For more than 40 years, Terry Pratchett has used science fiction and fantasy to craft subtle satires. But the onset of Alzheimer’s has forced him to confront a stark question – what will happen when he is no longer able to write?
I’m sitting in a café on Salisbury high street and a frail old man in a big black hat has just told me that he is going to die. “No medicine can prevent it,” says Sir Terry Pratchett, 64, national treasure, author of 54 books and counting, campaigner for assisted dying and professional morbid bastard. “Knowing that you are going to die is, I suspect, the beginning of wisdom,” he explains.
This is a story about death. Not Death with a capital “D”, that bony guy with the scythe and the sparkling blue eyes who shows up in nearly every one of Pratchett’s 30-plus novels in the Discworld series, swearing and smiling ineffably and being kind to cats. This is a story about death with a small “d” – the inconvenient little fact, the “embuggerance” that has been an implicit feature of Pratchett’s life and work since the author was diagnosed with posterior cortical atrophy, a rare form of early-onset Alzheimer’s, in 2007.
Pratchett’s writing career spans 45 years. He is Britain’s second-best-read author, having sold more than 80 million books worldwide. His Discworld series began as a pure comic fantasy with The Colour of Magic in 1983. It is the story of a lacklustre wizard tearing haplessly arounda flat world that travels through space on the back of a giant turtle. The books that followed have proved to be something more complicated, something deeper. A terse and bitingly moral satirical voice developed over the series. Most science-fiction and fantasy authors who become successful must confront their own politics sooner or later, because inventing a universe from scratch and inviting millions of readers to join you there demands a certain moral responsibility. Writers from Ursula K Le Guin and Robert Heinlein to China Miéville have used the fantastic as an explicitly political space, imagining other worlds where humanity might organise itself differently.
Pratchett went in precisely the opposite direction. He began to write like a man who knows that the most fascinating place in the known and imagined universe is this one, right here. Pratchett uses nerdy fantasy and slapstick comedy as tools to tell stories about racism and religious hatred, war and the nature of bigotry, love and sin and sex and death, always death, knotted into the ersatz adventures of talking dogs, zombie revolutionaries, crime-fighting werewolves, tooth fairies, crocodile gods and funny little men who sell suspicious sausages on street corners.
The stranger his books become, the more they look and sound like Britain in the late 20th and early 21st centuries: girls meet boys meet gender-bending dwarves; decent people are destroyed by their own cowardice; priests tell lies and blood-sucking lawyers run everything, although in the Discworld they truly are vampires.
“Terry is just really good at human beings,” says the author Neil Gaiman, a collaborator and close friend of Pratchett’s. The two co-wrote the 1990 bestseller Good Omens. “He’s good at genuine human emotions, in the tradition of English humour writing.
“You can point to classic P G Wodehouse, you can point to Alan Coren – these people who define the style of English humorous writing – and Terry is a master of it. He also understands all of the tropes of various different genres and can deploy them. When Terry began, people pointed to Douglas Adams, because he also wrote stuff set on different worlds, but Wodehouse is the closest person out there – although Terry’s range is wider.”
Like many friends of Pratchett’s, Gaiman finds it difficult to discuss his illness, so much so, that he agrees to speak about it only over Skype, email being too cold and stark. “I love the fact that Terry fucking embraced his Alzheimer’s,” Gaiman says. “I love that he took it and used it to raise the profile of the ‘dignity in dying’ campaign.”
Alzheimer’s is always cruel, but the form of the disease with which Pratchett has been diagnosed has a peculiarly savage irony. He has lost the ability to use a keyboard altogether and can do very little with a pen. His most recent four books have been written entirely by dictation, and with the help of his assistant of 12 years, Rob Wilkins.
“I can no longer type, so I use TalkingPoint and Dragon Dictate,” Pratchett says, as Rob drives us to the café in a rather unexpected large gold Jaguar. “It’s a speech-to-text program,” he explains, “and there’s an add-on for talking which some guys came up with.”
So, how does that differ from using his hands to write?
“Actually, it’s much, much better,” he says. I hesitate, and he senses scepticism.
“Think about it! We are monkeys,” says Pratchett. “We talk. We like talking. We are not born to go . . .” He turns and makes click-clack motions, like somebody’s fusty grandfather disapproving of the internet. Indeed, Pratchett is as passionate about technology as any fantasy writer should be. Decades ago, when the internet first opened up to non-specialists, com - munities such as alt.fan.pratchett quickly eveloped for readers of his books to share stories and meet each other. “You have to have a bit of nerd in you to get used to it, of course,” he says. He sizes me up suspiciously. “If you’re not a nerd I don’t want to speak to you. You must at least have taken the lid off your computer at some point?”
