TEDChris: The untweetable

Shaking Hands with Death 

My name is Terry Pratchett and I am the author of a very large number of inexplicably popular fantasy novels.

Contrary to popular belief, fantasy is not about making things up. The world is stuffed full of things. It is almost impossible to invent any more. No, the role of fantasy as defined by G K Chesterton is to take what is normal and everyday and usual and unregarded, and turn it around and show it to the audience from a different direction, so that they look at it once again with new eyes.

I intend tonight to talk about Alzheimer’s disease, which I am glad to say is no longer in the twilight, but also about another once taboo subject, the nature of our relationship with death.

When I was a young boy, playing on the floor of my grandmother's front room, I glanced up at the television and saw death, talking to a Knight and I didn't know very much about death at that point. It was the thing that happened to budgerigars and hamsters. But it was death, with a scythe and an amiable manner. I didn't know it at the time, of course, but I had just watched a clip from Bergman's Seventh Seal, wherein the Knight engages in protracted dialogue, and of course the famous chess game, with the Grim Reaper who, it seemed to me, did not seem so terribly grim.

The image has remained with me ever since and death as a character appeared in the very first of my Discworld novels. He has evolved in the series to be one of its most popular characters; implacable, because that is his job, he nevertheless appears to have some sneaking regard and compassion for a race of creatures which are to him as ephemeral as mayflies, but which nevertheless spend their brief lives making rules for the universe and counting the stars.

Alzheimer's creeps up very gently over a long period of time, possibly decades, and Baby Boomers like myself, know that we are never going to die so always have an explanation ready for life’s little hiccups. We say, "I've had a senior moment. Ha! Ha!" we say, "everybody loses their car keys," we say, “oh, I do that, too. I often go upstairs and forget what I have come up for!” we say, “I often forget someone’s name mid sentence” and thus we are complicit in one another’s determination not to be mortal.

I have touch typed since I was 13, but now that was going wrong. I got new spectacles. I bought a better keyboard, not such a bad idea since the old one was full of beard hairs and coffee, and finally at the end of self-delusion I went to see my GP. Slightly apologetically she gave me the standard Alzheimer's test, with such taxing questions as “what day of the week is it?” and then sent me off locally for a scan. The result? I didn't have Alzheimer's.

So off I went, reassured, about my business; I did a signing tour in Russia, a signing tour in the USA, which included breakfast at the White House, (there were lots of other people there, it wasn’t as if I handed Mrs Bush the cornflakes or anything) and then I did a signing tour in Italy, where the wife of our Ambassador very diplomatically pointed out that I had made a fist of buttoning up my shirt. Well, I had got up early for the flight, and had dressed in the dark, and so we all had a little chuckle, followed by lunch, and I hoped that everyone but me forgot about it.

Back home my typing was now so full of mistakes that it was simpler for me to dictate to my personal assistant. I went to see my GP again and she sent me to  Addenbrooke’s  Hospital in Cambridge. I have never discussed the interview with her, but either by luck or prescience, I ended up in front of Dr Peter Nestor one of the few specialists in the country, or maybe the world, who would recognise Posterior Cortical Atrophy, the rare variant of my disease. He and his colleagues put me through a battery of tests, and he looked again at my scans, this time, importantly, in a different place. When he gave me the news that I had a rare form of Alzheimer's disease I quite genuinely saw him outlined in a rectangle of flaming red lines. We had a little bit of a discussion, and then, because the facility was closing for the day, I went home, passing another doctor putting on his bicycle clips – this was Cambridge, after all, and such was my state of mind that he too was outlined in red fire. The whole world had changed.

I was lucky in several ways. PCA is sufficiently different from 'classic' Alzheimer's that I have met fellow sufferers who dislike it being linked with that disease, even though the pathology and the endgame are ultimately the same. The journey, however, is different. PCA manifests itself through sight problems, and difficulty with topological tasks, such as buttoning up a shirt. I have the opposite of a superpower; sometimes, I cannot see what is there. I see the teacup with my eyes, but my brain refuses to send me the teacup message.

