I have regrettably to point out that the nature of my disease may not allow me to read all the way through this lecture. If this is the case, we have arranged for my friend Tony Robinson, who made a very moving programme about his own mother’s struggle with dementia, to step in and be your stunt Terry Pratchett for the evening.
I’m sure you know that, for my sins, which I wish I could remember because they must have been crimson, I am effectively “Mr. Alzheimer’s” and I have given more interviews on the subject than I can remember. But there are others, less well known, who have various forms of dementia and go out and about being ambassadors for the Alzheimer’s Society in their fight against the wretched disease. It’s not just me, by a long way. They are unsung heroes and I salute them.
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. He is, in short, a kindly Death, cleaning up the mess that this life leaves, and opening the gate to the next one. Indeed, in some religions he is an angel.
People have written to me about him from convents, ecclesiastical palaces, funeral parlours and. not least, hospices. The letters I’ve had from people all around the world have sometimes made me give up writing for the day and take a long walk. It is touching, and possibly worrying that people will write, with some difficulty, a six-page letter to an author they have never met, and include in it sentiments that I very much doubt they would share with their doctor.
I have no clear recollection of the death of my grandparents, but my paternal grandfather died in the ambulance on the way to hospital just after having cooked and eaten his own dinner at the age of ninety-six. (It turned out, when we found his birth certificate, that he was really ninety-four, but he was proud of being ninety-six, so I hope that no celestial being was kind enough to disillusion him.)
He had felt very odd, got a neighbour to ring for the doctor, and stepped tidily into the ambulance and out of the world. He died on the way to the hospital—a good death if ever there was one. Except that, according to my father, he did complain to the ambulance men that he hadn’t had time to finish his pudding. I am not at all sure about the truth of this, because my father had a finely tuned sense of humour which he was good enough to bequeath to me, presumably to make up for the weak bladder, the short stature, and the male-pattern baldness, which regrettably came with the package.
My father’s own death was more protracted. He had a year’s warning. It was pancreatic cancer. Technology kept him alive, at home and in a state of reasonable comfort and cheerfulness for that year, during which we had those conversations that you have with a dying parent. Perhaps it is when you truly get to know them, when you realize that it is now you marching towards the sound of the guns and you are ready to listen to the advice and reminiscences that life was too crowded for up to that point. He unloaded all the anecdotes that I had heard before, about his time in India during the war, and came up with a few more that I had never heard. As with so many men of his generation, his wartime service was never far from his recollection. Then, at one point, he suddenly looked up and said, “I can feel the sun of India on my face,” and his face did light up rather magically, brighter and happier than I had seen it at any time in the previous year and if there had been any justice or even narrative sensibility in the universe, he would have died there and then, shading his eyes from the sun of Karachi.
He did not.
On the day he was diagnosed my father told me, and I quote: “If you ever see me in a hospital bed, full of tubes and pipes and no good to anybody, tell them to switch me off.”
In fact, it took something under a fortnight in the hospice for him to die as a kind of collateral damage in the war between his cancer and the morphine. And in that time he stopped being him and started becoming a corpse, albeit one that moved ever so slightly from time to time.
There wasn’t much I could have done, and since the nurses in the Welsh hospice were fine big girls, perhaps that was just as well. I thank them now for the geriatric cat that was allowed to roam the wards and kept me and my mother company as we awaited the outcome. Feline though it was, and also slightly smelly, with a tendency to grumble, it was a touch of humanity in the long reaches of the night.
On the way back home after my father’s death I scraped my Jag along a stone wall in Hay-on-Wye. To be fair, it’s almost impossible not to scrape Jags along the walls in Hay-on-Wye even if your eyes aren’t clouded with tears, but what I didn’t know at the time, yet strongly suspect now, was that also playing a part in that little accident was my own disease, subtly making its presence felt. 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 midsentence,” and thus we are complicit in one another’s determination not to be mortal. We like to believe that if all of us are growing old, none of us are growing old.
I have touch-typed since I was thirteen, 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. My condition was simply wear and tear on the brain caused by the passage of time that “happens to everybody.” Old age, in short. I thought, well, I’ve never been fifty-nine before and so this must be how it is.
So off I went, reassured, about my business; I did a signing tour in Russia, a signing tour in the U.S.A., 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 recognize 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 Cam
bridge, 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 from it 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. It’s very Zen. First there is no teacup and then, because I know there is a teacup, the teacup will appear the next time I look. I have little work-arounds to deal with this sort of thing—people with PCA live in a world of work-arounds. A glass revolving door is a potential Waterloo; I have a work-around for that now, too. In short, if you did not know there was anything wrong with me, you would not know there is anything wrong with me. People who have spoken to me for half an hour or so ask me if I am sure I have the illness. Yes, it’s certainly there, but cunning and subterfuge get me through. So does money. 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 have 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.
My first call when I got back from Cambridge was to my GP. I wanted to know what was going to happen next. In fact, it became clear that nothing at all was going to happen next unless we made it happen; there was no specialist anywhere local to me prepared to take on an early onset patient with PCA, and therefore nobody who could legitimately write me a prescription for the only palliative Alzheimer’s drug on the market. When I learned this I was filled with a rage, a rage that is with me still, but by now tempered and harnessed to practical purposes. I felt alone. A cancer sufferer, just diagnosed, can at least have some map showing the way the future might, hopefully, go. And I don’t seek to minimize how dreadful that disease would be, but there would be appointments, there would be specialists, there would be tests. Hopefully, you would receive sympathy, and hopefully you would have hope.
