It’s while he’s telling a story about why he’s not frightened of death
that Sir Terry Pratchett, possibly even more famous today for his
Alzheimer’s than the millions of books he has sold, appears to come
mentally undone.
“How can you fear death when you don’t even know what it is?” he’s wondering, dressed all in wizardly black, seated on a plush red bench in the airy atrium of the May Fair Hotel, London. “You don’t even know
if there’s going to be a ‘you’ there, to see you there. I remember when I was around six I was taken to... not Wookey Hole... um... the Mendip... where are the caves… the name... Somerset... this is PCA for you...”
PCA (posterior cortical atrophy) is the rare form of early onset Alzheimer’s Pratchett was diagnosed with in 2007, aged 59. It affects memory to a degree but is, in fact, more disruptive to his visual processes. He can neither read nor physically write effectively any more – certainly “an embuggerance”, as he’s described it, for Britain’s biggest-selling author behind only JK Rowling. Pratchett is the author of more than 50 books, 39 of them his absurdist-science fiction Discworld phenomenon, published in 38 languages. Right now, though, intent on finishing his story, he asks our photographer, “Are you in a position to Google?”, which yields his answer, “Cheddar Caves!”, and concludes his tale about stumbling over, alone, an archaeological skeleton exhibit and not being afraid, “because I thought, you can’t do anything, you’re under that glass”. He returns to his original point.
“But what people fear is a bad death,” he decides. “They fear being halfway dead. In some clinic. Where they’re prodding and pushing you about.” Or they still fear they’ll languish in this unknown place called Hell. “Or, as we call it these days, ‘care’.” And he cackles, as he often does, with an infectious, glittery-eyed wheeze.
The most inspirational thing about Terry Pratchett today, now 64, the planet’s most passionate proponent of legally assisted dying, is that he’s far more interested in talking about life than he is about death, and in telling a funny story, determined to make you laugh.
“My short-term memory is not very good,” he’ll explain, contemplating his condition today. “On the other hand, my short-term memory is not very good... I was waiting for you to laugh!” You soon realise that it’s you, in fact, who’s considerably more preoccupied with the assumed deterioration of Pratchett’s mind than he is. Later, talking about how we both had parents on their hospital deathbeds who were, as he puts it, “mummified in morphine”, I mention how my mum, a life-long nurse, asked me to ask the nurses to up her morphine dose (she’d pointed to her digital dosage box and managed the words “It’s not enough”) and the nurses told me they could not “because of Harold Shipman”. Pratchett stared, I thought, blankly so I began reminding him about Harold Shipman. “Of course I know Harold Shipman!” he boomed. “And yes, he made it worse, absolutely. As did middle management types – ‘We don’t want to be sued’…”
This year, he was appalled by the fate of locked-in syndrome sufferer Tony Nicklinson, who starved himself to death after his right-to-die appeal was lost. “I went ballistic,” fumes Pratchett. “He was most emphatically compos mentis and had the love of his family. There is no way it could be murder.”
He remains, though, optimistic, still advocating the creation of “a reverse coroner’s court” where the terminally ill, their doctor and closest loved one can be heard and individually assessed “before whatever disease puts them in a bucket”, he notes. “And if the argument is that it’s bad for society because we don’t know what’s going on, let society see it.”
Pratchett himself has vividly shown us in his Bafta-winning documentaries both the daily reality of Alzheimer’s (Living with Alzheimer’s, 2009) and the procedures at Dignitas in Switzerland (Terry Pratchett: Choosing To Die, 2011), where we saw motor neurone disease sufferer Peter Smedley, 71, die in his seat, wife by his side.
“So we persevere,” he nods. “Everywhere assisted dying is practised, there’s been no case of anyone having it done against their will. Where people say ‘Granny will be pushed into the garbage system’, it simply has not happened. I’ve even phoned my way through to the FBI. Now, we have to get the Vatican off our backs. The God-botherers. And the shallow politicians that think ‘We might get kicked out if we change the law’. The bastards.”
