Sir Terry Pratchett: Alzheimer’s and me

When I first visited Sir Terry Pratchett, three months ago, the field-size lawn – which leads majestically from his ancient manor house in a Wiltshire valley down to an empty brook – was neat and tamed. Now it is a riot of meadowland, as though it has run amok, with cow parsley, patches of wild thyme, dandelions, daisies and a footfall-wide, hither-and-thither lane to negotiate your way through the tall grass.

At times, in this second interview, the thought processes of the writer seem have gone the same way of his garden; ideas segue into stories that are unconnected to the subject at hand, and there is a certain rambling quality to his responses that wasn’t there before. He also seems a bit disinhibited, kicking my calf repeatedly without noticing, adjusting his tackle and leaving the loo door open while he pees noisily. But then he can still surprise you with one of his razor-sharp observations or a swift comeback. When he is grumbling about the photographers who are setting up and trampling over his precious meadow – he dislikes posing, and who can blame him? – I try to jolly him along with a lame line about the photographers’ belief that a picture paints a thousand words, and he retorts, quick as a flash, “Well, I would say a word paints a thousand pictures.”

As is now well known, since Pratchett has become something of a global ambassador for the illness, in 2007 when he was only 59, the writer was diagnosed with posterior cortical atrophy (PCA), a rare form of early Alzheimer’s disease. He decided to go public about his “embuggerance”, as he immediately dubbed it, with his characteristically robust humour, and donated £500,000 to Alzheimer’s research.

PCA mainly attacks the visual sense, making it impossible for Pratchett to type, write or even get dressed without help. As he says, “I don’t see things that aren’t there – the difficulty is that sometimes I don’t see things that are there… such as a little girl on a crossing.” The condition makes it impossible for him to drive, and means that he is extremely reliant on his longtime assistant, Rob, and Lyn, Pratchett’s wife of more than 40 years.

I had been warned that the illness meant that the writer has good days and bad days, and on this second meeting, he was fine although seemed a little tired and anxious. But the first time we met, to discuss his controversial BBC documentary on assisted suicide, Pratchett was far more forthcoming and focused, sparkly and even slightly flirtatious. On that occasion, at the end of the interview, he took me on a long tour of his property, stopping to crush amber-resin leaves for me to smell and introducing several of his six cats (called, variously, Pongo, Tigger, Patch, Garfield, Squirrel and Genghis).

We sat in one of the rooms at the back of his office, which he refers to as the chapel, the walls lined with dusty books and skulls and curious objects – none more so than a sci-fi cluster of what looks like many black earphones sprouting out of a metal hood. It is, apparently, an experimental helmet that fires light into your brain. Pratchett, who has just changed his medication for new drugs (Rob says, interestingly, that both he and Lyn feel the writer is much improved) is also willing to try the decidedly unconventional approach to his illness. “I use the helmet now and again and I actually always feel better for it. It’s like coming out of the sauna. The same effect, and my cat loves it when I do, too.”

You have described your Alzheimer’s as like having a balaclava inside your head – could you tell me more about this? “Yes,” he says, without elaborating. So is it that the condition is like a mask to your personality or is it more a rather frightening, psychologically claustrophobic sensation? “I think my personality is alive and well and kicking very hard,” he said. “But – ughh – it kind of slows you down. It makes you an old man rather earlier than you had expected. You have to take more pains – like coming down steps. Next step, next step, next step – and this property is all ups and downs. In a sense, you have to – ahhh – to – umm – control what once upon a time you more or less did without thinking.”

I suppose a bit of that comes with ageing anyway? “That’s the trouble! I do not know what is normal. I’m 63 – never been 63 before. What is the problem with Alzheimer’s – and especially PCA – is that everyone around you says you haven’t got it. I go upstairs and forget why I went. ‘But everybody does that,’ you’re told.”

In the main room of the chapel is a desk with no fewer than six computers on it. Pratchett has at least two books on the go at any given time, and has got round his inability to type by using TalkingPoint technology, where he speaks to the computer, and at the end of each day Rob reads back the words. “And when you hear them spoken that’s where you find the flaws. It’s amazing how the mind retains it,” Pratchett says. “I’ll say to Rob, ‘Hang on, “extraordinary” has been used at least three times in the last minute’ – so that part of the brain is still alive and kicking very well.

“What I want to add next to my computer is a text to speech device – so that a nice voice – preferably [which he pronounces “pwefably”] Joanna Lumley’s – will read back to me what I have written.” It could be quite a turn-on? “You have a dirty mind… I like that in a woman,” he jousted. “Initially, I thought of a BA first-class air stewardess – but some of the ones are aggressively [“aggwessively”] American and so that doesn’t work. What you want, almost, is a female Hal that just gently tells you what you said.”

Terry and Lyn, a slight woman with a blonde bob of hair and a diffident manner, look like the sort of nice couple whom you can imagine running a second-hand bookshop in somewhere like Hay. They seem down-to-earth and quite unaffected despite the fact they must, by now – given that Pratchett was the UK’s biggest selling novelist of the Nineties, until J. K. Rowling pushed him off his perch into second place – be enjoying a position of extreme affluence.

At one point, when we are talking about whether he might be considered posh (I say not), Pratchett says, “But I live in quite a large house and I have quite a lot of money.” Later, when he talks about dying, if he goes first, he says: “I would like my wife to have enough money to live well in this house for as long as she wants to.” I say, of course that will be the case, since he must be a millionaire, many times over, but it is clear that like a lot of very wealthy people, Pratchett doesn’t really care to see himself that way.

“People who are lucky enough to have bought certain properties in London some time ago, and stayed there for a long time, are probably worth a lot more than me,” he says. “But I am the first person in my family, as far as I know – at least going back to my great-grandfather – to own his own house.” Come on, Terry – you must be very well off by any definition. “Oh, I am very well off, yes,” he admits, a bit begrudgingly.

If you were a flashier individual, you could have a house in the Caribbean, an apartment in Paris, a penthouse in Manhattan… “But what’s the point? You’re in the Caribbean and where are your favourite pants? ‘Oh hell, I’ve left them in my house in France.’ And so then you have to get into your bloody jet to go Paris and then you find that, after all, you’ve left them in your pied-à-terre in Sweden. And then you’re wondering who’s breaking into all the places that you’ve got everywhere else.” The one luxury he will admit to is travelling first class when he and Lyn fly to Australia, which is one of their favourite places. One of the reasons being, possibly, that everyone he’s met there has read his books, “so we were kind of wafted on the wings of fandom”. The last trip they made there, however, was the first holiday the couple had taken in ten years.

I wonder whether Pratchett has experimented with drugs – has he ever smoked dope, for instance? “Oh yes,” he says, happily. “But I smoked it in the same way that Victorians smoked cigarettes – it was something you did as a pleasurable thing, like having a pint… And then you forgot about it until the next time you wanted to do it.

“So it never really dominated me in any way. But I’ll never make a politician because I must say that I quite enjoyed it.” So you did inhale? “Of course. The one thing it did was enhance music, because it slowed you down so you listened properly. