Support the news

Dudley Clendinen On ALS: When It's Time To 'Buy A Pistol'

This article is more than 8 years old.
Dudley Clendinen and his daughter Whitney in 2007
Dudley Clendinen and his daughter Whitney in 2007

Warning: Do not read Dudley Clendinen's essay about planning his own death unless you're in a place where you can leak tears.

Dudley has outdone himself, and that is saying a lot. We've linked before, here and here, to his heartbreaking, heroic radio broadcasts for WYPR about his ALS, or Lou Gehrig's Disease.

Now Dudley, a former New York Times reporter in Boston and editorial writer, has switched back to print, in this New York Times essay titled "The Good Short Life."

Dudley had spoken in his broadcasts about grappling with his diagnosis and the steep decline it means for him. He talked about "doing the math" of his life, figuring out what he wanted to "add to the pile." About trying to "defang" his dying for his loved ones by writing them long, entertaining letters. And about the odd liberation that comes when you know you're dying and don't have to worry anymore about what you eat or wear. With his extraordinary gift for storytelling, Dudley is effectively giving us "death lessons," letting us watch him go out with style. He talks about seeking the "responsible, grown-up, good-humored" way to prepare for death.

Now, in the Times, he translates that quest into a concrete plan: He doesn't plan to ride his A.L.S. all the way down into total paralysis. A friend comments that "We need to go buy you a pistol, don't we?" And he replies with a smile, "Yes, Sweet Thing. We do." He writes:

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.

No, thank you. I hate being a drag. I don’t think I’ll stick around for the back half of Lou.

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.

I've never seen anyone face death with such joie-de-vivre. When he makes me cry, I can't tell whether it's because it's all so damned sad or so damned beautiful. I only know that when my time comes, I'm going to try to channel Dudley.

A policy moment: His piece raises a ticklish question about paying the monumental costs of end-of-life care. He writes:

Lingering would be a colossal waste of love and money.

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. I respect the wishes of people who want to live as long as they can. But I would like the same respect for those of us who decide — rationally — not to. I’ve done my homework. I have a plan. If I get pneumonia, I’ll let it snuff me out. If not, there are those other ways. I just have to act while my hands still work: the gun, narcotics, sharp blades, a plastic bag, a fast car, over-the-counter drugs, oleander tea (the polite Southern way), carbon monoxide, even helium. That would give me a really funny voice at the end.

Actually, we know who generally foots those half-million-dollar bills: other premium payers if it's private insurance, taxpayers if it's public insurance like Medicare. Dudley, in effect, acts as his own death panel. But he's the one deciding, and his decision strikes me as noble. I'm not sure I'd have the same courage but I deeply admire his.

Just one quibble. His piece on nytimes.com doesn't allow comments, but CommonHealth received one on a previous post in reaction to his piece, specifically to this sentence:

"I have found the way. Not a gun. A way that’s quiet and calm."

The commenter wrote, in part:

...Just read Dudley's piece in the NYT published today — wonderful! Dudley should be the spokesperson for we of the "neo-older" generation, anticipating the end.

Only wish Dudley had been more specific and mentioned the drug or whatever method he said he recently discovered, non-violent and peaceful, thereby avoiding the "final gun". After all, what does he have to lose?

This program aired on July 11, 2011. The audio for this program is not available.

Carey Goldberg Twitter Editor, CommonHealth
Carey Goldberg is the editor of WBUR's CommonHealth section.

More…

+Join the discussion
TwitterfacebookEmail

Support the news