It’s while he’s telling a story about why he’s not frightened of death
that Sir Terry Pratchett, possibly even more famous today for his
Alzheimer’s than the millions of books he has sold, appears to come
mentally undone.
“How can you fear death when you don’t even know what it is?” he’s
wondering, dressed all in wizardly black, seated on a plush red bench in
the airy atrium of the May Fair Hotel, London. “You don’t even know
if there’s going to be a ‘you’ there, to see you there. I remember when I
was around six I was taken to... not Wookey Hole... um... the Mendip...
where are the caves… the name... Somerset... this is PCA for you...”
PCA (posterior cortical atrophy) is the rare form of early onset
Alzheimer’s Pratchett was diagnosed with in 2007, aged 59. It affects
memory to a degree but is, in fact, more disruptive to his visual
processes. He can neither read nor physically write effectively any more
– certainly “an embuggerance”, as he’s described it, for Britain’s
biggest-selling author behind only JK Rowling. Pratchett is the author
of more than 50 books, 39 of them his absurdist-science fiction
Discworld phenomenon, published in 38 languages. Right now, though,
intent on finishing his story, he asks our photographer, “Are you in a
position to Google?”, which yields his answer, “Cheddar Caves!”, and
concludes his tale about stumbling over, alone, an archaeological
skeleton exhibit and not being afraid, “because I thought, you can’t do
anything, you’re under that glass”. He returns to his original point.
“But what people fear is a bad death,” he decides. “They fear being
halfway dead. In some clinic. Where they’re prodding and pushing you
about.” Or they still fear they’ll languish in this unknown place called
Hell. “Or, as we call it these days, ‘care’.” And he cackles, as he
often does, with an infectious, glittery-eyed wheeze.
The most inspirational thing about Terry Pratchett today, now 64, the
planet’s most passionate proponent of legally assisted dying, is that
he’s far more interested in talking about life than he is about death,
and in telling a funny story, determined to make you laugh.
“My short-term memory is not very good,” he’ll explain, contemplating
his condition today. “On the other hand, my short-term memory is not
very good... I was waiting for you to laugh!” You soon realise that it’s
you, in fact, who’s considerably more preoccupied with the assumed
deterioration of Pratchett’s mind than he is. Later, talking about how
we both had parents on their hospital deathbeds who were, as he puts it,
“mummified in morphine”, I mention how my mum, a life-long nurse, asked
me to ask the nurses to up her morphine dose (she’d pointed to her
digital dosage box and managed the words “It’s not enough”) and the
nurses told me they could not “because of Harold Shipman”. Pratchett
stared, I thought, blankly so I began reminding him about Harold
Shipman. “Of course I know Harold Shipman!” he boomed. “And yes, he made
it worse, absolutely. As did middle management types – ‘We don’t want
to be sued’…”
This year, he was appalled by the fate of locked-in syndrome sufferer
Tony Nicklinson, who starved himself to death after his right-to-die
appeal was lost. “I went ballistic,” fumes Pratchett. “He was most
emphatically compos mentis and had the love of his family. There is no way it could be murder.”
He remains, though, optimistic, still advocating the creation of “a
reverse coroner’s court” where the terminally ill, their doctor and
closest loved one can be heard and individually assessed “before
whatever disease puts them in a bucket”, he notes. “And if the argument
is that it’s bad for society because we don’t know what’s going on, let
society see it.”
Pratchett himself has vividly shown us in his Bafta-winning documentaries both the daily reality of Alzheimer’s (Living with Alzheimer’s, 2009) and the procedures at Dignitas in Switzerland (Terry Pratchett: Choosing To Die, 2011), where we saw motor neurone disease sufferer Peter Smedley, 71, die in his seat, wife by his side.
“So we persevere,” he nods. “Everywhere assisted dying is practised,
there’s been no case of anyone having it done against their will. Where
people say ‘Granny will be pushed into the garbage system’, it simply
has not happened. I’ve even phoned my way through to the FBI. Now, we
have to get the Vatican off our backs. The God-botherers. And the
shallow politicians that think ‘We might get kicked out if we change the
law’. The bastards.”
In 2012, Pratchett’s imagination remains as robust as his personality
– “My creative self seems to be alive and well; I’m still me”. Dodger,
his latest novel for young adults, a lively tale of a sewer scavenger in
Dickensian London, sees Pratchett’s gloriously vivid language
undiminished even as he notates his words to voice-recognition
technology.