In 2012, Pratchett’s imagination remains as robust as his personality – “My creative self seems to be alive and well; I’m still me”. Dodger, his latest novel for young adults, a lively tale of a sewer scavenger in Dickensian London, sees Pratchett’s gloriously vivid language undiminished even as he notates his words to voice-recognition technology.
He wrote the book partly because he loves the Victorian era – “It’s the most interesting one,” he chirps before an enormous anecdote ensues about 19th-century “corset wars” – and partly because The Youth need better teaching – “The young generation has no fucking idea about history!”
Pratchett remains a conversational riot, if impossible to interrupt: any attempt to interject into his infinite anecdotes is met with a highly mischievous “Shut up and let me finish my story!” Sometimes, when memory fails him, he’s sure it’s merely “being in my 60s”, as perhaps is his habit of recalling his colourful past: stories about his parents, who he adored (his mechanic dad was “stoic”, his formidably bright, book-encouraging mum could “see through rocks”), about being “a disruptive force” at school in High Wycombe, a cosmology-obsessed teenager forever bringing in Private Eye and Mad magazine “even though Harry (the headmaster) was determined to keep the ’60s out of High Wycombe”.
At 17, he eschewed university for newspaper journalism on the local Bucks Free Press, where his experiences were extreme: seeing a dead body on his first day – “Very, very dead, and I thought ‘Isn’t it amazing, you can go on being sick when you’ve run out of things to be sick with?’” – being pulled from a well full of pig-muck and witnessing body parts scattered along a railway line after a woman’s suicide – “She’d been standing by the track smoking fags and I counted the stubs. She smoked six and then stepped in front of the train”. It’s here, too, he first encountered notions of assisted dying, remembering the former nurse who told him she’d “twice killed somebody” back in the 1930s, ending the agony of a cancer patient, at the behest of his wife, through pillow suffocation, a nursing practice known as “showing them the door”.
No wonder he became both a pragmatic realist and professional absurdist, a one-man Monty Python of satirical science fiction and a humanist without religion. “I have no belief in the war God of the Israelites,” he announces today, though he hopes, with his scientific leanings, our energies might live for ever, “I think we all would like to think so”. Back in the ’70s, he and his wife of 44 years, Lyn, were “hippies, with jobs”, choosing to have one child (Rhianna, who’d become a successful computer games writer) as a contribution to population control (they were evidently ahead of their time). How does he feel, as a hippy, about his fortune?
“If there’s one thing that makes me happy about being a millionaire it is that all the money I’ve got, I earned, and nobody died,” he smiles. “Nobody was momentarily inconvenienced by the work I did. Widows and orphans had no problems from me. People kept saying ‘Can we have more books?’ and I said ‘Okay, here’s another one – kerching!’”
“How can you fear death when you don’t even know what it is?” he’s wondering, dressed all in wizardly black, seated on a plush red bench in the airy atrium of the May Fair Hotel, London. “You don’t even know
if there’s going to be a ‘you’ there, to see you there. I remember when I was around six I was taken to... not Wookey Hole... um... the Mendip... where are the caves… the name... Somerset... this is PCA for you...”
PCA (posterior cortical atrophy) is the rare form of early onset Alzheimer’s Pratchett was diagnosed with in 2007, aged 59. It affects memory to a degree but is, in fact, more disruptive to his visual processes. He can neither read nor physically write effectively any more – certainly “an embuggerance”, as he’s described it, for Britain’s biggest-selling author behind only JK Rowling. Pratchett is the author of more than 50 books, 39 of them his absurdist-science fiction Discworld phenomenon, published in 38 languages. Right now, though, intent on finishing his story, he asks our photographer, “Are you in a position to Google?”, which yields his answer, “Cheddar Caves!”, and concludes his tale about stumbling over, alone, an archaeological skeleton exhibit and not being afraid, “because I thought, you can’t do anything, you’re under that glass”. He returns to his original point.
“But what people fear is a bad death,” he decides. “They fear being halfway dead. In some clinic. Where they’re prodding and pushing you about.” Or they still fear they’ll languish in this unknown place called Hell. “Or, as we call it these days, ‘care’.” And he cackles, as he often does, with an infectious, glittery-eyed wheeze.
