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.”
His assistant Rob, who comes across on the film as his closest friend, says
that Pratchett was always a difficult man, although an inspiring one. My
impression is that his sense of humour mostly stops him saying the truly
wounding things that he first thinks of. Nevertheless, I am glad that when I
arrive at his home in Wiltshire, it is Rob who greets me and replies to my
“How is he today?” with “He has a terrible cold”. It prepares me not to be
shocked by his boss's shocking lack of mental decline.
Rob walks me from the drive, past his observatory, to his office, a
mouse-plagued outhouse, an alternative Tardis in which a bank of six
computer screens sits on his desk, while in another corner an ancient tomb
perches open on a gothic lectern. Books - historical and scientific titles,
guides to myth, the Flashman novels - line the walls, each containing ideas
that have been warped into 47 novels (not all chronicle Discworld), which
have sold nearly 60 million copies.
Between sneezing and calling Rob for more tissues, Pratchett talks eruditely
and fluently for 90 minutes. As a former journalist - his progression was
from local papers in Buckinghamshire to the Central Electricity Generating
Board press office to full-time bestseller - he knows interviewers' tricks.
When I ask about his regrets, he says: “You are doing what journalists do.
You're prodding to look for the lever. Well not the lever, the place where
the lever could go.” That would open up his soul, I presume he means.
The only thing he forgets is my name (why should he remember it?). Yet when
people tell him that there seems nothing wrong with him, he counters that
that is not what the brain scans show. PCA affects the back part of the
brain responsible for recognising visual signals. His typing has become
dyslexic. It takes him minutes to tie a tie. An early symptom, Rob
remembers, was fumbling with his keys, unable to see the one plainly in
front of him. At a reading at a Discworld convention, the words began to
swim and he stopped. But talking is no problem. And will never be? “No,
eventually, as I understand it, with a few little question marks here and
there, all streams lead to the same sea.”
His PCA was diagnosed at Addenbrooke's Hospital, Cambridge. As for all
Alzheimer's patients, there was no “shining path”, no next step for
treatment, no specialist to discuss medication with. He contacted the
Alzheimer's Research Trust, which directed him to a doctor in Bath who had
PCA patients. Later, at a PCA support group, he spoke of his “Clapham
Junction days”, when things are too much, and everyone knew exactly what he
meant. “You're treading on your own feet all the time.”
Rob sat next to him when he received the news. They talked about it non-stop
all the way back before Rob left him to tell his wife, Lyn, a
no-longer-practising artist to whom he has been married for 40 years (they
have a grown-up daughter). She was relieved it was not a brain tumour. For
Pratchett, it was, at least, an interesting condition and he set about
making himself expert in it. His mind reacted interestingly too. One day he
imagined that he had been spoken to by someone who wasn't there.
“It wasn't God, but I think it came out of the place where gods come from. I
was walking in the garden. You have to be a fantasy reader almost to
understand the language I'm speaking, but I had the memory of hearing a
voice that I hadn't heard. Nothing audio had taken place. It was if someone
had said something five minutes ago and I was remembering what they'd said.
And it was my dad saying, ‘You know it's all going the way it should. Just
don't worry'.” I thought his main reaction had been anger? He has to correct
me again. “This wasn't anger. This was rage. You can smoulder with anger. I
could weld with this rage. Actually, that's quite good, I should write that
down.” Did he take it out on his wife? “No! That's the whole point, you save
it up. No, we get on very well. In fact, we were pretty close and if
anything now we're closer.”
He wrote somewhere that his last book, Nation, a brilliant parable about
reinventing civilisation after a tsunami, had been written with “filtered
rage”. “Look, I'll own up, OK? Authors are good at this sort of thing. I've
got some rage here. It is bloody good rage. It's like an artist finding a
bloody good blue pigment, what can I paint with it? So this book is about a
boy raging at the gods.” Nation would appeal even to readers left cold by
the flippancy of Discworld. I suggest that it might make the Booker
short-list. He barks with laughter. “It won't. I can't believe it would be.
I just cannot.” Yet it is not genre fiction? “But it is written by a genre
fiction author. We know, don't we, that if Margaret Atwood writes science
fiction, it's not science fiction and if Brian Aldiss writes science
fiction, it is science fiction? It can't possibly be literature. Although I
would say he was one of the most literate of authors we have had.” So
Attwood gets the prizes and he and Aldiss get the readers? “If that is how
it works I think it's in my favour. But the thing is, I put even more poison
in the sherbet by writing for children as often as I write for adults.” Yet
Philip Pullman writes for children and is considered the genre's
intellectual. “Good, good,” he says, as if that label would be the kiss of
death. “My books have jolly covers and I'm a humorous fantasy writer, or
that's how I started and what I believe I still am. “
As it turns out, my needling of Pratchett about his status soon looks pretty
redundant. There is the knighthood, and then the announcement that the
National Theatre is to dramatise Nation, which puts him on a level with
Pullman, whose His Dark Materials became a play there. Harry Potter is
another matter.
“Because I watch sales, I was aware that Harry Potter was a phenomenon in the
children's market long before journalists had spotted it. And then I
remember reading an article that said, ‘Isn't it amazing that miniature
dragons can be pets?' And I thought, ‘Actually, they're fairly common'. I
have to be very, very careful, very, very careful here. That is no objection
at all to J.K.Rowling using them. She uses elves and unicorns and wizards.
So do I. So does anyone. It's like objecting to someone writing a crime
novel using policemen.
Rowling's boarding school for wizards was a good idea, I say, but Discworld
had its Unseen University for years. “I think you are manoeuvring me into
territory.” Look, I just want to know if he likes them. “I read the first
one and I thought I'd just find out how this goes, and then I thought it
would probably be a good idea for me to be able to say that I hadn't read
them. I've had letters from Potter fans, less so these days, mostly from
America, accusing me of plagiarism.” When one newspaper “fabricated” a row
between the two authors - in fact they have met and get on - he received
death threats from American Potterites. “E-mails,” he says, “ and very
stupid.”
He takes the Alzheimer's death threat more seriously. He can afford to try
even the crankiest-looking treatments. He has had his mercury fillings
removed, for instance, and each day he places on his head a flashing helmet,
hoping that its inventor, a Durham GP, may be right that its light rays will
rejuvenate his brain cells. Pratchett takes the chicken soup approach: they
won't do any harm. On the TV programme, he talks to a specialist who
believes a cure may be only five years away. “You know how it is, if there's
one thing worse than knowing there's no cure, it's knowing the cure will
come six months after you're dead. That would make you so angry, wouldn't
it? Except you wouldn't be there to be angry. The curious thing is that I
look inside myself and find no fear whatsoever. Regrets are different, but
at least I would leave my family well provided for so that's sorted.” What
regrets then? “Well, who would not regret leaving people? That's not the
same as fear.”
The photographer asks how he he's feeling. “Coldy,” he says coolly. Pratchett
poses in the trademark black he adopted for book tours so he did not have to
think what socks to wear with which trousers. A far away look comes into his
eyes. I had asked about regrets. He regrets, he says, that he will not live
long enough to dress in beige the way old people do, all zipped up for their
wander round the supermarket. That's vintage Pratchett, the jokes not just
getting the better of him, but being the best of him. Inside he may rage.
Outwardly, he beiges against the dying of the light.
Terry Pratchett: Living With Alzheimer's is part of the BBC's two-year mental
health project Headroom; 08000 933193. Part one is at 9pm, February 4 on BBC
2.
