is not just the well known groups I admire such as ADAPT and Not Dead Yet but all the other seemingly nameless people moving forward too. I truly love this amorphous cyber community of people with a disability that supports one and advocates for the civil rights we value.

I wish I could write more but I have transportation issues. I need to see the MD next week. A round trip via ambulance is not covered by insurance and will cost $1200. Obviously I need to figure out a back up plane. No idea yet what this backup plan will entail.

Thursday, September 23, 2010


I was released from the hospital today. What a relief. My last two days were spent with no internet access and iffy television service. Boredom was a major issue. But I am officially in what I will call phase two of recovery. Phase one, getting medically stable and the wounds non infected, is complete. This was hard physically and hospitalization miserable. Phase two, months in bed at home dependent on others has just begun. This will require great inner discipline and fortitude. In some ways this second phase is going to be the hardest. I am home yes but can so virtually nothing to help myself. But I am home. I have real internet and email access. I will eat healthy foods and be able to have a beer with dinner. My dog Kate is at my side, though a bit confused by my bed. Speaking of beds, I am set up in my living room. In short, I have all the trappings of normalcy but am far from normal. This is the new reality I must adapt to. Adapt I will. I have been doing it for the last 32 years and am good at it--as are most people with a disability. There is much more to detail but I am too tired and want to answer a few emails. Better days are ahead as are hard times. What a trip I am about to undertake.

Tuesday, September 21, 2010

Ugh, Fever

Monday, September 20, 2010

Stronger Body Weak Spirits

Physically I am better. This weekend I felt like a human pin cushion but the end result is improved health. My blood work is great given the fact I have two open wounds hooked up to a wound vacuum. I am largely done castigating myself, content now to move forward. It is the moving forward that worries me. I am concerned first and foremost about the cost of home care. The bed I bought cost as much as a car, a very nice new car, a luxury import. Wound care is covered by insurance. The wound vacuum, I must rent and the company is interested in one thing--two weeks payment inadvance. It does not take much thought to realize the next few months are going to be frightfully expensive. All decry the health care system, acknowledge I am gettng screwed and then add the proviso there is nothing we can do. Sadly they are correct. My health insurance sucks and I have no other options. What haunts me is what happens to others that do not have a large and supportive family. Where do they go? What do they do under identtical circumstances? In short, I know I am lucky. Howver this does not change the fact I havee been in the same room for twelve days and my spirits are low.

Coping with boredom over the weekend was hard. Crappy novels and football are distracting but for only a while. Hence much of last night was spent crying. I just could not help myself. I was also smart enough to wait until it was very late so I could cry in peace. The hospital I am in is very patient oriented and I am often asked about pain and if I am depressed. I try to tell them, hell yes I am depressed, is that not a normal reaction. Such honesty results in a suggestion a psychiatrist make a visit. Great, is he or she going to make me heal any faster or solve the financial implications of my wounds? Don't get me wrong--if I suspected I were clinically depressed I would seek help. But I am down for damn good reasons and a good cry may have helped me. I am functioning but just sad and worried. I get home Thusday assuming the bed arrives as promised. I am sure my spirits will soar when I get home. I miss my black lab Kate and am tired of hospital life. I also realize when I get home that my soaring spirit will be confronted by a harsh reality--i will be bed bound for months, utterly dependent upon others. This fact more than any other bothers me the most. I simply have not been dependent upon others since I was a morbidly sick child. This is a state I have never wanted to repeat. It is my hope that with the help pf my family I can get through this unscatthed. No wonder I am worried.

Sunday, September 19, 2010

No More Self Castigation

One and all I know implore me to stop beratting myself for developing pressure sores. At an intellectual level I know this is good sound advice. The emotional side of my personality however is far less tolerant. I chalk this up to my Irish Catholi upbringing. We Catholics specialize in guilt. Hence I may have left the Church but the Church has not left me. In short no more posting of self recriminations.

I remain medically stable but am in need of a blood transfusion. Debridement of the wound on my left was bloody. I essentially had bed side surgery--the details of which are too unpleasant to detail. I assume with the transfusion I will feel stronger. Today and yesterday my battle is boredom. Internet access remains limited at best. The higlight of my day was a sushi dinner a friend brought to me. Wow, real food. Better yet my brothere stopped by and brought me an ice cold beer. It was the second best beer of my life!

How do I cope with boredom? Lots of bad novels, football on TV, so yes I am desperate. And I long to answer comments many have made but cannot do so. As I said internet is severely limited. Indeed, writing theses words requires much squinting, a crappy key board, and far too smalll TV screen. Boy do I miss a real computer! However even the bad access I have is better than nothing. Okay that's all for now. Thanks for the support and I promise to cease beratting myself. Your words and comments help very much.