Thank God I found sobriety. I could sustain myself with my work, my reading, the movies, my friends. And walking, walking, walking. Of all the purposes of education, I think the most useful is this: It prepares you to keep yourself entertained. It gives you a better chance of an interesting job. ... I can't remember the last time I felt bored. I can't eat, drink or talk, and yet I have so many other resources to keep myself entertained. I think I must be a case study.

Look, life is pretty dreadful most of the time. Even in the country that's so pretty with the flowers and leaves and sunshine. And I was abandoned when he died! I'm alone. I feel like an old bubba. And I'm not kind all of the time, I'm not nice all the time.

Writing became a therapy. First of all, it meant I was reconstructing my own existence. It was also an act of defiance. I wasn’t supposed to write. ... I evolved all kinds of mental exercises, even went back to those subjects which I said I hated in school, in particular mathematics. ... You know, anything to keep the mind alive.

I was raised by a heroic single mom, wonderful grandparents -- made incredible sacrifices for me. … But I sure wish I had had a father who was not only present, but involved. Didn't know my dad. And so my whole life, I've tried to be for Michelle and my girls what my father was not for my mother and me. … I want to be a better father, a better husband, a better man.

I was forced to think very hard about what it meant to be me, what it means to be a person who is only a brain. Pascal's 'thinking reed' really does capture it, because I'm just a bunch of dead muscles thinking.

During the day I can at least request a scratch, an adjustment, a drink, or simply a gratuitous re-placement of my limbs—since enforced stillness for hours on end is not only physically uncomfortable but psychologically close to intolerable. It is not as though you lose the desire to stretch, to bend, to stand or lie or run or even exercise. But when the urge comes over you there is nothing—nothing—that you can do except seek some tiny substitute or else find a way to suppress the thought and the accompanying muscle memory.

My solution has been to scroll through my life, my thoughts, my fantasies, my memories, mis-memories, and the like until I have chanced upon events, people, or narratives that I can employ to divert my mind from the body in which it is encased. These mental exercises have to be interesting enough to hold my attention and see me through an intolerable itch in my inner ear or lower back; but they also have to be boring and predictable enough to serve as a reliable prelude and encouragement to sleep. It took me some time to identify this process as a workable alternative to insomnia and physical discomfort and it is by no means infallible. But I am occasionally astonished, when I reflect upon the matter, at how readily I seem to get through, night after night, week after week, month after month, what was once an almost insufferable nocturnal ordeal. I wake up in exactly the position, frame of mind, and state of suspended despair with which I went to bed—which in the circumstances might be thought a considerable achievement.

This cockroach-like existence is cumulatively intolerable even though on any given night it is perfectly manageable. “Cockroach” is of course an allusion to Kafka’s Metamorphosis, in which the protagonist wakes up one morning to discover that he has been transformed into an insect. The point of the story is as much the responses and incomprehension of his family as it is the account of his own sensations, and it is hard to resist the thought that even the best-meaning and most generously thoughtful friend or relative cannot hope to understand the sense of isolation and imprisonment that this disease imposes upon its victims.

So it seems to be my responsibility, particularly to my children, also to my wife and friends, is not to be Pollyanna and pretend everything's okay no one would take me seriously if I said that but it's to be as present in their lives now as I can be so that in years to come, they don't feel either guilty or bad at my having been left out of their lives, that they feel still a very strong not a memory of particular actions but a memory of a complete family rather than a broken one. That seems to be something I can do or try to do.

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.