I don’t dare say no, because I suspect if I admitted that I work on a Mac and am worried about voiding the warranty, the interview really would be over. “Anyway, the algorithms are amazing,” he says. “I gave them everything I’d ever written that was electronic, and overnight it stewed it all up and worked out how the words would, should, sound.”
“We’ve got workarounds,” Rob says. “We’ve built the system so once the alarm goes off [in the morning] the computer switches on, so Terry doesn’t need to find the switch to turn on the computer.”
The great dictator
Pratchett’s assistant juggles the smartphone and pulls in to the café where we’re due to have our meeting. You can’t really understand Terry Pratchett without understanding Rob Wilkins, whose name I keep accidentally writing down as Willikins, a loyal butler-character with hidden depths who turns up in many of the Discworld books.
Rob is, in many ways, the archetypal Terry Pratchett fan. He’s big-hearted, fizzing with all the nerdy energy of a first-generation immigrant to the digital universe, crammed into a badly fitting black T-shirt, and utterly devoted. If there is a reason why Pratchett’s debilitating illness has had so little effect on his output to date, Rob is it. He’s the one who turns up at the house at any time of day or night to take dictation or fix a problem, and Terry’s wife has resigned herself to the fact that this is part of the job.
“If we create a workaround, that’s great, because we’ve got something to beat the disease,” he says, hurrying off to order the drinks. Both of them use the plural “we” to describe their work; the author’s Twitter feed is @terryandrob. Together, they are like boyhood friends, chatting about Alzheimer’s as if it were a particularly difficult video-game level they are determined to conquer. “We’ll soon have a system where Terry will be able to turn the lights on, open the curtains and all of those things just by talking,” says Rob. “It’s good fun. It means that we’re beating the disease every day.” He nods. “We like doing that.”
Where Pratchett is gruff and practical, Rob is expansive, the sort of man who gives a reporter he’s just met a great big hug when he recognises a fellow fan. In Choosing to Die, the Bafta award winning BBC documentary about the work of the Dignitas clinic in Switzerland that Pratchett presented last year, the writer is terse and solemn as he watches two men with terminal illness end their lives by choice. Rob is the one who rages about how unfair it all is.
Since his diagnosis, Pratchett has become a campaigner for the cause of dignity in dying. He spends all the energy he can on giving talks and making programmes to raise awareness of the condition. “We have a problem now that people think they are not going to die,” he says. “Previous generations understood about death, and undoubtedly would have seen a reasonable amount of death. Once you get into the Victorian era, you might well have seen the funerals of many of your siblings before you were very old.
“When people go to funerals these days, they don’t really know what to do. They don’t go to church anyway – that’s because they’re sensible – but they don’t know what to sing or when to go up or where to stand.”
Rituals are important in Pratchett’s world. He isn’t the sort of writer who was ever going to refuse a knighthood when offered it, but he did arrange to have a sword of his own forged using a lump of meteorite metal, reasoning that if one is to be a knight one should do the thing properly.
Country boy
Terry Pratchett grew up in Buckinghamshire and Somerset in the 1950s, an only child. Songs and stories were part of that rural upbringing from the outset – stories about aliens and space travel alongside traditional tales of the dubious doings of maidens fair and their mates.
“I got into science fiction by being interested in astronomy first,” he says. “My mum used to tell me lots of stories as she took me to school – she’d take me all the way to school, which would be about a mile and a half, and then she’d go to work.
“I was a kid from the council houses. The house I was born into was one which anyone on the dole would not set foot in because when you’re poorer in a rural area you’re really poor. My dad got the occasional rabbit here or there, mushrooms and stuff, and because he was a good mechanic he could keep a car down.
“They didn’t know they were incredibly good parents and I didn’t realise they were incredibly good parents until I grew up. Parents that stick kids in front of the television by themselves should be shot in the head.” He reserves the elderly curmudgeon’s privilege of wishing a good death on everyone, and an early one on anyone who disagrees with him.
When he began writing novels, more than 40 years ago, he and his wife, Lyn, were “hippies, but hippies with jobs”, he says. “I had a beard that Darwin would have got lost in, but I worked as a sub-editor on a paper, and we just had about enough room in our small cottage to have one child. Rhianna’s an only child, which is probably a good thing. You either go under when you’re an only child or you become a fighter. Rhianna is a fighter.”
