Sir Terry Pratchett has died aged sixty-six , eight years after being diagnosed with Alzheimer’s disease. He spoke to me on 18/04/11 in Melbourne where he was particularly interested in conveying his feelings and thoughts about his illness and the idea of his impending death. Here is the audio and below, a transcript of our conversation:
Ramona Koval: Today we welcome one of the most successful and popular writers on the planet: fantasy writer and satirist Sir Terry Pratchett. Terry Pratchett’s Discworld, a large disc resting on the back of four giant elephants, all supported by a giant turtle as it swims its way through space, arrived 28 years ago or so with the publication of The Colour of Magic, in 1983. Since then he’s written 38 novels in the Discworld series, as well as other fantasy and alternate reality books. All kinds of things happen in Discworld, peopled by fantasy figures of all sorts including rats who talk, inanimate objects who do the same, and energised by satire and an element called narratorium. The Discworld novels are brilliant parodies of many of the more absurd things which exist in our world and, through this world, he’s almost single-handedly defined the comic fantasy genre—spanning as they do genres of fantasy, sci-fi and humour.
His other worlds have turned Terry Pratchett into an international bestseller, as well as earning him an OBE for services to literature, many honorary doctorates and a knighthood. But in December 2007 Terry Pratchett released a statement that he’d been diagnosed with a rare form of early-onset Alzheimer’s disease. It’s called posterior cortical atrophy, or PCA. Since then he’s become patron of the Alzheimer’s Research trust and has done a great deal of work to raise the profile of the important fundraising required, as well as making donations himself.
But he’s continuing to write and to keep several different worlds on the go at once. He’s been in Australia to attend the 2011 Australian Discworld Convention, amongst other things. Sir Terry Pratchett, welcome again to The Book Show.
Terry Pratchett: Thank you. On a little point of order, it’s Narrativium, it sounds so much nicer, don’t you think?
Ramona Koval: Narrativium. That’s right. It is a typo, actually.
Terry Pratchett: And you left out police procedurals as well. You get everything in Discworld.
Ramona Koval: You do. Yes, narrativium, that was my typo.
Terry Pratchett: You would have narrativium in the narratorium. That’s where you would keep the narrativium, obviously that’s—the Latin is perfect.
Ramona Koval: Typos, though…was that one of the things that you noticed first when things started to go wrong in your head?
Terry Pratchett: There were other things. But you don’t notice them at the time, because you think…there’s always an excuse. It’s a bad day, and the windscreen was fogged, and all those other things. I found driving getting a little more difficult. I now know that that was because I was having to use more thought to do things, although I didn’t—this was happening automatically. I didn’t know… One of the things with PCA is the things that once upon a time you would not even know you were doing, like turning a doorknob, now becomes something that you have to determine to do. So for me, you’ll see me go to the doorknob and carefully…that’s a doorknob, we can deal with a doorknob—and away you go. And if you put me in a room with [laughs] like my hotel room, it’s got ornamental glass in some places, as a wall. That’s poison to me. I’ll walk into the glass.
Ramona Koval: Because the problem with the way that your disease starts, it’s in the back of the brain in the visual processing area.
Terry Pratchett: That’s right.
Ramona Koval: So it means that, what, things aren’t where you think they are.
Terry Pratchett: Often…I can see you, I can see him, I can see that, I can see this, I can see out there, I can see the tree out there—they’re all there. But if I put down my coffee cup I would have to…yes, if it was a coffee…depending on colour and things, I might not see it. Certainly at the moment it’s a small object mixed with other objects. I just might not notice it. I’m certain of course the first thing I did was trade in my driving licence, because actually at that point I don’t think I would have been a dangerous driver, but once you’ve got PCA theoretically you’re driving along, there is the little girl on the crossing, and your eye is seeing the little girl on the crossing but your brain isn’t registering—oh, little girl on crossing. And you just do not want to go there.
Ramona Koval: So…you’re writing, you’re typing, you’re reading. At the time, what do you notice as a writer doing the daily writerly things that are unusual for you?
Terry Pratchett: What now?
Ramona Koval: No, then.
Terry Pratchett: Then. Well, I was writing a novel and it was getting a bit harder…but again, there are always, always, always excuses. And anyone who gets diagnosed with Alzheimer’s, especially if it’s early onset, will tell you this. You think of everything else before you think of that. And indeed, the cruel part was that I was actually diagnosed as not having Alzheimer’s. And that is because PCA is in a different part of the skull. And the people that look at Alzheimer’s through the various machinery, tend to look where you expect to see what you might call ‘vanilla’ Alzheimer’s.
Ramona Koval: In different parts of the brain…
Terry Pratchett: And I walked away thinking, ‘Oh, that’s cool. Haven’t got Alzheimer’s,’ and I went off and I did a signing tour of Italy and a signing tour of Russia and a signing tour of America—in which I went in to the White House—and the only thing that ever seemed to have gone wrong was when I turned up to have dinner with our ambassador—where was it? Probably in Russia—with a button done up the wrong way. But I put that down to having got dressed in the morning, because I had to take an early flight to get there, and we all had a little laugh about it. But looking back, I can think of all the little tiny straws in the wind.
And when I got back I went to see my GP, and God bless her, for some reason she sent me to Addenbrooke’s Hospital in Cambridge where happening to work there at that time was a guy who specialised in PCA, and he put me through a whole battery of tests to make certain, but he actually said later, ‘When I heard you describe it, I was pretty sure.’
Ramona Koval: That that’s what it was.
Terry Pratchett: Yes.
Ramona Koval: So it’s a different sort of set of symptoms than other kinds of Alzheimer’s disease because clearly you…
Terry Pratchett: Well you get the memory loss as well.
Ramona Koval: Yes, eventually you get the memory loss as well but before…
Terry Pratchett: Oh, I get memory loss…
Ramona Koval: Already? You sound pretty good…
Terry Pratchett: I’m nearly 63, and indeed I don’t know how much of the things I find problematic are because I’m 63. I mean obviously there’s more, but you just cannot pick why things happen. But certainly the short-term memory is bad.
Ramona Koval: I have looked on YouTube and various other places and seen that you have given several lectures since you’ve been diagnosed, and sometimes you’ve given lectures with the use of friends like Tony Robinson the actor, or your assistant Rob Wilkins. Is this because reading is difficult for you?
Terry Pratchett: I can read a page of type. The real problem is when you come to turn the page. Whatever the function is that allows you to continuously read, so that in a sense the turning of the page is something that happens while you’re doing something else, I haven’t got that.
Ramona Koval: So for you, how does it…you can’t find the bit where you were up to…
Terry Pratchett: I can read the paper…well yes, that’s it, I have to go and find…so I’ll read my way through the bits I want in the newspaper, that’s not too bad. But reading for pleasure now is a little bit harder. Except in older books, because invariably the typeface is much, much better and clearer than modern ones. So my really old books I can still read, I’m very glad to say.
Ramona Koval: So for reading and writing, which is the bread and butter of a writer’s life, how have you adapted to the new state of your mind?
Terry Pratchett: With technology, actually. I use a text-to-speech…well not a program, it’s actually hardware as well on my computer. And it is pretty much the bees’ knees. It’s a combination of Dragon Dictate and then something called Talking Point on the top, which makes it rather more easy to use. And I find it pretty good. For most people it would be absolutely wonderful, but for an author, well you see an author uses everybody’s words. There’s no knowing what word the author is going to come up with, and there are so many made-up ones. And that’s not too difficult. They put my books in the computer overnight and it learned my usage.
Ramona Koval: So narrativium, for example.
Terry Pratchett: Yes, yes. It knows what narrativium is. And if it doesn’t know what a word is…
Ramona Koval: It doesn’t change it to ‘Norwegian’ or anything.
Terry Pratchett: Oh well it might do that if you’re a bit sluggish. You have those little moments but you can cure them, and if it’s—first of all of course, because this was an American invention originally, it doesn’t have any dirty words in it. Now I’m not going to use any dirty words in this program, but shall we say there’s a certain expletive that you might want to say occasionally, it won’t say that until you teach it, which means you have to type the word in so it knows what that word is, and then you have to say the expletive out loud a couple of times, and make certain that it now knows that the two things go together. I have some fun doing that.