The first draft of this speech was dictated using TalkingPoint on my computer which, while not perfect, produces a result that is marvellously better than anything I could tap out on the keyboard. From the inside, the disease makes me believe that I am constantly being followed by an invisible moron who moves things, steals things, hides things that I had put down a second before and in general, sometimes causes me to yell with frustration. You see, the disease moves slowly, but you know it’s there. Imagine that you’re in a very, very slow motion car crash. Nothing much seems to be happening. There’s an occasional little bang, a crunch, a screw pops out and spins across the dashboard as if we’re in Apollo 13. But the radio is still playing, the heater is on and it doesn’t seem all that bad, except for the certain knowledge that sooner or later you will be definitely going headfirst through the windscreen.

I have heard it said that some people feel that they are being avoided once the news gets around that they have Alzheimer's. For me it has been just the reverse. People want to talk to me, on city streets, in theatre queues, on aeroplanes over the Atlantic, even on country walks. They want to tell me about their mother, their husband, their grandmother. Sometimes it is clear to me that they are extremely frightened. And increasingly, they want to talk about what I prefer to call “assisted death”, but which is still called, wrongly in my opinion, “assisted suicide".

The people who thus far have made the harrowing trip to Dignitas in Switzerland to die seemed to me to be very firm and methodical of purpose, with a clear prima-face case for wanting their death to be on their own terms. In short, their mind may well be in better balance than the world around them.

I got involved in the debate surrounding “assisted death” by accident after taking a long and, yes, informed look at my future as someone with Alzheimer’s and subsequently writing an article about my conclusions. As a result of my “coming out” about the disease I now have contacts in medical research industries all over the world, and I have no reason to believe that a “cure” is imminent.

I said earlier that PCA at the end game is effectively the same as Alzheimer's and that it is the most feared disease among the elderly and although I was diagnosed when I was 59, it has struck adults in their thirties. I enjoy my life, and wish to continue it for as long as I am still myself, knowing who I am and recognising my nearest and dearest. But I know enough about the endgame to be fearful of it, despite the fact that as a wealthy man I could probably shield myself from the worst.

I have made my position publicly clear; this seems to me quite a reasonable and sensible decision for someone with a serious, incurable and debilitating disease to elect for a medically assisted death by appointment.

A major objection frequently flourished by opponents of “assisted dying” is that elderly people might be illegally persuaded into “asking” for assisted death. Could be, but the Journal of Medical Ethics reported in 2007 that there was no evidence of the abuse of vulnerable patients in Oregon where assisted dying is currently legal.

That’s why I and others have suggested some kind of strictly non-aggressive tribunal that would establish the facts of the case well before the assisted death takes place.

The members of the tribunal would be acting for the good of society as well as that of the applicant, horrible word, and ensure they are of sound and informed mind, firm in their purpose, suffering from a life threatening and incurable disease and not under the influence of a third party. It would need wiser heads than mine, though heaven knows they should be easy enough to find, to determine how such tribunals are constituted. But I would suggest there should be a lawyer, one with expertise in dynastic family affairs who has become good at recognising what somebody really means and indeed, if there is outside pressure. And a medical practitioner experienced in dealing with the complexities of serious long term illnesses.

Those opposing “assisted death” say that the vulnerable must be protected, as if that would not have occurred to anyone else. As a matter of fact there is no evidence – and evidence has been sought – that anywhere in the world where assisted dying is practiced, of the sick or elderly being cajoled into assisted death by relatives and I see no reason to believe why that would be the case here. Doctors tell me that, to the contrary, family members more often beg them to keep granny alive even when granny is indeed, by all medical standards, at the end of her natural life. Importantly, the tribunal would also serve to prevent, as much as humanly possible, any abuses.

Let us consider me as a test case. As I have said, I would like to die peacefully with Thomas Tallis on my iPod before the disease takes me over and I hope that will not be for quite some time to come, because if I knew that I could die at any time I wanted, then suddenly every day would be as precious as a million pounds. If I knew that I could die, I would live. My life, my death, my choice.