A few years back, Dudley Clendinen wrote a NY Times essay about living with ALS, his definition of what constituted a meaningful life, and his plans to end his life at a certain point. In the column, he wrote frankly not only about the disease but about his decision that, before he reached its final stages, he might kill himself. "No thank you," he wrote, "I hate being a drag. I don't think I'll stick around for the back half of Lou." He received thousands of responses from around the world, most of them supportive. NY Times columnist David Brooks was moved to not only applaud Clendinen’s decision, but to suggest that more “self-enclosed skin bags” should make early exits for the good of the economy. “t is hard to see us reducing health care inflation seriously unless people and their families are willing to do what Clendinen is doing — confront death and their obligations to the living.”
A publishing house offered Clendinen a book deal, “a really big offer,” Clendinen said. “I’ve been broke for 20 years, so the thought of actually being affluent for the last part of my life…is very appealing. I would love to pay my debts. I have considerable debts. It matters to me that I be able to pay them. It would matter to [my daughter] Whitney because she wouldn’t have such a messy estate to deal with.”
Regarding the option of a tracheotomy, Clendinen wrote, “I don’t want to. If I don’t, I might wink out this fall. If I do, then I could prolong it. It poses this kind of difficult personal, moral, and physical choice. Is a book worth posing this possibility of my needing to consent to a surgery that would cut a hole in my throat to insert tubes so that I could stay alive long enough to write the book? Which is not something I had planned to do. The answer at this point is—maybe.”
After much soul searching, Clendinen consented to a feeding tube and, in the end, passed away peacefully without taking steps to end his own life.
So let’s look at the social factors involved in this story:
- The responses from people of around the world supporting Clendinen’s announcement that he planned an early exit
- The columnist who called PALS “self-enclosed skin bags” who should make early exits for the good of the economy
- The cost of health care
- “Obligations to the living”
- The “messy estate” Clendinen’s daughter would have to deal with
- The publishers who thought Clendinen still had valuable contributions to make
- The arrival of money after being broke
Clendinen’s choices were his own to make, but he did not make them in a social vacuum. My applause goes to those who helped Clendinen see the possibility for making valuable contributions and doing something meaningful beyond a point when he previously thought that would be true.
As for those who wrote in support of Clendinen’s announcement that he planned an early exit, I will not express my view, as it will certainly provoke a negative response from certain forum moderators. In fact, this forum has become so unsavory when the value of human life is discussed, I have elected to stop visiting it. I will instead be devoting my time to educating ALSA executives and employees about health care rights of PALS so they can be better advocates for the home health care and durable medical equipment that PALS are too often denied in the present social environment.
In leaving, I would like to close with some words by E.E. Cummings:
i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go,my dear;and whatever is done
by only me is your doing,my darling) i fear
no fate(for you are my fate,my sweet)i want
no world(for beautiful you are my world,my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you
here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart
i carry your heart(i carry it in my heart)
