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Life From a Sitting Position

The Emmy-winning TV producer and author writes about living with a chronic illness.

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Growing older was quietly painful for me, as I watched my father's multiple sclerosis advance ahead of mine. My old man had done the same with his mother, who shared the illness.

Our family has an unusual neurological pedigree. We also have a determination not to let it beat us down. My dad would fall and lie helpless on sidewalks and stairs, refusing to concede defeat, which he seemed to define as relying on a cane or a walker. Ultimately, though, that day arrived: my dad, like his mom, finished his life in a wheelchair.

In the dark of night, I imagine in detail where I am headed. I must admit that even as my legs begin to fail, I regard the prospect of a life sentence to a metal chair with special horror, as if I have been there before.

Will it be as awful as I anticipate? I seek out insight from those who know.

Bob Schmonsees has used a wheelchair since he was broadsided by another skier on a slope in Pennsylvania almost 30 years ago.

Do you regard this contraption as a prison? I ask.

"The situation was the prison, the chair an enabling factor," Bob replies after a moment's thought. Seven years after his accident, Bob realized he had been in denial and endured a short bout of depression. Then he got rolling again and proved he could still have a life. "I became the top-ranked player over 40 in wheelchair tennis," he says.

Was that liberating?

"Yes, and gratifying."

Bob continued as an avid golfer and even ventured back onto the ski slopes, though later he realized that skiing strained his shoulders. Ultimately, he gave up tennis, too, and now deals with the intestinal problems that go with sitting for so long. Still, "I have a good life," he says.

Then am I a wimp to fear a future in a chair?

"Absolutely not," comes his quick reply. "You are in a bad situation. This would be a traumatic change. Look, people make using a wheelchair worse than it is, but it ain't no fun."

Perhaps a wheelchair isn't inevitable for me. But in my gut, I believe it is. Eventually, my ability to ambulate will be gone. A walker is next. The rest will follow.

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