Sir Terry Pratchett: "Shut up and let me finish my story!"
National treasure Sir Terry Pratchett on how he is fighting the dying of the light
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.”