"I'm not scared of dying . . ."
That song by Blood, Sweat and Tears has been playing on my mind since the day before yesterday, when I sat down with a coffee to read the New York Times and came upon an article by the former NYT writer Dudley Clendinen, "The Good Short Life" (July 9, 2011), on how he's preparing for his inevitable death within the next several months as he declines because of amyotrophic lateral sclerosis, best known as Lou Gehrig's disease. He faces the facts:
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.There's no circumventing this death, no loophole, no hope for a meaningfully longer life:
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.It's not a very happy disease, not what Simone de Beauvoir would call Une mort très douce, and when he first learned the official diagnosis, he was stopped short:
No, thank you. I hate being a drag. I don't think I'll stick around for the back half of Lou.
When the neurologist gave me the diagnosis that November, he shook my hand with a cracked smile and released me to the chill, empty gray parking lot below.But life goes on, such as it does, and so does his, even if that final, beckoning appointment is closer than he would like, though he intends to take control over that moment. In the meantime, he doesn't have to "worry about fatty foods anymore" or "about having enough money to grow old," and he's enjoying the last days of his life:
It was twilight. He had confirmed what I had suspected through six months of tests by other specialists looking for other explanations. But suspicion and certainty are two different things. Standing there, it suddenly hit me that I was going to die. "I'm not prepared for this," I thought. "I don't know whether to stand here, get in the car, sit in it, or drive. To where? Why?"
I'm having a wonderful time.And he's listening to music:
I have a bright, beautiful, talented daughter who lives close by, the gift of my life. I don't know if she approves. But she understands. Leaving her is the one thing I hate. But all I can do is to give her a daddy who was vital to the end, and knew when to leave. What else is there? I spend a lot of time writing letters and notes, and taping conversations about this time, which I think of as the Good Short Life (and Loving Exit), for WYPR-FM, the main NPR station in Baltimore. I want to take the sting out of it, to make it easier to talk about death. I am terribly behind in my notes, but people are incredibly patient and nice. And inviting. I have invitations galore.
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.A poignant end.
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 [my daughter] Whitney, kiss someone special, or tap out lines like this -- I'll know that Life is over.
It's time to be gone.