Interview Highlights
On how living with ALS makes him feel:
"You mustn't focus on what you can't do. If you sit around and think, 'I wish I could walk,' then you'll just be miserable. But if you sit and turn around and think, 'What's the next piece I'm going to write?' then you may not be happy, but you certainly won't wallow in misery. So it's an active choice every day to renew my interest in something that my head can do, so I don't think about the body."
On what he has learned from his ALS:
"Unlike cancer, which I've had in the past, or AIDS or some other major organic breakdown or disease, no one has any ideas how to fight it. So once you get past the thought that this is ridiculous — Why can't they do something? — you stop thinking of your body as the object to fight. ... I was a very controlling person. And for me, I did not like to be in the push car, to be in the stroller — because it meant my mother was in charge. ... And from very early on, I've hated depending on the kindness of others. And I'm learning to do so, and it's a very good sentimental education."
On what gives him pleasure:
"The thing about ALS is that there are only two things left, beyond your head, which still work. One is the reproductory apparatus, and one is the excretory apparatus. Then you keep those until you die. So you still get pleasure from sex, and you can still get pleasure from anything you can see, anything you can say — and although this may not last much longer, anything you can eat. ... Sometimes, I think, well, all the good things in life are still with me. Food. Sex. Videotapes. I've got it all — what's the problem?
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