Archive > Sir Terry Pratchett, OBE – (1948-2015)
Sir Terry Pratchett, the much-loved author of the satirical Discworld fantasy novels, has died at the age of 66. A prolific writer and collaborator (he wrote books with Neil Gaiman and Stephen Baxter, and worked with both electric folk band Steeleye Span and songwriter Dave Greenslade on Discworld related albums) the course of Sir Terry’s life changed after he experienced what was at first misdiagnosed as a stroke. In December 2007 Pratchett announced that he had in fact been confirmed as suffering posterior cortical atrophy, a form of early-onset Alzheimer’s.
With characteristic determination and cheerful stoicism, Sir Terry embarked on a practical exploration of the implications of what he referred to as his ’embuggerance’ whilst continuing his writing career with the help of human assistants and improved technology. By 2008 he acknowledged that he was now finding it too difficult to write dedications whilst signing books.
Pratchett could not avoid awareness that there is no cure for Alzheimer’s, and that this illness, so devastating for sufferers and carers alike, receives a tiny fraction of the research funding into other diseases. At the time, government funding for Alzheimer’s was a mere 3 per cent of that spent on cancer research. Sir Terry immediately made a substantial cash donation to the then Alzheimer’s Research Trust and embarked on a mission to raise the profile of the illness and improve funding, support and research.
Announcing his gift, Pratchett still seemed to hope that a medical breakthrough might rescue him from a disease that has had no recorded survivors. “I am, along with many others,” he said, “scrabbling to stay ahead long enough to be there when the Cure comes along. Say it will be soon – there’s nearly as many of us as there are cancer sufferers, and it looks as if the number of people with dementia will double within a generation.”
But Death, a satirical character in the Discworld novels, was something he could hardly avoid contemplating in life. The appalling degenerative condition with which he had been diagnosed meant facing the possibility of prolonged suffering without hope of exercising control over what remained of his life – and, importantly, its end.
By August 2009, Sir Terry was discussing euthanasia in written articles. He was subsequently invited by the BBC to write the 2010 Richard Dimbleby lecture Shaking Hands With Death – a plea for sensible debate and legal change which was read by his friend the actor Tony Robinson because of difficulties Pratchett now had with reading aloud. This was followed by the award-winning 2011 tv documentary Terry Pratchett: Choosing to Die which featured Peter Smedley, a 71-year-old motor neurone disease sufferer, committing suicide at the Swiss assisted dying organisation, Dignitas. This was inevitably controversial, but was vigorously defended by Terry Pratchett himself, and the campaigning group Dignity In Dying of which he had become a patron.
In 2014 Peter Owen published Assisted Dying, a cogent and moving collection of essays and personal testimonies edited by Lesley Close and Jo Cartwright. Published in conjunction with the organization Dignity in Dying, Terry Pratchett contributed a foreword.
By July 2014, Pratchett’s ’embuggerance’ had progressed to the extent that he felt forced to cancel his planned appearance at the biennial International Discworld Convention – the first time he had ever missed such an event in the UK.
Sir Terry Pratchett died at his home on 12 March 2015 from a severe chest infection with final complications from his Alzheimer’s. Funny, humane, cultured and wise, he had commented several times that he had wanted to hear Thomas Tallis’s transcendentally beautiful 40-part motet Spem In Alium as he died. Here it is. Goodbye Sir Terry Pratchett.
Written by James Nye on behalf of Peter Owen Publishers.
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