Author public face of dementia
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 earlyonset Alzheimer’s disease.
If anything he became more present on the public stage post-diagnosis than he had been as a bestselling comic fantasy fiction writer. After revealing in 2007 that he had PCA, which corrodes visual recognition, causes clumsiness 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.
“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.
His greatest contribution was undoubtedly to demythologize Alzheimer’s.