Pratchett faced death with vast bravery
Author’s wit and warmth should serve as inspiration to others
We are, on the whole, shy of looking death in the eye, shyer still of dying in public. And that is particularly true of famous names who develop Alzheimer’s.
They tend just to disappear from the public spotlight. Interview requests are politely declined, and a few years later an obituary appears. A veil is drawn over their declining years, as if it would destroy their previous reputation if the truth were to be known.
But not Terry Pratchett, who has died aged 66 of posterior cortical atrophy ( PCA), a form of early- onset Alzheimer’s disease.
If anything he became more present on the public stage postdiagnosis than he had been as a bestselling comic fantasy fiction writer. After revealing in 2007 that he had PCA, which corrodes visual recognition, causes clumsi- ness and attacks short- term memory, he put on a very good show of relishing his new role as the public face of Alzheimer’s.
“It’s extraordinary, the number of people who come up to me,” he said in 2012. “Never for one single iota of a moment” did he regret going so public on his Alzheimer’s.
Death, a likable parody of the Grim Reaper, is a popular character in his Discworld novels. For the last almost eight years of his life, Pratchett turned his attention to rewriting the standard version of all our deaths.
His 2010 BBC Richard Dimbleby Lecture — largely delivered by his friend Tony Robinson — was titled Shaking Hands With Death. The humour that was a trademark of his books was also present in his approach to Alzheimer’s. He called it — in a typical Pratchetty phrase — an “embuggerance.”
When he walked onto a stage, his routine would begin: “Hello, my name’s … ummm …” Laughing at Alzheimer’s was a new experience for most in the audience. And he told The Daily Telegraph’s Elizabeth Grice, in 2012, when she asked how he was, “I thought I’d be a lot worse than this by now — and so did my specialist”.
“Keeping things cheerful,” was his prescription. There was, for Pratchett, none of Dylan Thomas’s rage against the dying of the light. Instead he campaigned for all he was worth to make sure his own death would change things for those who went after him.
In November 2008, he visited the British prime minister to demand increased funding for dementia research. At the time it was three per cent of that spent on finding a cure for cancer.
He led from the front, giving the research fund almost $ 950 million. And he supported the sort of technology to help those with Alzheimer’s that might have fitted better in his books. For a while, he sported, instead of his customary wide- brimmed hat, a flashing helmet with light rays in the hope of rejuvenating his brain cells.
But his greatest contribution was undoubtedly to demythologize Alzheimer’s. In two Baftawinning films, he was filmed struggling to knot his tie, putting his trademark black leather jacket on upside down, and coping as PCA cast ever longer shadows over the pages in front of his eyes.
He also made an outspoken contribution to the debate around assisted suicide — or, as he described it, assisted death, saying the word suicide carried all sorts of negative associations. Another film followed in 2011, winning a Scottish Bafta.
He had little time for Christians who oppose the right- to- die legislation on religious grounds. He accused them, in effect, of saying, “because I believe in this God whom you do not, I insist that you are not allowed to die.”
One privilege of dying in public is he could be as blunt as he wanted. So, he labelled those who travelled to Switzerland to the Dignitas Clinic, “the shame of Britain.”
On his desk he kept a photograph of Tony Nicklinson, the severely disabled man with locked- in syndrome who lost a legal campaign to end his life, and died in 2012 after starving himself to death.
“I put his picture ( there) because I don’t want this guy forgotten. He was very clear about what he wanted and you cannot tell me that two doctors helping him to go to sleep would constitute murder. It cannot be murder.”
Appearing on Desert Island Discs in 1997, long before his diagnosis, Terry Pratchett said, “I don’t think I write literature. I think I write books that entertain.”
He suggested his name would not be remembered 50 years after he had died.
It will now. Whatever judgment is finally passed on the merits of his Discworld books, Pratchett’s extraordinary resilience and courage in facing up to Alzheimer’s will live on in the memory of many as an inspiration.