But at that time the Alzheimer’s patient was more or less told to go home. Indeed, I have been contacted by patients who were in effect told just that, with not even the suggestion that they might talk to, for example, the Alzheimer’s Society. I will say in another aside, I’m not the sort of person who goes to groups, but much later, I was persuaded to go to a PCA meeting in London, hosted by Professor Rosser of the National Hospital for Neurology and Neurosurgery. I remember the smiles when I started talking about the symptoms and it was hugely refreshing to be among people who understood without having to be told. But I had seen the bicycle clips of fire; I would have thrown a brick through a pharmacy window late at night for the medication I needed, and come to think of it, that might have made a damn good photo opportunity, but friends and contacts of mine who cared about my liberty helped me deal with the situation in the way that people deal with such situations in stupid hidebound bureaucracies. We bent things, just a tiny little bit. It wasn’t as though I was stealing. I still had to pay for the damn drugs.
But then it was time to decide who I was going to tell, and for the reasons given earlier, I decided to tell everybody. After that, my life ceased to be my own. I have had so much mail that not all of it can be answered in my lifetime. And I cannot remember how many interviews I have given. They must run into three figures easily. We did the BAFTA Award–winning documentary, in which I demonstrated to the world the impossibility of my tying a tie (funnily enough, I can tie my shoelaces, presumably because I have known how to do that for longer). I have also been able to write two more books, which my PA insists I tell you were bestsellers, had a stone bridge built over the stream in my garden, have been kissed by Joanna Lumley, and after being, astonishingly, knighted, subsequently made, with the help of knowledgeable friends, a sword—doing it the hard way, by first digging the iron ore out of the ground and smelting it in the garden. Of course, I shall never be able to take it out on the street, because such is the decay of our society that not even Knights can carry their swords in public. But who could ask for anything more? Except for, maybe, another kiss from Joanna Lumley.
But most of all in the last couple of years I have been listening. As a journalist, I learned to listen. It is amazing how much people will tell you if you listen in the right way. Rob, my PA, says that I can listen like a vacuum cleaner. Always beware of somebody who is a really good listener.
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.”
I will digress slightly at this point to talk about the baggage that words carry. Let us start with suicide. As a pallid and nervous young journalist I got to know about suicide. Oh, didn’t I just. It was part of my regular tasks to sit in at the coroner’s court, where I learned all the manifold ways the disturbed human brain can devise to die. High bridges and trains were, I suspect, the most traumatic instruments for all concerned, especially those who had to deal with the aftermath. Newspapers were a little more kindly in those days, and we tended not to go into too much detail, but I had to listen to it. And I remember that coroners never used the word insanity. They preferred the more compassionate verdict that the subject had “taken his life while the balance of his mind was disturbed.” There was ambivalence to the phrase, a suggestion of the winds of fate and overwhelming circumstance. No need to go into the horrible details that the coroner’s officer, always a policeman, mentioned to me after the case. In fact, by now, I have reached the conclusion that a person may make a decision to die because the balance of their mind is level, realistic, pragmatic, stoic, and sharp. And that is why I dislike the term “assisted suicide” applied to the carefully thought out and weighed up process of having one’s life ended by gentle medical means.
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 facie 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’ll return again to my father’s request to me, that I was unable to fulfil. In the course of the past year or so I have talked amiably about the issues of assisted dying to people of all sorts, because they have broached the subject. A lot of them get nervy about the term “assisted death” and seriously nervous about “assisted suicide,” but when I mention my father’s mantra about (not wishing to go on living supported by) the pipes and tubes they brighten up and say, “Oh, yes, I don’t have any problem with that.” That was the problem reduced from a sterile title into the wishes of a real person in whom, perhaps, they could see themselves.
When I began to draft this speech, the so-called debate on assisted dying was like a snowball fight in
the dark. Now, it seems to be occupying so much space in the media that I wonder whether it is something in the air, an idea whose time is really coming. Very recently an impassioned outburst by Martin Amis in an interview he gave to the Sunday Times called for euthanasia booths on every street corner. I firmly believe it was there to trap the hard of irony, and I note that it has done so—he was, after all, a novelist talking about a new book. Did it get publicity? It surely did. Apart from being tasteless, the idea is impractical, especially if there happens to be a photo booth next door. But his anger and grief at the way elderly relatives, friends, and colleagues have died is clearly genuine and shared by a great many. The postwar generation has seen what’s happened to their elders and are determined that it should not happen to them.
Even more recently, the British Social Attitudes Survey found that 71 percent of religious people and 92 percent of nonreligious people were in favour of medically assisted dying for patients with incurable illnesses if they should request it.
Insofar as there are sides in this debate, they tend to polarize around the Dignity in Dying organization, who favour assisted death in special circumstances, and the Care Not Killing Alliance whose position, in a nutshell, appears to be that care will cope.
And once again I remember my father. He did not want to die a curious kind of living death. He wasn’t that kind of person. He wanted to say good-bye to me, and, knowing him, he would probably have finished with a joke of some sort. And if the nurses had put the relevant syringe in the cannula, I would have pressed it, and felt it was my duty. There would have been tears, of course there would: tears would be appropriate and unsuppressable.
But of course, this did not happen because I, my father, and the nurses were locked in the aspic of the law. But he actually had a good death in the arms of morphia and I envy him.
A Slip of the Keyboard Page 24