Death Worth Dying For
The Sunday Times published this edited extract from Terry Pratchett's 2010 Richard Dimbleby Lecture in which the author speaks honestly and with great humour about his Alzheimer's disease.
A great supporter of 'dying with dignity' Terry achieved his goal of passing away peacefully in his own home and, I like to think, a smile on his face.
Ah, Death. Do come in, dear fellow
The novelist Sir Terry Pratchett died last week. In a moving speech delivered after he developed Alzheimer’s he describes preparing to shake hands with the Grim Reaper
By Terry Pratchett - The Sunday Times
Terry Pratchett at his home in Salisbury (Adrian Sherratt)
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 The 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 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.
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. We like to believe that if all of us are growing old, none of us [is] growing old.
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. 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 59 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 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 diplomatically pointed out that I had made a fist of buttoning up my shirt. Well, I had got up early for the flight and dressed in the dark, and so we all had a little chuckle, followed by lunch, and I hoped everyone but me forgot about it.
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 The 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 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.
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. We like to believe that if all of us are growing old, none of us [is] growing old.
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. 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 59 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 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 diplomatically pointed out that I had made a fist of buttoning up my shirt. Well, I had got up early for the flight and dressed in the dark, and so we all had a little chuckle, followed by lunch, and I hoped everyone but me forgot about it.
Terry Pratchett with his daughter Rhianna in 1998
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 [PCA], 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. 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 workarounds to deal with this sort of thing — people with PCA live in a world of workarounds. A glass revolving door is a potential Waterloo; I also have a workaround for that now, too. In short, if you did not know there was anything wrong with me, you would not know there was 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 gets me through. So does money.
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 definitely be 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 learnt 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 minimise 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.
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 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.
We made a 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.
After learning of my illness, I vowed that rather than let Alzheimer’s take me, I would take it.
I would live my life as ever to the full, and die, before the disease mounted its last attack, in my own home, in a chair on the lawn, with a brandy in my hand to wash down whatever modern version of the “Brompton cocktail” — a potent mixture of painkillers and brandy — some helpful medic could supply. And with Thomas Tallis on my iPod, I would shake hands with Death.
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.
These days, non-traumatic death — not the best word, but you will know what I mean, which is to say, deaths that don’t, for example, involve several cars, a tanker and a patch of ice on the M4 — largely takes place in hospitals and hospices. Not so long ago it took place in your own bed. The Victorians knew how to die. They saw a lot of death. And Victorian and Edwardian London were awash with what we would call recreational drugs, which were seen as a boon and a blessing to all. Departing on schedule with the help of a friendly doctor was quite usual, and there is every reason to believe that the medical profession considered that part of its duty — part of its duty was to help the stricken patient on their way. Does that still apply? It would seem so.
It’s that much-heralded thing, the quality of life that is important. How you live your life, what you get out of it, what you put into it and what you leave behind after it.
We should aim for a good and rich life well lived, and at the end of it, in the comfort of our own home, in the company of those who love us, have a death worth dying for.
This is an edited extract from Terry Pratchett’s 2010 Richard Dimbleby Lecture
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 [PCA], 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. 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 workarounds to deal with this sort of thing — people with PCA live in a world of workarounds. A glass revolving door is a potential Waterloo; I also have a workaround for that now, too. In short, if you did not know there was anything wrong with me, you would not know there was 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 gets me through. So does money.
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 definitely be 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 learnt 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 minimise 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.
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 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.
We made a 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.
After learning of my illness, I vowed that rather than let Alzheimer’s take me, I would take it.
I would live my life as ever to the full, and die, before the disease mounted its last attack, in my own home, in a chair on the lawn, with a brandy in my hand to wash down whatever modern version of the “Brompton cocktail” — a potent mixture of painkillers and brandy — some helpful medic could supply. And with Thomas Tallis on my iPod, I would shake hands with Death.
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.
These days, non-traumatic death — not the best word, but you will know what I mean, which is to say, deaths that don’t, for example, involve several cars, a tanker and a patch of ice on the M4 — largely takes place in hospitals and hospices. Not so long ago it took place in your own bed. The Victorians knew how to die. They saw a lot of death. And Victorian and Edwardian London were awash with what we would call recreational drugs, which were seen as a boon and a blessing to all. Departing on schedule with the help of a friendly doctor was quite usual, and there is every reason to believe that the medical profession considered that part of its duty — part of its duty was to help the stricken patient on their way. Does that still apply? It would seem so.
It’s that much-heralded thing, the quality of life that is important. How you live your life, what you get out of it, what you put into it and what you leave behind after it.
We should aim for a good and rich life well lived, and at the end of it, in the comfort of our own home, in the company of those who love us, have a death worth dying for.
This is an edited extract from Terry Pratchett’s 2010 Richard Dimbleby Lecture
