December 1, 2009
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.
Now a startling admission: I am a wimp. When I was chased through the streets of Warsaw covering the rise of Solidarity for CBS News, or when I ducked bullets in Beirut and El Salvador, I learned to be resourceful. I also came to know mortality and the truth that anything can happen. But now I am covering a different war, with an enemy hidden in my body. And this is the first enemy I truly fear.
I talk to Allen Rucker, who has transverse myelitis, which some people call MS of the spine, another autoimmune disease. “It was frightening,” he says of the moment when he realized that he was paralyzed. 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,” he tells me. “My favorite recreation was to wait until three in the morning and tool around Cedars-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,” he tells me. “You already are preparing yourself for what might be.”
Allen pauses for emphasis.
“You are on this gradual course,” he continues. “You don’t know it, but you will find it liberating. There is true mobility in a wheelchair. It’s not a horrible thing. You should lighten up.”
“There always will be the stigma,” he concedes. “People will still think you are a pathetic person. There will be a sense of pity, a sort of death by kindness. You will learn to ignore it.”
Hard to imagine. And pointless, too. What will be will be. I have better things to do than play out worst-case scenarios. I understand risk. I loved toying with it when I was younger.
And yet the wheelchair is so threatening, perhaps because it’s the final public signal of unbeatable weakness and the irrevocable admission that I have 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.