Ramona Koval: So you’re teaching the computer.
Terry Pratchett: Yes, and it also, for example in my children’s series I have the Nac Mac Feegles, and they speak a kind of Scottish [demonstrates]. It can learn that, and people say, ‘How can it learn it, because they’re not really words.’ And I say, ‘Yes, but they’re all sounds.’ It learns that those sounds come out as [demonstrates]. And we get along on that. And when it comes to everyday letter writing and the general straightforward stuff—really no problem unless I’m getting really sluggish.
Ramona Koval: So because you can read what has just been dictated, you can get to the point where you know where the story is up to. I was thinking that you might have it all in your head, but of course you’ve got universes in your head. You’ve had universes in your head all your writing life.
Terry Pratchett: Well actually the creative bits seem to have been entirely untouched. If anything, they’ve been slightly accelerated.
Ramona Koval: How?
Terry Pratchett: I don’t know how it works. Don’t ask me. No-one knows. I think the smart guys up at Addenbrooke’s might know, but I don’t.
Ramona Koval: I saw an interview of you saying something like—and I don’t know whether this was just not quite exactly what you saw, but you were talking about seeing fire around somebody. A ring of fire or something.
Terry Pratchett: Oh, no, no. You do develop a certain kind of mind as a writer, and especially a fantasy writer and especially as a fantasy writer of the kind that I am. Doctors don’t really know what to do about Alzheimer’s patients, because there’s nothing you can do, really. Well there’s about one product that does help a little bit. But certainly there is no cure. And even now, even after me standing up and talking about it at great length, I still hear from people who were told, ‘You’ve got Alzheimer’s, sorry about it, can’t do anything.’ And you’re standing there and the doctor’s going to go to see to the next patient, and what do you do? Whereas if you’re told you’ve got cancer, these days that’s not always the death sentence it once was. People get better from some cancers. You have hope. With Alzheimer’s, no. And I thought that was a fairly terrible thing.
Ramona Koval: So that was a metaphor for this ring of fire…
Terry Pratchett: No. what really happened is I went…when I had been diagnosed by the doctor, he took some time to tell me—he said later because I didn’t…I met him much later on and he said, ‘I just didn’t want to tell a famous author that he was going to have to stop writing.’ And actually it turned out I haven’t had to stop writing. And when he said, ‘You’ve got a form of Alzheimer’s,’ I saw him outlined in red fire.
Ramona Koval: Did you really see him…
Terry Pratchett: Yes. Outlined in red fire. And we’d been in there for some time, and as we were leaving, one of his colleagues—and this was Cambridge, so you have to understand, it’s a university town—one of his colleagues was just preparing to leave the place and he’d put on his cycle clips, because he had his bike inside the building. And as he did, I saw them outlined in fire. The bicycle clips of fire. I used it, and it got a laugh. And in a sense… my father had an endless sense of humour. Not the joke-telling sense of humour but the seeing of humour in the most unlikely of situations. And I am fortunate to have been bequeathed that. Regrettably I’ve also got his bladder and hair loss.
Ramona Koval: But this idea, the ring of fire, it sounds almost like a kind of biblical vision of the pronouncement of doom, doesn’t it, don’t you think? It could come out of the Old Testament, a ring of fire. I’m just thinking about how the mind works, and why a ring of fire? You must have felt shocked by it, and there your mind has thrown up some kind of…
Terry Pratchett: I was more angry than shocked. And that’s where the fire came from. I was angry because it’s early onset. You’re not supposed to be getting it then. Some poor guy I think once had it in his 30s. Crikey! You just get…when you call it biblical, you’ll happily blow up heaven after a revelation like that.
Ramona Koval: Terry…I can call you Terry, can’t I?
Terry Pratchett: Of course…
Ramona Koval: We don’t have to call you Sir all the time.
Terry Pratchett: Good heavens, you’re an Australian, you’re not supposed to do that sort of stuff.