The most inspirational thing about Terry Pratchett today, now 64, the planet’s most passionate proponent of legally assisted dying, is that he’s far more interested in talking about life than he is about death, and in telling a funny story, determined to make you laugh.
“My short-term memory is not very good,” he’ll explain, contemplating his condition today. “On the other hand, my short-term memory is not very good... I was waiting for you to laugh!” You soon realise that it’s you, in fact, who’s considerably more preoccupied with the assumed deterioration of Pratchett’s mind than he is. Later, talking about how we both had parents on their hospital deathbeds who were, as he puts it, “mummified in morphine”, I mention how my mum, a life-long nurse, asked me to ask the nurses to up her morphine dose (she’d pointed to her digital dosage box and managed the words “It’s not enough”) and the nurses told me they could not “because of Harold Shipman”. Pratchett stared, I thought, blankly so I began reminding him about Harold Shipman. “Of course I know Harold Shipman!” he boomed. “And yes, he made it worse, absolutely. As did middle management types – ‘We don’t want to be sued’…”
This year, he was appalled by the fate of locked-in syndrome sufferer Tony Nicklinson, who starved himself to death after his right-to-die appeal was lost. “I went ballistic,” fumes Pratchett. “He was most emphatically compos mentis and had the love of his family. There is no way it could be murder.”
He remains, though, optimistic, still advocating the creation of “a reverse coroner’s court” where the terminally ill, their doctor and closest loved one can be heard and individually assessed “before whatever disease puts them in a bucket”, he notes. “And if the argument is that it’s bad for society because we don’t know what’s going on, let society see it.”
Pratchett himself has vividly shown us in his Bafta-winning documentaries both the daily reality of Alzheimer’s (Living with Alzheimer’s, 2009) and the procedures at Dignitas in Switzerland (Terry Pratchett: Choosing To Die, 2011), where we saw motor neurone disease sufferer Peter Smedley, 71, die in his seat, wife by his side.
“So we persevere,” he nods. “Everywhere assisted dying is practised, there’s been no case of anyone having it done against their will. Where people say ‘Granny will be pushed into the garbage system’, it simply has not happened. I’ve even phoned my way through to the FBI. Now, we have to get the Vatican off our backs. The God-botherers. And the shallow politicians that think ‘We might get kicked out if we change the law’. The bastards.”
In 2012, Pratchett’s imagination remains as robust as his personality – “My creative self seems to be alive and well; I’m still me”. Dodger, his latest novel for young adults, a lively tale of a sewer scavenger in Dickensian London, sees Pratchett’s gloriously vivid language undiminished even as he notates his words to voice-recognition technology.
He wrote the book partly because he loves the Victorian era – “It’s the most interesting one,” he chirps before an enormous anecdote ensues about 19th-century “corset wars” – and partly because The Youth need better teaching – “The young generation has no fucking idea about history!”
Pratchett remains a conversational riot, if impossible to interrupt: any attempt to interject into his infinite anecdotes is met with a highly mischievous “Shut up and let me finish my story!” Sometimes, when memory fails him, he’s sure it’s merely “being in my 60s”, as perhaps is his habit of recalling his colourful past: stories about his parents, who he adored (his mechanic dad was “stoic”, his formidably bright, book-encouraging mum could “see through rocks”), about being “a disruptive force” at school in High Wycombe, a cosmology-obsessed teenager forever bringing in Private Eye and Mad magazine “even though Harry (the headmaster) was determined to keep the ’60s out of High Wycombe”.
At 17, he eschewed university for newspaper journalism on the local Bucks Free Press, where his experiences were extreme: seeing a dead body on his first day – “Very, very dead, and I thought ‘Isn’t it amazing, you can go on being sick when you’ve run out of things to be sick with?’” – being pulled from a well full of pig-muck and witnessing body parts scattered along a railway line after a woman’s suicide – “She’d been standing by the track smoking fags and I counted the stubs. She smoked six and then stepped in front of the train”. It’s here, too, he first encountered notions of assisted dying, remembering the former nurse who told him she’d “twice killed somebody” back in the 1930s, ending the agony of a cancer patient, at the behest of his wife, through pillow suffocation, a nursing practice known as “showing them the door”.
