11-28-11: The Chance to Tell a Story
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, he talks about how a new book contract with Workman Publishing has given him a new sense of purpose. He received the contract after writing an op-ed in the New York Times about the decisions he’s making at the end of life.
Dudley says he’s lucky that he has this chance: “There are a lot of our friends who by the time they get to 60 or 70 are wise or savvy, have a sense of humor, and have some useful things to say. But most people don’t have an audience…thanks to various kinds of happenstance, I now have an audience. “
Dudley also says this will be a big undertaking, because he’s choosing to spend what he time he has left on deadline. “I’m going to have to negotiate some of my feelings. I said before I don’t want to live past the point where life feels worthwhile — friends, dinners, conversations…I’ve always thought when I can’t swallow, when I can’t talk, it’s hard to imagine life being purposeful enough to stick around. But now I have a contract and I have a purpose.”
The book contract is actually changing the decisions Dudley is making. “I may have to accept a tracheotomy. The problem is I can’t breathe very well. And when you can’t breathe very well, you don’t have much energy…Much as I hate that, I may well have to get a tracheotomy in order to keep going, and that may mean a feeding tube, and I really hate that. But because of the book, and the purposes it represents–the chance to tell a story that seems to be worth hearing–as a storyteller, I guess I have to feel its worth sharing. Most people don’t have that opportunity. I can’t kiss it off.”
In any event, Dudley says it all becomes grist for the mill. “It’s a race to the finish line between the body of mine and the quest to finish the damn book, and then I can exit….You can’t ever say what you would do in a different circumstance, because you never know what new odds will come to alter the equation.”
You can listen to all of our conversations with Dudley Clendinen at this link.
Earlier this year, we also spoke with ethicist Linda Ganzini about how others with terminal illness, like Dudley, change their minds as circumstances change. You can listen to that discussion here.