Ramona Koval: That’s right. That just occurred to me. You decided basically to fight it, although you know that it’s inevitable.
Terry Pratchett: You know you’re going to lose.
Ramona Koval: But you’ve spoken about it, you’re talking about the need for money for it, you’ve been involved with a two-part documentary series on the BBC, all about your disease and what you’ve done to try and find some sort of alleviation. And in the second part of that series you visit an Alzheimer’s ward to see—because you were told, actually, that this form of Alzheimer’s will actually progress to full-blown Alzheimer’s like other people’s diseases have.
Why did you go to see that American place?
Terry Pratchett: Because it would be the truth, and I am a journalist above other things, and I believe in the truth. And that was it. Rob, I think, found it really tough.
Ramona Koval: Rob’s your assistant.
Terry Pratchett: Yes. He came along and thought, hmm. But that was because I favour assisted dying. I see the little expression change in you.
Ramona Koval: No, no, not at all. I favour assisted dying too.
Terry Pratchett: Yes, so what are you doing about it?
Ramona Koval: Well, I’m thinking about it.
Terry Pratchett: Well, you don’t have to do it at the moment.
Ramona Koval: No, that’s good.
Terry Pratchett: It just seemed to me—I’ve done a lot of things. When I was knighted I made my own sword from scratch, which included digging out and smelting the iron ore.
Ramona Koval: Because why? Because it was going to be fun to do?
Terry Pratchett: Because then it would be truly my sword. And it has meteoric iron in, and as everybody knows, meteoric iron—I’ve got quite a lot of it—is obviously magical. And indeed when I made it I think some of the iron entered my soul, because I’m very combatative on various issues.
Ramona Koval: Like assisted dying.
Terry Pratchett: Assisted dying, yes.
Ramona Koval: So this is because you think that you don’t want to end up in that Alzheimer’s hospital like the one you saw?
Terry Pratchett: That didn’t look bad.
Ramona Koval: Because you said it was quite nice…
Terry Pratchett: Yes. On the other hand—and no offence to the place—some doors you don’t open out of respect to the inmates. And you don’t know what it is you’re not seeing. It isn’t as if the camera crew arrived one day without any notice and started filming. So the journalist in me has to be suspicious, because you don’t know that you’re seeing all the truth. Although many of the things I noticed, and many of the techniques they had seemed to me to be those of people who had worked out how to deal with things. Like there was the lady who was very confused and, well…but every day she tried to go to the bank, because that’s what she used to do. So they set up in their foyer a little sort of counter. And every day she would dress in her best clothes, which she was quite capable of doing, and she went to the bank and did her banking business and she came back and for the rest of the day that was it. And they did seem to me to be good at giving the patients something to do which in their own head was something that was quite well worth doing. And frankly that describes the human experience to a T.
Ramona Koval: So what’s the difference between her going to the bank in the ward and going to the bank outside in terms of banking…nothing really.
Terry Pratchett: Well, in her head, nothing at all. But we must understand that she is in fact not going to the bank. But her internal reality…it seemed to me that they were taking care that the internal reality of the patients was not distressing them. But as we know, care overall is something of a lottery. I mean consider the dreadful algebra of necessity. My wife thinks that she could look after me, but looking after an Alzheimer’s patient is quite difficult, and she’s the same age as me.
Ramona Koval: And you have, in that documentary, although your wife and daughter decided not to take part in it, but there was a young woman who you spoke to whose father had Alzheimer’s and who said—who was obviously upset but she said, ‘Look sometimes, when things get worse I feel that at least this will mean that it’s not so long till the end.’
Terry Pratchett: Well, Alzheimer’s doesn’t kill you, you see. That’s the trouble. Because here’s the dreadful algebra: I would be quite accepting of care if I knew my wife was around to supervise. But care is a bit of a lottery. And then what happens, because since my wife is getting older too, what happens if something happens to her? My daughter travels the world and I don’t see why Alzheimer’s should, as it were, spoil her world either. So who would care for me, that I could trust? And so that’s why I look towards assisted dying. And fortunately, I’m one of the people who can look forward to it.
