7-25-11: A Legacy Worth Attempting
There is no known cure for ALS, and once a person is diagnosed, they usually live between 1.5 to 3 years.
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.”
But Dudley says the opportunity to write a book also poses some difficult questions. “If I’m going to wink out as soon as I think I might, do I actually have time to write a book? Do I actually have the energy? My hands are getting weaker day by day. My breathing is getting wheezier day by day. If I agree to do this, it’s really going to be pushing it.”
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.”
“Also, if I commit to doing this book, it’s going to eat up my remaining good time. . . My elective time is spent in the company of friends. I visit them; they come here. It’s a joy. If I commit to doing this book, it’s going to take a lot of joy out of my life on the premise that I’ll bring some satisfaction and happiness to my daughter, and some checks for my creditors, and some legacy that might be worth attempting.”
You can listen to all of our conversations with Dudley Clendinen at this link.