*Terry Pratchett on Alzheimer's

Terry Pratchett is one of my favourite writers. Even though I'm not a fan of fantasy (beyond his books) I have read every one of his except for a couple of the kids' books. This is because the fact that they're fantasy is relevant only insofar as it makes the books more about our times. It is fantasy/scifi at its best: social commentary, satire, exploration of the human condition (even when the characters aren't human). He is witty, wise, and literate. I can't believe that he turns out a new book every year (and more) of this calibre. I am more impressed by some over others, but I read and enjoy them all.

Having been diagnosed with Alzheimer's Sir (deservedly imo) Terry Pratchett donated a million dollars for research because "it's amazing how people listen if you stand up in public and give away $1million for research into the disease." He has PCA, a variant of Alzheimer's that allows sufferers to remain fluent and coherent while robbing them of memory and visual perception. Here he is writing about his diagnosis with the same honesty, acuity and verve he brings to his books:

When in Paradise Lost Milton's Satan stood in the pit of hell and raged at heaven, he was merely a trifle miffed compared to how I felt that day. I felt totally alone, with the world receding from me in every direction and you could have used my anger to weld steel. Only my family and the fact I had fans in the medical profession, who gave me useful advice, got me through that moment. I feel very sorry for, and angry on behalf of, the people who don't have the easy ride I had…

I felt that all I had was a voice, and I should make it heard. It never occurred to me not to use it. I went on the net and told, well, everyone. I wish I could say it was an act of bravery. It wasn't and I find that suggestion very nearly obscene. How brave is it to say you have a disease that does not hint of a dissolute youth, riotous living or even terrible eating habits? Anyone can contract dementia; and every day and with a growing momentum, anybody does…

It is a strange life when you "come out". People get embarrassed, lower their voices, get lost for words. Fifty per cent of Britons think there is a stigma surrounding dementia but only 25% think there is still a stigma associated with cancer. It seems that when you have cancer you are a brave battler against the disease, but when you have Alzheimer's you are an old fart. That's how people see you. It makes you feel quite alone.

Full story here.

Filed under: Literature, Nature & Science Tagged: PCA, Terry Pratchett