Dudley Clendinen has ALS (that pic is not of him):
“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.
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.”
This goes right along with what I’ve been reading in A Year To Live.
“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.”