Dudley Clendinen is a former editor at the AJC, among other places, although I do not know him personally. His time here in Atlanta did not coincide with mine.
Last year, Clendinen was diagnosed with amyotrophic lateral sclerosis, better known as Lou Gehrig’s disease. In an essay in last weekend’s New York Times, he writes about how heartened he has been by the way his friends and relatives have rallied around him.
” … one, from Texas, put a hand on my thinning shoulder and appeared to study the ground where we were standing. He had flown in to see me.
“We need to go buy you a pistol, don’t we?” he asked quietly. He meant to shoot myself with.
“Yes, Sweet Thing,” I said, with a smile. “We do.”
I loved him for that.
As Clendinen notes, ALS — or “Lou,” as he calls it — is “not a kind disease.”
“The nerves and muscles pulse and twitch, and progressively, they die. From the outside, it looks like the ripple of piano keys in the muscles under my skin. From the inside, it feels like anxious butterflies, trying to get out. It starts in the hands and feet and works its way up and in, or it begins in the muscles of the mouth and throat and chest and abdomen, and works its way down and out. The second way is called bulbar, and that’s the way it is with me. We don’t live as long, because it affects our ability to breathe early on, and it just gets worse. “
Having thought about it long and hard, and having witnessed the long, drawn-out death of his mother, Clendinen has made a decision.
“If I choose to have the tracheotomy that I will need in the next several months to avoid choking and perhaps dying of aspiration pneumonia, the respirator and the staff and support system necessary to maintain me will easily cost half a million dollars a year. Whose half a million, I don’t know.
I’d rather die.”
No, Clendinen writes, he won’t do it by firearm. But he will do it, and has apparently made arrangements so that he’s ready when he decides the time has come.
Reading Clendinen’s essay, I couldn’t help but notice the contrast with the approach taken by another journalist, a man I did know. Brian Dickinson, the editorial page editor and columnist of the Providence (R.I.) Journal, was a man of charisma and talent. Like Clendinen, he was diagnosed with ALS.
Brian, however, chose to play it out all the way to the end. He lived for a decade after his initial diagnosis, a decade of decline and stubborn refusal. “Except for the fact that I can still manage a smile and still have full control of my eye muscles, I could almost be taken for some outlandish display in Madame Tussaud’s wax museum,” he wrote in 1998, six years into his sentence. In those last years, technology allowed Dickinson to communicate and even write regular columns through the blinking of his eyes.
“Combat against ALS is its own reward,” he wrote. “The disease now defines the terms of my existence. If I were to cave in too easily, I would be violating the terms of an implicit contract that I had with someone.”
I would not judge either man. The course each chose requires its own sort of bravery, and the decision they faced is perhaps the most personal, intimate decision that human intelligence allows or condemns us to make.
Like emissaries from a land we hope we never visit, Dickinson and Clendinen have each tried to tell us how it feels and what it means to face such a situation, but perhaps the most important lesson they teach is that human beings will respond to the same predicament very differently, and should be allowed the freedom to do so.
– Jay Bookman