Pratchett has posterior cortical atrophy (PCA), a rare form of early
Alzheimer’s, which affects the back part of the brain responsible for
recognising visual symbols. Sometimes he cannot see the cup that is in front
of him. Clumsiness is another of the symptoms. When he tremblingly puts his
glass of juice down on a glass-topped table in his hotel suite, it makes a
crash, as if he misjudged the distance, but then glass-topped tables are
tricky. I might easily have done the same. You don’t know with Pratchett,
and often nor does he, how much to attribute to his disease and how much is
natural ageing. So far, the cognitive parts of his mind seem untouched.
“One of the first things to go was the touch-typing. Kind of a bugger , I
thought. Fortunately, technology has come to my aid.” He now speaks his
books to a computer through a voice-recognition programme, or dictates them
to his assistant, Rob Wilkins, who reads back the words at the end of the
day. The new novel,
Dodger, a virtuoso tale that shuttles between the
sewers and grand houses of Dickensian London, was “written” in nine months.
Is putting a book together more difficult now?
“Better! Easier!” he yelps. “If it all came back, I would probably stick with
talking. Because we’re monkeys. We chatter. It’s easy to do. It’s mutable.”
And the imaginative side? Pratchett’s teeming brain has spewed forth 50 books,
39 of them set in the alternative realm of Discworld. He has sold 80 million
and been translated into 38 languages. The fact that he was Britain’s
bestselling living author of fiction before JK Rowling came along perversely
adds to his achivement rather than diminishes it. Interwoven with historical
figures such as Charles Dickens, Robert Peel and Disraeli, Dodger is
convincing proof of his still galloping imagination. “Sometimes I wish I
could do something to slow it down. My wife says she can hear me plotting in
my sleep.
“I do not know if it’s all suddenly going to go blong. In terms of
fit-for-purpose, my life is OK. By the time I’ve unlocked the chapel – the
shed where I work – the computer is on and away I go. I probably know what
the first word will be. The pattern goes like this: tappity, tap, tap tap.
Do your work. Then go and feed the chickens. Then go and shoo the sheep out
of the garden. It’s good to get out into the sunshine, do a few other
things, then back to work and away you go.”
Pratchett and his wife, Lyn , who have been married for 44 years, live in what
he calls “a Domesday manorette” south-west of Salisbury. I would dearly like
to have seen his allegedly mouse-infested office with its six computer
screens, gothic lectern, dusty books and assortment of skulls, but for some
reason he is going to meet me “half way”. When I turn up at the Hilton
Metropole hotel in Birmingham, a disappointingly un-Pratchett- like
conference centre near the airport, there is something odd going on. A
character in a long black cloak and cavalier’s hat with ostrich feather is
hobnobbing with a group of over-made-up women. Another face-painted woman,
wearing a wisp of green gauze and not much else, drifts by, causing no
eyebrow to be raised. There is a peculiar hum about the place, as though a
pantomime is about to start.
And in a way it is. “Didn’t they tell you?” exclaims Pratchett’s assistant
Rob. Tell me what? That this is the opening day of the eighth Discworld
Convention, a celebration – with seminars, merchandise, games, dancing and
role-play – of the fantasy universe according to Pratchett, the pre-eminent
imaginer of dragons, creator of Rincewind the magician, of Nanny Ogg and
Granny Weatherwax, of the repulsive conman Moist von Lipwig. The fans’
weekend takeover is total. Areas of the usually staid hotel have been
renamed and mapped – Sator Square, Krull, Wyrmberg, Unseen University and
The Odium. It is a complicated place, requiring a Lonely Dysc guide and a
spotters’ crib-sheet to help Discworld novices identify guests by their
mannerisms and garb. It is completely, wondrously bonkers.
Serene in the middle of it all, with a plastic name-tag dangling around his
neck, is Sir Terry, worshipped for his stories and now especially for his
ability to keep them coming.
He sometimes sounds annoyed that his campaign to increase funding for dementia
research and for the right to die with dignity has diverted interest away
from his prodigious writing career. Does he ever regret making his
predicament public? “Never for one single iota of a moment. Saving your
presence, I do get annoyed when interviews are all about that, although I
know it’s my own fault. But it gave me almost a new lease of life.”
Since he “stepped out”, as he puts it, people have started coming up to him in
the street, in theatres, in cafés, to thank him. They tell him about their
terminally ill mother, husband, grandmother who suffered needless protracted
agonies and indignities. “They say, 'I’m not going to go the way my mother
went.’ ” In 2009, his two-hour BBC documentary Living with Alzheimer’s won
two Baftas and made him the public face of the disease. The following year,
he gave the Richard Dimbleby Lecture, Shaking Hands with Death, arguing that
a person in extremis should be able to make a decision to die when the
balance of their mind is “level, realistic, stoic, pragmatic and sharp”.
