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Monday, September 15, 2014

Life from a Sitting Position - an MS patient's story

We have just about done this subject to death. Lots of attitudes and ap[p[roaches. Your responses were wonderful. I am happy to say I am just as ambivalent and confused as I was when this subject was raised. I remembered a column I wrote for AARP a few years ago about two individuals who go through life in a sitting position and deal with it. Here are excerpts.

Bob Schmonsees was standing on a ski slope in Pennsylvania almost thirty years ago when another skier broadsided him, sending Bob into a steel lift. He says he knew right away. “I was not able to move,” he says quite simply. Did you regard the chair as a prison, I wanted to know.

“The situation was the prison, the chair an enabling factor,” Bob replied after a moment’s thought. Seven years after the accident, Bob realized he had been operating in denial and endured a short bout with depression. Then he got rolling again and proved he could still have a life. “I became the top ranked player over forty in wheelchair tennis.” Was that liberating? “Yes, and gratifying.”

Bob continued an avid golfer and even ventured back onto the ski slopes again, though later he realized skiing strained his shoulders. It is all attitude, isn’t it? Did you have to work at it? “No. It’s in my nature.” And your DNA. “Right.” With age comes pain. Bob gave up tennis and deals with the intestinal problems that go with sitting for so long. “I have a good life,” he says.

Then am I a wimp as I look down the road at a chair? “Absolutely not,” came the quick reply. “You are in a bad situation. You have your vulnerabilities.” Bob paused. “This would be traumatic change. There will be a loss of independence. Look,” he continued,” people make using a wheelchair worse than is, but it ain’t no fun.”

This may not happen. In my gut, I know it will. My ability to ambulate will be gone. A walker is next. The rest will follow. “Everybody is afraid. For the average person looking around and seeing people like us, the sight may cause fear, but it is not inevitable. People like us are different.”

When Allen Rucker went down for the count in Los Angeles, transferse myelitis, which some people call MS of the spine, another autoimmune disease, struck, and in ninety minutes he lay paralyzed in a hospital bed. “It was frightening.” Soon enough he was introduced to his new wheelchair, the mode of transportation he would use for the rest of his life.

“I always considered the wheelchair liberating. I never resented the chair. “My favorite recreation was to wait until 3:00 in the morning and tool around Cedar Sinai Hospital looking at the incredible art on the walls.” This was Allen’s private proving ground, his way of easing into his new life.

“Richard, with you there will be nothing sudden about this. You already are preparing yourself for what might be.” Allen paused for emphasis. “You are on this gradual course. You don’t know it, but you will find it liberating. There is true mobility in a wheel chair. It’s not a horrible thing.”

Right. “You should lighten up,” he laughed. “You may find yourself more mobile. There always will be the stigma. People will still think you are a pathetic person. There will be a sense of pity, a sort of death by kindness. You learn to ignore it.” Hard to imagine. This is a pointless game game. What will be will be. I have better things to do than play out worst-case scenarios.

And yet the wheel chair is so threatening, maybe the final public signal of unbeatable weakness and irrevocable admission that one has lost the war. I have stood up to this illness for my entire adult life and lived my way. I cannot make my peace with the finality of sitting down.
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