I could be strong and not tough. I could be kind without being soft. ... But in that moment, that olive branch of kindness was actually one that became a physical hug, and I think it taught me and the room a lot. And I said: You know what? I think this is an advantage.

There were so many needs for us to continue to work for freedom, because I didn’t think that we should have to be treated in the way we were, just for the sake of white supremacy, because it was designed to make them feel superior, and us feel inferior. That was the whole plan of racially enforced segregation.

The movement has perfected a rarefied form of America’s addiction to self-rule, which denies much of our humanity: our fragile bodies, our finitude, our need to stare down our deaths (at least once in a while) and be filled with dread and wonder. At some point, we must say to ourselves, I’m going to need to let go.

There is always an impulse to degrade people who are different from you, to diminish them, to demean them, and it never seems to go away, even when there is ample evidence that when we work together, we do better. It’s not about material progress or personal comfort. It’s about personal identity, and there are still so many forces at work in the human psyche that lead some people to think that their identity requires them to have someone to look down on or to demean or to feel that they’re superior to, and I think that that’s at the root of all this. It’s the only story in human society. Who is the other? Who is one of yours? Cain and Abel.

But the satisfactions of compensation are notoriously fleeting. There is no saving grace in being confined to an iron suit, cold and unforgiving. The pleasures of mental agility are much overstated, inevitably—as it now appears to me—by those not exclusively dependent upon them. Much the same can be said of well-meaning encouragements to find nonphysical compensations for physical inadequacy. That way lies futility. Loss is loss, and nothing is gained by calling it by a nicer name. My nights are intriguing; but I could do without them.

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.

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.

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.

I think the only life experience that I have to offer out of this is something we all know in the abstract but don't experience in practice very much. That is that you can survive an awful lot of bad stuff, so long as your mind is intact. I'm afraid that's the only life experience I have to offer.

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.