A bee in my bonnet – whether that’s a song in my head or a person I’m thinking about.

My husband snoring.

Rats scurrying in the roof. I won the last war but it’s only a matter of time.

I am an insomniac, so I often draw and write at night.

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.

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 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.

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 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.