One thing, it's too big a subject and I want to talk about it on paper if I talk about it at all. But I can say this much, because I thought the life that my father and mother would have had together was cut short and something of what they might have achieved I hope that I'm achieving in my work.

Deprivation of the ability to speak is more like an attack of impotence, or the amputation of part of the personality. To a great degree, in public and private, I “was” my voice. All the rituals and etiquette of conversation, from clearing the throat in preparation for the telling of an extremely long and taxing joke to (in younger days) trying to make my proposals more persuasive as I sank the tone by a strategic octave of shame, were innate and essential to me. I have never been able to sing, but I could once recite poetry and quote prose and was sometimes even asked to do so.

Well, then of course, came the disaster in 1975, when my wife and my youngest daughter were flying into the Nepal hills where I was building a hospital and their plane crashed and they were killed. And this certainly, for me, was an absolute disaster, really because the two people that meant most to me in life had been killed in one fell swoop. It did take me quite a number of years to get over it. I found the only way to deal with it was to carry on very energetically, doing the things that we had all been doing together, which was largely building schools and things for the mountain people. Although, people used to say to me, “Time is the great healer,” certainly for the first two years I simply didn’t accept this. But, time was a great healer and after the years passed, the memories still remain. But, I think quite a lot of the pain tends to fade a little bit, and life did become a little bit easier.

I think the turning point was when my daughter turned 17, and I drank 17 glasses of wine straight. ... But that was my escape from everything I had gone through from the movement — because even as we did the movement, there were traumas that were piling up.

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.

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 don't believe in an afterlife. I don't believe in a single or multiple godhead. I respect people who do, but I don't believe it myself. But there's a big but which enters in here. I am much more conscious than I ever was, for obvious reasons, of what it will mean to people left behind once I'm dead. It won't mean anything for me. But it will mean a lot to them. ... So in one curious way I've come to believe in the afterlife as a place where I still have moral responsibilities, just as I do in this life except that I can only exercise them before I get there. Once I get there, it'll be too late.

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.

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.