Ramona Koval: And fortunately because why? How come you are? Just because you can look on the internet and work out what to do?
Terry Pratchett: No, because at the moment people can go to Switzerland where it’s done nicely and carefully by people who know what they’re doing.
Ramona Koval: So you can afford to do that.
Terry Pratchett: Well, you have to be able to fly to Switzerland, apart from anything else. I mean that’s where an awful lot of people go, and I cannot see why there should be an objection, if a person—never mind about Alzheimer’s, but if a person has a very, very bad incurable disease like Motor Neurone—if they want to, that they should not be allowed to die quite carefully, peacefully, in the hands of a physician. As once they probably would have done in Victorian times.
Ramona Koval: Yes, tell me about what happened in Victorian times, because in your lecture you said the Victorians knew how to die. And that doctors thought it was part of their duty to help the stricken patient along the way.
Terry Pratchett: Actually it has…never mind about the Hippocratic oath, because there were about 36, at least, Hippocratic oaths, and these days I don’t think any young doctors ever take them anyway. Doctors have always seen it—my father for example, he died of pancreatic cancer, but mostly he died of morphine. A doctor said to me once, ‘If you were true about the actual cause of death for a great many patients, it would be morphine.’ But we know why the morphine was there, and so that’s not called murder because we know that we are—it’s the double-think that doctors have to have. We know that the patient might die as collateral of giving him a lot of morphine…
Ramona Koval: For pain?
Terry Pratchett: But on the other hand we are doing it to get rid of the pain. And in one sense I think I understand that. But you must, because you’re a clever man, because you have been a doctor, realise that yes, you are actually killing the patient. But you have this little kind of handkerchief that you can wave to say, ‘yes, but that was because he was in pain.’
Ramona Koval: So what happened along the way, between us and the Victorians?
Terry Pratchett: I don’t know. I think now…I think because the Victorians saw death far more often. If you were born early in Victoria’s rein, you’ll probably see several, if you’re a poor family, a lot of siblings die. And there wasn’t as much medication around for everybody, and such as there was, was not always very good. For quite a large part of that time arsenic was considered a very good cure for some conditions. Well, ultimately it is for all of them [laughs]. I have an arsenic collection at home, which is just arsenical ores, you know, as they come out of the ground. I just think they’re interesting things.
Ramona Koval: They’re not very good to suck, though.
Terry Pratchett: No, no. People say, ‘Are you allowed to have that?’ I say, ‘It’s the stones out of the ground.’ Yes, you are allowed to…you can pick up a stone and it’s your stone! And we’ve got used to being bullied, especially since 9/11. We’re bullied by everybody, and anyone even in a fluorescent jacket can bully you now. But in the Victorian…Victorians were resigned to the fact, they knew that they were going to die because they saw death all around them. Everyone had a funeral suit. There were a whole—you are a young lady, but can you remember when people used to…
Ramona Koval: I’m a grandmother.
Terry Pratchett: Yes, but I’m a sweet old gentleman I wouldn’t want to say that. Can you remember the days of the black arm band?
Ramona Koval: Yes, when people used to…and they used to have that around letters when someone had died.
Terry Pratchett: Yes, and it more or less died out when we were young. So they knew about the inevitability of death, and so they in a sense cast their plans. And when you see these nice little paintings of granddad dying with the whole family, the grandchildren…you can bet your boots that a kindly physician is behind the scenes. When I was a young man I met an ex-nurse who in the 1920s (she was very, very old when I met her) told me that she had killed two people. Both out of pity because they had cancer, and this was a rural area and there was no medicine and you know, she did what she said she had to do. She was very young and she went to see the older nurse in the area who said, ‘Don’t worry dear, we call that showing them the way.’ One gets the impression if you talk to the right people that there’s always been this undercurrent of it—the don’t let people suffer.
Ramona Koval: So the question of course, and we should just remark that Death in your fantasy world is actually a very kind being.
Terry Pratchett: Well, you see you have to think of it like this, as Death says, ‘I don’t kill people.’ You know, the spear kills people, the fall kills people, the poison kills people.
