Courage

Below are excerpts from an article at The New York Times. The full article may be read here.

The Good Short Life

By DUDLEY CLENDINEN

BALTIMORE

I HAVE wonderful friends. In this last year, one took me to Istanbul. One gave me a box of hand-crafted chocolates. Fifteen of them held two rousing, pre-posthumous wakes for me. Several wrote large checks. Two sent me a boxed set of all the Bach sacred cantatas. And 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.

I love them all. I am acutely lucky in my family and friends, and in my daughter, my work and my life. But I have amyotrophic lateral sclerosis, or A.L.S., more kindly known as Lou Gehrig’s disease, for the great Yankee hitter and first baseman who was told he had it in 1939, accepted the verdict with such famous grace, and died less than two years later. He was almost 38.

I sometimes call it Lou, in his honor, and because the familiar feels less threatening. But 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.

At the moment, for 66, I look pretty good. I’ve lost 20 pounds. My face is thinner. I even get some “Hey, there, Big Boy,” looks, which I like. I think of it as my cosmetic phase. But it’s hard to smile, and chew. I’m short of breath. I choke a lot. I sound like a wheezy, lisping drunk. For a recovering alcoholic, it’s really annoying.

There is no meaningful treatment. No cure. There is one medication, Rilutek, which might make a few months’ difference. It retails for about $14,000 a year. That doesn’t seem worthwhile to me. If I let this run the whole course, with all the human, medical, technological and loving support I will start to need just months from now, it will leave me, in 5 or 8 or 12 or more years, a conscious but motionless, mute, withered, incontinent mummy of my former self. Maintained by feeding and waste tubes, breathing and suctioning machines.
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I think it’s important to say that. We obsess in this country about how to eat and dress and drink, about finding a job and a mate. About having sex and children. About how to live. But we don’t talk about how to die. We act as if facing death weren’t one of life’s greatest, most absorbing thrills and challenges. Believe me, it is. This is not dull. But we have to be able to see doctors and machines, medical and insurance systems, family and friends and religions as informative — not governing — in order to be free.

And that’s the point. This is not about one particular disease or even about Death. It’s about Life, when you know there’s not much left. That is the weird blessing of Lou. There is no escape, and nothing much to do. It’s liberating.

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Last month, an old friend brought me a recording of the greatest concert he’d ever heard, Leonard Cohen, live, in London, three years ago. It’s powerful, haunting music, by a poet, composer and singer whose life has been as tough and sinewy and loving as an old tree.

The song that transfixed me, words and music, was “Dance Me to the End of Love.” That’s the way I feel about this time. I’m dancing, spinning around, happy in the last rhythms of the life I love. When the music stops — when I can’t tie my bow tie, tell a funny story, walk my dog, talk with Whitney, kiss someone special, or tap out lines like this — I’ll know that Life is over.

It’s time to be gone.