Rhianna Pratchett is already a respected games writer in her own right. It was recently revealed that she is the creative mind behind the new Lara Croft franchise reboot, and she will be a co-writer on the BBC Discworld series The Watch, news of which has had fans like me chewing their cheeks in excitement. Mine may never recover after hearing some particularly exciting casting details that I’m absolutely not allowed to tell you about.
Run by Pratchett’s new production company, Narrativia, The Watch will continue the wellloved City Watch saga where the books left off, and Rhianna will be an important member of the writing team. The author tells me that he will be happy for her to continue writing the Discworld books when he is no longer able to do so. “The Discworld is safe in my daughter’s hands,” Pratchett assures me.
Rhianna has grown up immersed in her father’s universe and knows it inside out. Listening to him talking about his daughter, I realise it is the first time I’ve heard him acknowledge the possibility of not being able to write any more.
“The biggest thing about Terry for me, the thing that I’ve always found fascinating, is how much he loves writing,” Neil Gaiman says. “Not every writer does –we go from one end of the scale to the other. With Douglas Adams, novels had to be squeezed out of him like the last bit of toothpaste out of a tube, but then you have people like Terry; he would rather write than anything. As long as I’ve known him, since I met him when he worked [at the Central Electricity Generating Board] as a publicist, he would get home every night and write his 400 words.”
Right now the books are still coming out, rapidly but erratically – as if there’s wrapping up to be done. Stories that were waiting to be told are emerging haphazardly. Last summer, Pratchett published The Long Earth, a hard-sci-fi epic about alternative universes and resource allocation set in the near future; this winter it’s Dodger, a historical-fantastical story of Victorian London starring Charles Dickens, Henry Mayhew and a fistful of stock Dickensian characters brought stinkily to life. Though they are marketed to teenage readers, the stories have grown increasingly bleak, with resource wars, human cruelty and rivers of shit floating with corpses.
“What do you tell kids?” Pratchett asks, while we are still in the café. “ ‘Prepare for a short life,’ ” he says, before taking a sip of his tea. “We are going to end up fighting each other for resources. And waste most of those resources fighting with one another.
“I was in Indonesia a little while ago, and you can see the palm oil plantations. We went up in a helicopter, and they go from horizon to horizon. And once the palm oil has been taken away what you’ve got left is desert. And I mean desert – desert which is stone. We’re not going to get out of this one alive.”
It is at this point that he breaks into song. I don’t mean this figuratively. I mean that he calmly and decisively starts singing the old English folk tune “The Larks They Sang Melodious”. He has a good voice, a quavering baritone that has lost none of its strength, and he doesn’t give a damn that half of the café has turned to look.
Pratchett sings two whole verses. The song is full of firelight and longing and nostalgia for warmer, younger days, and if you half-close your eyes you could be sitting around a country fire, listening to some elderly relative tell you stories about love and death that are no less true for being ever so slightly made up. Except that that’s not where we are – we’re in a branch of Starbucks, drinking slightly stale tea, and “The Larks They Sang Melodious” was not written to be sung over piped-in Brazilian jazz.
“When you’re all singing together, it brings things together,” he says. “I know the songs that my grandfather and my father sang. Rhianna knows the songs that I sang, ’cause these days just about any songs that have ever been written are available somewhere.”
He is a raving fan of traditional music, and tells me with pride that he once “got a kiss from Maddy Prior. No, no, I won’t get in trouble if you write that down. Have you ever heard of Thomas Tallis?” he asks. Without waiting for an answer, he says: “Well, I was walking through the kitchen one day recently and we’d got the radio on, and ‘Spem in alium’ was on, and I went down on my knees. I wouldn’t give you tuppence to go to church, but I really did.”
I don’t mention that the reason everybody now knows about Tallis’s harmonies and 40- part canticle is that they feature in the bonkbuster Fifty Shades of Grey.
“Of course, that song I just sang, it’s all about sex, really,” he says, grinning.
Is this the end?
Sex and death and nature red in tooth and claw. Humour black as a fantasy writer’s hat. Dumping uncomfortable human truths on the table and sprinkling them with a little bit of fairy dust. That is what has been in Pratchett’s work from the start, steeping the nasty stuff in music and magic to make it bearable without ever lying to the kids, not for an instant. The campaign for assisted dying just takes that sentiment to its logical, practical conclusion.
“Let’s start with Harold Shipman,” he says, and that’s when I know Pratchett is trolling me. Because I’m not the first to notice that, with his bristly white beard and sharp features, the fantasy author bears an uncanny resemblance to . . . Harold Shipman, aka “Dr Death”, the GP who hanged himself in 2004 after he was exposed as a man who had murdered countless patients in their beds.
