Not only an author of hundreds of popular science fiction books, but, in the last years of his life, a vibrant and charismatic figure in his own war on a very rare form of dementia.
Terry Pratchett died in March 2015, leaving behind a legacy of fiction spanning 30 years and including 87 million books in nearly 40 different languages. He was a consumate writer, with an incredible imagination and a great sense of humour. When he was diagnosed with a rare form of dementia in 2007, his last years were to become both a quest to keep writing and a mission to raise awareness of his disease.
Diagnosed with posterior cortical atrophy (PCA), a rare form of Alzheimer’s which affects vision more than memory – and can include difficulty reading, recognising objects and judging distances, as well as problems with spelling and calculation – he campaigned for the last eight years of his life to push dementia and discussions about it into the public forum – “If we are to kill the demon, first we must say its name,” he said.
One year after Pratchett was diagnosed he spoke at an Alzheimer’s Research UK annual conference. There he candidly and beautifully recalled his experiences of dementia, before publicly donating $1 million to the charity. “So let’s shout something loud enough to hear. We need you and you need money. I’m giving you a million dollars. Spend it wisely.” At around the same time he met with the prime minister Gordon Brown to ask for more funding into dementia research, and worked with the BBC to make a two-part documentary series about his illness, Terry Pratchett: Living With Alzheimer’s, which was broadcast a year later. “I felt that all I had was a voice and I should make it heard. It never occurred to me not to use it.” The following year he was knighted for services to literature, and in 2010, despite the challenges of writing with PCA, he published his 40th novel, ‘Raising Steam’.
He died at home in 2015, a few months after finishing his last novel ‘The Shepherd’s Crown’, and his assistant Rob Wilkins wrote the following on his website, echoing the character of Death from Pratchett’s books:
“AT LAST SIR TERRY WE MUST WALK TOGETHER.
Terry took Death’s arm and followed him through the doors and on to the black desert under the endless night.
The End.”
Find out more about Terry Pratchett here.
