Wednesday, April 7, 2010
He introduced a new term into my hallway lexicon: "Facial tupperware" (to refer to his non-invasive ventilator).
The entire forty minutes is worth a listen but he poignantly tells Terry about his advance directive towards the end:
"In my practical terms what I've done long since is set out both in my will I had something called a proxy for health care, what is to be done with me under certain circumstances. That is to say if I went into the hospital for some minor operation but they had to put a tube down my throat and they couldnt take it out because it's sometimes very difficult with ALS, so they had to do a tracheostomy and pop a little tube down my neck from the outside to keep me going, I would very specifically say dont do it. And beyond that, if nothing goes wrong, I think I would probably want, as many other people in my situation I believe have wanted, to be allowed to die with minimal pain and discomfort. I don't know how that would affect my children. We've only talked about it in great abstraction. They're age 15 and 13. But I know that my wife, who obviously finds the prospect horrific, understands why I think like that.You can read his New York Review of Books essay "Night" here.
.....I can only speculate on the basis of observing what it is like for ALS patients after that point and speculating on my own likely mood at that point. But I will tell you this, that at the moment, for good or ill, I am in charge of the spaces I occupy. I write. I dictate. I talk. I advise, etcetera. But if I was sitting in an armchair with bits and pieces of rubber sticking out of me and my son came over and said, you know, would you like a banana? Wink once for yes, wink twice for no, I dont think the interest of the conversation would get me past the sense that this is horrible. It's horrible for me but above all, horrible for them. There are things worse than death."