Just last week, this blog discussed the NY Times essay by Dudley Clendinen about living with ALS (aka amyotrophic lateral sclerosis or Lou Gehrig’s Disease) and his plans for his death. Clendinen’s definition of what constituted a meaningful life and his plans to end his life at a certain point moved columnist David Brooks 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.
That was last week. It seems that someone is messing up Clendinen’s carefully imagined plans for his exit by dangling something that would make living longer worthwhile. Maryland Morning reports:
Over the past few months, Dudley has been speaking with Tom Hall about living with ALS. In this conversation, they talk about the op-ed Dudley wrote for the New York Times, in which he discusses the right to control his own exit — the right to die.
The article generated an enormous response–our own website received thousands of hits from all over the world, David Brooks referenced it in a column about the cost of health care, and Dudley received hundreds of letters–including one from a publishing house offering him a book deal. “It’s a really big offer,” says Dudley. “It may be the best deal a dying write has had since Ulysses S. Grant.”
Dudley says that makes several things possible that he hadn’t thought were options. “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.”
Dudley says if he were to write the book, Whitney would help him as an assistant and contribute some writing to it. “It would give me an opportunity to involve her in my death, in my passage, in a way that’s creative and positive and would leave something tangible, something that we produced together that she would be proud of. It would be a bridge, I hope between now and later….that matters to me a lot.”
His choices are somewhat different now, and the scenario he once had planned out is now up in the air:
At this point, Dudley’s not sure how much longer he has to live. Part of that will be determined by whether he consents to a tracheotomy. “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.”
I’m not going to attempt to predict what Mr. Clendinen will do. The fact is, though, that he sees the possibility for doing something meaningful beyond a point in time when he previously thought that would be true. I hope David Brooks takes note that some publishers think at least this “self-enclosed skin bag” still has valuable contributions to make.
I won’t hold my breath waiting for that column, though.
A series of interviews with Mr. Clendinen can be accessed and heard at this link. –Stephen Drake
Too bad too many people are going to see this and think only that it involves “money.” Too bad that he might think so as well. But there is a deeper meaning to me: he has had his value as a person affirmed.
As long as he can wake up each day with an ambition to be happy, to contribute, to be heard, he will want to live. That’s my totally uneducated opinion, obviously. Add pain meds and sufficient attendant care, and he’s golden.
But I would be ignorant of reality if I were to suggest the money question could be ignored, especially when it is evident from his remarks that the “cost of being a crip” was weighing on him.
Being a crip is an expensive undertaking, no doubt about it.
What’s ironic too is that the money blew Brooks’ thesis out of the water.
Thank goodness.
I was so sick of hearing Dudley go on that way.
In any case, Dudley can heal himself and his life. Als is just a psychospiritual problem that manifests as physical illness.
Maybe this change is a step in a healing direction for him.