No wonder he became both a pragmatic realist and professional absurdist, a one-man Monty Python of satirical science fiction and a humanist without religion. “I have no belief in the war God of the Israelites,” he announces today, though he hopes, with his scientific leanings, our energies might live for ever, “I think we all would like to think so”. Back in the ’70s, he and his wife of 44 years, Lyn, were “hippies, with jobs”, choosing to have one child (Rhianna, who’d become a successful computer games writer) as a contribution to population control (they were evidently ahead of their time). How does he feel, as a hippy, about his fortune?
“If there’s one thing that makes me happy about being a millionaire it is that all the money I’ve got, I earned, and nobody died,” he smiles. “Nobody was momentarily inconvenienced by the work I did. Widows and orphans had no problems from me. People kept saying ‘Can we have more books?’ and I said ‘Okay, here’s another one – kerching!’”
It’s mirth, clearly, that has always buoyed the Pratchett soul and he
literally cries with laughter today recalling the wooing of his wife
when he was a trainee journalist who owned a motorbike but no car.
Unable to afford both the Chinese meal and the taxi to pick her up in
for their first date, he colluded with a “sympathetic” cabbie to
rendezvous round the back of her home and then casually drive together
to the front. “So I dropped my motorcycle in the hedge, more or less,”
he cackles. “Off with the Bell Star jacket, on with the snazzy clothes,
run-run-run – oh, it’s coming back, it’s all coming back! – and got
there just as the car pulled up. So it looked as if I’d been driven the
whole way but only had to pay him from then on. And it worked!”
And he dabs, shoulders shaking, at his eyes. Today, his medical prognosis is good – “People with PCA can go on for quite a long time, I’ve been told” – so he’ll simply carry on writing his books and fronting (and funding) his increasingly urgent law-changing crusade, still wishing, as he so memorably detailed in his spellbinding Richard Dimbleby Lecture, Shaking Hands With Death (2010), to die seated in his garden, brandy in one hand, legal potion in the other, with 16th-century English choral composer Thomas Tallis on his iPod.
He is, surely, the least morbid spokesman for The Reaper alive today, a chortling champion of the
light in life before the darkness inevitably descends. The wizardly Sir Terry Pratchett, it turns out, can even make you laugh on your deathbed.
“Mr Smedley was laughing with me at the last minute,” he smiles. “I was telling him I take a lot of pills every day and these days pills don’t come in pill boxes, you have to really pull them out [of the container]. So you’re putting pressure on and pressure on and you get what I call the toilet ping, where it goes ckck, bong, ck, ck, ping, splash! And that was his last laugh. Before he died. He laughed.
He had a good death. Possibly one of the best.”
And he dabs, shoulders shaking, at his eyes. Today, his medical prognosis is good – “People with PCA can go on for quite a long time, I’ve been told” – so he’ll simply carry on writing his books and fronting (and funding) his increasingly urgent law-changing crusade, still wishing, as he so memorably detailed in his spellbinding Richard Dimbleby Lecture, Shaking Hands With Death (2010), to die seated in his garden, brandy in one hand, legal potion in the other, with 16th-century English choral composer Thomas Tallis on his iPod.
He is, surely, the least morbid spokesman for The Reaper alive today, a chortling champion of the
light in life before the darkness inevitably descends. The wizardly Sir Terry Pratchett, it turns out, can even make you laugh on your deathbed.
“Mr Smedley was laughing with me at the last minute,” he smiles. “I was telling him I take a lot of pills every day and these days pills don’t come in pill boxes, you have to really pull them out [of the container]. So you’re putting pressure on and pressure on and you get what I call the toilet ping, where it goes ckck, bong, ck, ck, ping, splash! And that was his last laugh. Before he died. He laughed.
He had a good death. Possibly one of the best.”
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