But Larkin was different. He knew it would end in silence, and he was afraid of the silence. He didn’t like the idea of not being here. I’m not like that – and my death might come as a relief to quite a few people. I’d rather like it not to hurt, that’s all.

I don’t fucking know. I keep thinking I’ll die. Why do you think I smoke so much?

I don’t think so! You can’t really know that until the moment of your death, at which point you will probably not be afraid because you won’t be there. I have a very old friend who called me last year to say, “Okay I am done. I am not fighting this anymore. I am checking out. I am calling to say goodbye because I am not really conscious most of the time. I am cutting off the pain killers.” He seemed okay. That was not the moment of his death, but it was within two or three days.

Of dying, only if painful and protracted, or if I get stuck inside an inert body. I would also not wish to be trapped in a jar.

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 see the future as something that could come crashing down very fast. Let me put it slightly by way of a comparison. Normal people, and I use the term very deliberately, by this not otherwise able situation - I'm disabled. I'm abnormal. Normal people dont think very much about the medium term future. They think only about the present, which is constantly changing for them or the very far future, which is just an abstraction. For me, its the other way around, my present never changes. So I dont really think about. But the medium term involves my death so I'm quite conscious of what is going to happen to me in about a year, maybe two years, who knows, whereas no one else I know thinks like that.

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.

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.

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.