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Thursday, January 12, 2012

Happy Anniversary

Tomorrow will mark the the 34th year since I took my last step. Usually I am so busy I fail to acknowledge must less think about this date. This year is different though. I have been in a retrospective mood in recent weeks. I do not miss walking one iota. The thought of walking is so far from my mind it is akin to wishing I could go to Mars. Walking is simply not relevant to my life. My retrospection is more inwardly driven. Concern for my son and his future. Wonderment about just how unpredictable life is. Amazement that I am a middle aged man, a responsible adult. Thinking of the people I know and those who are no longer a part of my life. Were these sort of thoughts not meant for New Year's Eve? Oh well, I guess I continue my life-long pattern of doing things differently.

So I put it out to those that read my blog. What if anything should I do tomorrow to celebrate my 34th year of paralysis. And remember this is indeed a celebration. I celebrate and consider each day a gift.

Wednesday, January 11, 2012

Responses to Paralysis

I am an avid New York Ranger fan and closely follow the team and NHL in general. My interest dates back to when I was a little boy and the big bad Boston Bruins broke my heart on a regular basis. I truly love hockey. It is a spectacular mix of athletic skill and violence. Hockey players as a group tend to be very kind people, down to earth and giving. It has always amazed me how few hockey players suffer spinal cord injuries. Of course some players have had such an injury. Most recently I have been reading about Jake Jablonski and Jenna Privette, two young hockey players in Minnesota who suffered a spinal cord injury. As often happens, there is an out pouring of support from the hockey community. Based on newspaper accounts, Jablonski will never walk again. The prognosis for Privette is a bit more optimistic.

I have been thinking a lot about newly paralyzed people in the last month. The death of Christina Symanski deeply troubled me. How I keep thinking could a paralyzed person choose to die? Is paralysis really that bad? For me the answer is an emphatic no. This Friday is also a milestone for me. January 13 will be the 34th year since I last took a step. In a retrospective mood, I have grown to feel increasingly disconnected from newly paralyzed people. My experience was radically different from what people go through today after a paralyzing injury. There were no laws to protect my civil rights 34 years ago. Wheelchair access was perceived to be a choice, charity, and obstacles abounded. I was driven largely by fear. I wanted a normal life. Normal to me meant going to college like any other 18 year old man. I was paralyzed but the most important part of my body, my brain, was working perfectly fine. And I did exactly what I set out to do. I went to college, graduate school, got married, had a child, and much later divorced. All very ordinary experiences.

This is what I have been thinking about: why not be ordinary? Why is the ordinary out of the reach of paralyzed people? Why was I able to move on without missing a beat? Many paralyzed people I know have done the same thing. I know researchers, doctors, academics, business men and women, and lawyers all of whom are ordinary, ordinary paralyzed people. This line of thought was prompted by a story on a local Minnesota NPR radio station. Ali Lozoff wrote "Navigating the Life that Follows a Spinal Cord Injury". It would be easy to critique the article as there is too much about overcoming and inspiration. But the bottom line was her admiration for her Uncle Bill. He was paralyzed as a youth and lived 45 years as a semi independent quadriplegic. What does Lozoff remember? Her Uncle was funny, complicated, determined, talented and happy. She recalled:

"For 30 years he sold pieces at art fairs, in galleries and on street corners; my cousins and I grew up working as his assistants, packaging note cards and making change. We saw the varying degrees of pity, fear and discomfort he encountered in other people every day of his extraordinary life."

Lozoff's Uncle Bill learned to paint just like Symanski. I never met Symanski or Lozoff's Uncle Bill but in a way we are all linked. I did not get this connection until I read the following words by Lozoff: "I've been trying to figure out the best way to carry on the inspiration and example of his life. One way, given the news of these recent sports injuries, is to tell Bill's story to more people. Jack Jablonski's prognosis is the same as Bill's was; his doctors say he will never walk again. Even so, the circumstances are different; the medical advances since Bill's injury are innumerable. But the life-long challenges are similar."

I am willing to ignore the reference to inspiration and have instead latched on to the phrase "the life-long challenges are similar". I would maintain those life-long challenges paralyzed people encounter are social and take many forms. Gross lack of social supports are commonplace. Unemployment is rampant. Access to health care difficult or impossible and too often results in institutionalization. Mass transportation is problematic at best. Housing scarce. These are social problems that preclude an ordinary life. For some, they are beaten down by such barriers. This worries me. In spite of 40 plus years of legislative initiatives designed to empower people with a disability newly paralyzed people are set up to fail. Sure we have laws designed to protect our rights but such laws are meaningless without social support. We as a people, American people, do not value laws of inclusion. The presence of a person with a disability still causes a social disruption--it upsets the "primal scene of sociology" as utilized by Erving Goffman. Part of me values my existence as an outsider. I know the norm will always escape me and that I have a "spoiled identity". This has not changed nor will it. Such a position is great for viewing and analyzing much social interaction. But a life spent as an outsider is not what many want--and here is where I understand others who struggle with paralysis and its social consequences. As Kermit the Frog said "its not easy being green". To this classic line I would modify to it may not be easy but it sure as hell is interesting.