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.

From the moment I resolved and reconciled things with Gail the fear went. I don't feel I've got any fear now. I think acceptance is the key. If you accept death, fear disappears.

The chief side effect of this pain is numbness in the extremities, filling me with the not irrational fear that I shall lose the ability to write. Without that ability, I feel sure in advance, my “will to live” would be hugely attenuated. I often grandly say that writing is not just my living and my livelihood but my very life, and it’s true. Almost like the threatened loss of my voice, which is currently being alleviated by some temporary injections into my vocal folds, I feel my personality and identity dissolving as I contemplate dead hands and the loss of the transmission belts that connect me to writing and thinking.

Did the Victorians fear death? As Death says in one of my own books, most men don't fear death, they fear those things – the knife, the shipwreck, the illness, the bomb – that proceed, by micro seconds if you're lucky and many years if you're not, the moment of death.

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.

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.

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.

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.

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.

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.