Ramona Koval: Life kills people.
Terry Pratchett: Yes. I just turn up. In fact it’s life that’s the most terrifying thing. But these days we are obsessed with life, of looking younger, you know you hear idiot things like children born now will never die. And the first thing you think: my word, that’s very optimistic, isn’t it? Who’s going to really say that? People aren’t prepared for death, although I found in my father, for example, as he neared death, a total understanding of it. He wasn’t exactly looking forward to it but I think his attitude was, well it’s been a good innings and I’d like to see what happens next.
Ramona Koval: Yes. So the question then is, at what point would you go to Switzerland? How do you think of yourself…would you be happy to be that lady, or a gentleman in a home pretending to go to the bank, or waiting for a bus that never comes?
Terry Pratchett: Well actually, how do I not know now that I’m a person pretending to be interrogated by you?
Ramona Koval: Oh, interrogated, is it?
Terry Pratchett: Well, it was quite a good word, I thought. I’d rather not. Because I think I’ve had a good life. I’d like it to be a bit longer. In Oregon, where they have assisted dying, if you have a sufficiently bad illness, one that cannot be cured, and if the doctors agree, you are given the poison. And you can take it home and take it when you wish, provided you don’t do it out of doors—which I thought was rather nice.
Ramona Koval: Why can’t you do it out of doors?
Terry Pratchett: Well, you don’t want to get the place untidy, do you, or do it where the kids can see you or anything like that? But the interesting thing is there seems to be some evidence that because the people that do this, because they know that they can stop it at any time, they face the pain. And I think we can understand that. You get up, it’s pretty bad, but it’s a good day and the grandchildren are coming. So I’ll die another day. And that seems to me a magnificent human thing to do, to face death, and at least for a few moments on the earth to defeat death. For a day. And then there will be one day, I think…well, there will be one day when it’s the last day. I think there was one guy who was given one or two years to live and the last I heard he was still alive—he’d got 30 hours of life, because he’d somehow to spite that little bottle he had gone on living. And I thought, that’s almost a medicine.
But that’s Oregon, and regrettably our governments, yours and mine, are against assisted death but don’t really tell anyone why, except that ‘God doesn’t like it,’ which I don’t know about you, I don’t think is enough in these rather Godless days to carry the case.
Ramona Koval: Do you think…there must come a time when you can’t write anymore because you can’t remember the worlds that you invented?
Terry Pratchett: Yes. Are you waiting for me to burst into tears? If you had a cameraman, he would… Yes, I understand that.
Ramona Koval: So when do you think you will decide not to write anymore?
Terry Pratchett: Not today. And tomorrow…probably not tomorrow. And then one day I suppose, if no other alternative arises, I’ll have to look in the Swiss telephone book. And it’s a shame that this has to happen.
Ramona Koval: And your family understand, are behind you?
Terry Pratchett: My wife is—because I think I’ve got quite a lot of time yet, and there is some suggestion that I have…my teachers never said this, but I have quite a large brain, and it seems to be rewiring to a certain amount. But I can’t see what other options there are. Because it’s nice to think that you can look after a spouse. But I had to remind her of her own mortality, and how sticky it could get for both of us. So no, she’s not all for it, but she understands the position. Just as I do. I don’t particularly want to die, and I’m absolutely fed up with the fact that I had this wretched disease in my 50s.
Ramona Koval: It’s not fair.
Terry Pratchett: It seems not fair. On the other hand, I know fantasy writers, like Douglas Adams, he died in his 50s. Dave Gemmell, he died in his 50s. I’ve had rather more time than they had. So can’t go complaining all that much.
Ramona Koval: Well, Sir Terry Pratchett’s lecture is on tonight in Melbourne at Storey Hall at RMIT. But it’s sold out, I hear. But you’ll be appearing in Sydney at the Opera House on Sunday, this Sunday at 5 o’clock. Terry Pratchett’s latest book is I Shall Wear Midnight. It’s a Discworld novel for young readers and it’s published by Doubleday. Terry Pratchett, thank you so much for being on The Book Show today.
Terry Pratchett: Thank you.