Pharmaceuticals Anonymous

Friday, February 6, 2009

Terry Pratchett: On His Alzheimer's

UPDATE: Aug. 9 2009
Pratchett is fighting for the right to die.
Not so fast, Sir Terence: Alzheimer's may not be what your medical experts tell you it is. See
Harold Foster.

From The Times
January 30, 2009
Discworld author Terry Pratchett on Alzheimer's and his best work
The Discworld author is funny, fluent and channelling the anger towards his Alzheimer's disease into some of his best work

Andrew Billen

The Talmud decrees that to save one life is to save the world. If scientific research can save Sir Terry Pratchett from Alzheimer's disease, then it will also save Discworld, the fantastical other Earth that the novelist has chronicled in 36 books. Discworld is a flattish disc that rests on four elephants standing on an enormous turtle - but you probably know that, even if you have never read Pratchett. The idea is such a delightful joke, both on creation myths and the more pompous strains of fantasy fiction, that it resonates. As a young fan interviewed on a two-part BBC documentary that follows Pratchett's first year from diagnosis, says: “How could a great mind like that be lost?” I try the thought out on Pratchett, that for intellectuals, such as Bernard Levin or Iris Murdoch, the disease is particularly cruel. “Yes, isn't that a pile of c***?” he replies. “It is a tragedy for everybody. Or, if it is a tragedy for anyone, then it is tragedy for everyone.”

You need to be careful when talking to Pratchett on this matter. For a start he has a particular strain of Alzheimer's called Posterior Cortical Atrophy (PCA) and its symptoms are different. Second, he does not think it makes him special. Over the new year, Edward Stourton on the Today programme on Radio 4 made the mistake of linking his knighthood with the news of his illness, released on the web 13 months ago, a few months before his 60th birthday. Pratchett retorted that he hoped he was being recognised for more than getting ill. He let Stourton off when he said he was referring to the way he had addressed the condition. Stourton was lucky. I get into trouble for saying that having a film crew accompany him as he investigated his own prognosis must have been a “sacrifice”.

“You see, there you go again. It seemed to me absolutely natural because I had to tell people and I thought, ‘Well why be bashful about it?' It's not as if I'd done something wrong. In too many people's minds Alzheimer's is considered madness. It is a physical disease that affects the brain.” In fact, he will admit that the campaigning - not just the television but a visit to Downing Street, where Gordon Brown personally made him a cup of tea and, what is more, listened, a pledge to give a million dollars in research, appearances at support groups and so on - has cost him “half a book”. This is a sacrifice, for he must keep writing.

“Otherwise I'm just Terry Pratchett, ‘the sufferer'. It's all part of our modern culture. We like people to be sufferers because then we can pity them.” He doesn't then want a movie made of his “battle”, such as that Iris Murdoch film? “No. I think three different researchers wrote to me asking could I help them with work on analysing my style as the illness progresses, and I wrote back, 'What I like about vultures is that they wait until the donkey is dead'. I just couldn't believe that they would try that.”

About his television program on living with Alzheimer's