Everyone succumbs to finitude. I suspect I am not the only one who reaches this pluperfect state. Most ambitions are either achieved or abandoned; either way, they belong to the past. The future, instead of the ladder toward the goals of life, flattens out into a perpetual present. Money, status, all the vanities the preacher of Ecclesiastes described, hold so little interest: a chasing after wind, indeed.

When I was a child the mailman came once a day. Now the mail arrives every moment. I used to believe it was preposterous that people could fall in love online. Now I see that all relationships are virtual, even those that take place in person. Whether we use our bodies or a keyboard, it all comes down to two minds crying out from their solitude.

The stroke cut out a lot of my external trips: my sports car and golf and my cello. This [ points to hand ] is just not much use with a cello, and I was—forced inside, and finding myself living in my inside. And that has made me be part of my soul. And that's perceiving my incarnation from here [ points to heart ], rather than from here [ points to head ]. And since this is words, I start from here, go over there.

My generation is on the way out, and each death I have felt as an abruption, a tearing away of part of myself. There will be no one like us when we are gone, but then there is no one like anyone else, ever. When people die, they cannot be replaced. They leave holes that cannot be filled, for it is the fate — the genetic and neural fate — of every human being to be a unique individual, to find his own path, to live his own life, to die his own death.

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.

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.

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.

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.