“What [Shipman] did was terrible . . . it knocked all the moxy out of all the doctors. It means that these days everyone has to fight like hell to keep some poor bugger alive even though he’s struggling. The difference is that Shipman was killing people that weren’t ill!” Talking about death with a man who is, in all likelihood, significantly closer to it than you are is terrifically uncomfortable, especially when you start getting into the particulars of the disease that will, one way or another, end his life. But Pratchett’s gruff matter-of-factitude makes the whole thing much easier, like a plaster being ripped off all at once.
I start to ask, “Have the doctors told you – I mean —” He intercepts before I can work through the knot in my tongue. “Have they told me when I’m going to die?” he finishes. Suddenly I suspect that in recent months he has often had to finish difficult sentences for relatives and reporters.
No, he hasn’t had the date yet. “If you didn’t know I had anything like this, you wouldn’t know,” he says quietly. That’s not quite true: Pratchett is whip-sharp, and talking to him makes you want to sit up straight and make sure your shoelaces are tied, yet he is noticeably frailer than his 64 years might lead you to expect, and occasionally he drifts off at the end of a sentence.
In fact, just before this interview went to press, Rob contacted me to say that Pratchett had almost died of what they had thought was a heart attack, in early November, while in New York on a book signing tour. The pair were on the way back to their hotel from a visit to Ground Zero, Rob says, when Pratchett “took a very bad turn. We were sitting in the back of a taxi when I noticed his breathing had become laboured.” A few minutes later, Pratchett passed out.
In a written account of the incident, which he plans to publish, he claims not to remember much, other than feeling “simply dreadful, and very cold, although sweat was pouring down my face, and I couldn’t even focus and just seemed to be slipping away. Rob kept asking me if I was OK and telling me we didn’t have far to go . . . I have to take his word for what happened next.”
What happened next is that Pratchett collapsed. “I had to kneel on the back seat of the taxi and give him CPR,” Rob says. “It was fingers down throat stuff. He nearly died.”
The author was rushed to hospital, but recovered swiftly. Doctors told him that he had suffered an atrial fibrillation, caused by the cumulative effect of drugs he had been prescribed for high blood pressure and made worse by his busy touring schedule. He now downplays the incident. “I once heard it mentioned that signing tours can kill you quicker than drugs, booze and fast women,” he tells the New Statesman. “Some of which I haven’t tried.” It’s made him wonder if he should slow down and devote more time to writing and his family, but he enjoys life on the road too much to give it up.
Earlier, when we met, I had asked Pratchett how his health affected his outlook on life.
“Mostly, I’m incredibly angry. Anger is wonderful. It keeps you going. I’m angry about bankers. About the government. They’re fecking useless.” He really does say “fecking”. “I know what Granny Weatherwax [a no-nonsense witch who crops up in several Discworld novels] would say to David Cameron. She’d push him to one side and say, ‘I can’t be having with you.’ [His sort] don’t do anything but suck up to the lawyers. Why isn’t someone hanged?”
There is a starkness here that runs throughout the Discworld books. Isn’t he worried that he might be scaring the kids with all this discussion of death? Not at all – in fact, if there’s one thing that distinguishes Pratchett’s contributions to the young adult section of bookshops, it is his willingness to bring young people face to face with some of the more gruesome facts of human existence, with the silly seriousnessness you would expect of a dying comedy writer who’d had a personal coat of arms made up with a Latin motto that features in his own books. The motto is “Noli timere messorem” – don’t fear the reaper.
His latest children’s book, I Shall Wear Midnight, features a set piece in which the young heroine has to prevent the suicide of a man who has recently beaten his unmarried, pregnant, 13-year-old daughter so badly that she has miscarried – and bury the foetus. Harry Potter it ain’t. Yet the kids gobble it up, because one thing that Pratchett understands is that just because kids like stories doesn’t mean they like to be lied to.
So, the possibility of young readers seeing their favourite author on television talking frankly about his own death worries him not a whit. “Scaring the kids is a fine and noble thing to do,” he says. “I’m happy to tell kids to prepare for a short life. But it works like this – you can take them through the dark forest, but you must bring them out into the light.”
Laurie Penny joins the New Statesman this week as a contributing editor.
Read Helen Lewis on the politics of Pratchett, and the New Statesman leader "Facing Death (and Binky)" about the significance and afterlife of his work.
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