He wrote the book partly because he loves the Victorian era – “It’s
the most interesting one,” he chirps before an enormous anecdote ensues
about 19th-century “corset wars” – and partly because The Youth need
better teaching – “The young generation has no fucking idea about
history!”
Pratchett remains a conversational riot, if impossible to interrupt:
any attempt to interject into his infinite anecdotes is met with a
highly mischievous “Shut up and let me finish my story!” Sometimes, when
memory fails him, he’s sure it’s merely “being in my 60s”, as perhaps
is his habit of recalling his colourful past: stories about his parents,
who he adored (his mechanic dad was “stoic”, his formidably bright,
book-encouraging mum could “see through rocks”), about being “a
disruptive force” at school in High Wycombe, a cosmology-obsessed
teenager forever bringing in Private Eye and Mad magazine “even though Harry (the headmaster) was determined to keep the ’60s out of High Wycombe”.
At 17, he eschewed university for newspaper journalism on the local Bucks Free Press,
where his experiences were extreme: seeing a dead body on his first day
– “Very, very dead, and I thought ‘Isn’t it amazing, you can go on
being sick when you’ve run out of things to be sick with?’” – being
pulled from a well full of pig-muck and witnessing body parts scattered
along a railway line after a woman’s suicide – “She’d been standing by
the track smoking fags and I counted the stubs. She smoked six and then
stepped in front of the train”. It’s here, too, he first
encountered notions of assisted dying, remembering the former nurse who
told him she’d “twice killed somebody” back in the 1930s, ending the
agony of a cancer patient, at the behest of his wife, through pillow
suffocation, a nursing practice known as “showing them the door”.
No wonder he became both a pragmatic realist and professional
absurdist, a one-man Monty Python of satirical science fiction and a
humanist without religion. “I have no belief in the war God of the
Israelites,” he announces today, though he hopes, with his
scientific leanings, our energies might live for ever, “I think we all
would like to think so”. Back in the ’70s, he and his wife of 44 years,
Lyn, were “hippies, with jobs”, choosing to have one child (Rhianna,
who’d become a successful computer games writer) as a contribution to
population control (they were evidently ahead of their time). How does
he feel, as a hippy, about his fortune?
“If there’s one thing that makes me happy about being a millionaire
it is that all the money I’ve got, I earned, and nobody died,” he
smiles. “Nobody was momentarily inconvenienced by the work I did. Widows
and orphans had no problems from me. People kept saying ‘Can we have
more books?’ and I said ‘Okay, here’s another one – kerching!’”
It’s mirth, clearly, that has always buoyed the Pratchett soul and he
literally cries with laughter today recalling the wooing of his wife
when he was a trainee journalist who owned a motorbike but no car.
Unable to afford both the Chinese meal and the taxi to pick her up in
for their first date, he colluded with a “sympathetic” cabbie to
rendezvous round the back of her home and then casually drive together
to the front. “So I dropped my motorcycle in the hedge, more or less,”
he cackles. “Off with the Bell Star jacket, on with the snazzy clothes,
run-run-run – oh, it’s coming back, it’s all coming back! – and got
there just as the car pulled up. So it looked as if I’d been driven the
whole way but only had to pay him from then on. And it worked!”
And he dabs, shoulders shaking, at his eyes. Today, his medical
prognosis is good – “People with PCA can go on for quite a long time,
I’ve been told” – so he’ll simply carry on writing his books and
fronting (and funding) his increasingly urgent law-changing crusade,
still wishing, as he so memorably detailed in his spellbinding Richard
Dimbleby Lecture, Shaking Hands With Death (2010), to die seated in his
garden, brandy in one hand, legal potion in the other, with 16th-century
English choral composer Thomas Tallis on his iPod.
He is, surely, the least morbid spokesman for The Reaper alive today, a chortling champion of the
light in life before the darkness inevitably descends. The wizardly Sir
Terry Pratchett, it turns out, can even make you laugh on your deathbed.
“Mr Smedley was laughing with me at the last minute,” he smiles. “I
was telling him I take a lot of pills every day and these days pills
don’t come in pill boxes, you have to really pull them out [of the
container]. So you’re putting pressure on and pressure on and you get
what I call the toilet ping, where it goes ckck, bong, ck, ck, ping,
splash! And that was his last laugh. Before he died. He laughed.
He had a good death. Possibly one of the best.”