He is dismayed that Tony Nicklinson, the severely disabled man who fought and
last month lost an impassioned campaign to end his life, effectively had to
starve himself to death. “I put his picture on the little lectern by my desk
because I don’t want this guy forgotten. He was very clear about what he
wanted and you cannot tell me that two doctors helping him to go to sleep
[as in a Dignitas clinic in Switzerland], would constitute murder. It cannot
be murder. The law says it’s murder so the law is most definitely wrong and
needs to be changed. This poor guy was a prisoner of technology.”
Ideally, Pratchett wants to live his own life to the full and then, before the
disease mounts its final attack and before words fail him in the most
literal sense, to die in a chair on his lawn with Thomas Tallis on his iPod,
a brandy in his hand and whatever modern version of the ''Brompton
cocktail’’ a helpful medic can supply.
He has called the desperate little stream of travellers to Dignitas “the shame
of Britain” and harks back to the days when doctors were unafraid to “help
people over the step, and were expected to, without any words ever being
said by the family”. It has never seemed likely that Pratchett himself would
elect to die in a foreign country, but he is not inclined to share his
shifting thoughts on the subject. “I have no road map,” he says, perhaps
more to protect his wife than himself.
Will she support him in whatever he decides? “I believe this is going to be
the case,” he says opaquely. “But we discuss it in oblique terms. We share
the same temperament. She doesn’t like bullies – and in the opposition to
assisted dying there is a certain amount of bullying: 'Because I believe in
this God whom you do not, I insist that you are not allowed to die.’ ”
Does he have any sympathy with those whose religious beliefs set them against
assisted suicide? Pratchett veers off, as is his way. “Would it surprise you
if I say that often when I’m gardening I’m singing hymns?” And he launches
into a Sunday school favourite that must have been excised from Hymns
Ancient & Modern long ago:
“Over the world there are small brown babies/ Fathers and mothers and babies
dear/ They do not know the love of Jesus/ No one to tell them that he is
near…”
He has a certain affection for the Church of England, because it “understands
the English”, and he recently gave a lot of money to a small church near his
home “because I don’t think we should let good churches go.” But does he
believe in God?
“Do you?” he parries. “If Jesus suddenly walked in I would like to have a
really good conversation with him but I’m not going to take anyone’s word
for it beyond that. I don’t believe in the war god of the Israelites. He’s a
bogeyman. Jesus preached the golden rule, by and large.”
He recalls a strange moment in the second euthanasia documentary he made,
Terry Pratchett: Choosing to Die, about three men with degenerative
illnesses. One was Peter Smedley, who had motor neurone disease, filmed in
his dying moments at Dignitas. “When it was over, Erica, our statuesque
nurse, opened the window and said, 'I have no religion but I believe the
soul leaves the body within 36 hours of death.’ I was freaked out anyway and
I freaked out even further. I think that kind of ambiguity is being human.”
There is a sharp drollness about Pratchett, son of a motor mechanic, that
gives his books their edge and will spice the autobiography he is writing.
He has just finished the chapter On Being Rich. “There is a soak-the-rich
attitude in the air, a feeling that if you have a lot of money you must have
got it by some ghastly means. I can quite happily say there was never any
family money. All the money we got was mine, just from writing books.”
His pride is not misplaced. The Pratchetts were a happy but thrifty family
whose idea of a holiday was a week in Lyme Regis with friends. Terry was a
forensic sort of boy, fond of expeditioning and experiments. “My father
encouraged me to do all the Just William things. He was never so pleased as
when I electrocuted him by setting up a little device in his shed to give
him a shock when he opened the door.” Crystal sets, astronomy, science… if
the boy had a legitimate passion, his parents encouraged it.
He came to reading late, through a chance encounter with The Wind in the
Willows. It detonated a love of books “similar to Hiroshima” and his real
education began thereafter at the Beaconsfield public library, where he
“read like a mowing machine”.
He was a journalist in his native Buckinghamshire and then a press officer for
the Central Electricity Generating Board, writing science-fiction novels in
the evenings, before deciding to write full-time. For security, his mother
hoped he would get a proper job in an office again. Only when he bought his
parents a new house was she reassured that he must be doing all right.
I make a foolish comment to the effect that he is a very lucky man. In the
circumstances, he could have issued a devastating put-down but just gives
one of his glittering stares. “Yes,” he says. “And the harder I work, the
luckier I become.”
Money means that he will not have to worry about his wife after he is gone. It
means he can afford the Alzheimer’s drug Aricept, which he is too young to
receive free under the NHS. He has donated £500,000 to Alzheimer’s research.
He can experiment with strange treatments, such as the flashing helmet with
light rays that may rejuvenate his brain cells. And he hopes that when the
time comes he will be able to buy the right kind of care to die well.
“The word 'care’ has come to have the same aura to it as the term
'workhouse’,” he says. “Like most people, I would rather die at home. I’m
certainly going to be buried
at home. I have enough ground. And the nice thing is that it would be sacred
ground at last.”
Terry Pratchett’s new novel,
Dodger (Doubleday Children’s,
£18.99), is available to order from Telegraph Books at £16.99 + £1.35 p &
p. Call 0844 871 1515 or visit
books.telegraph.co.uk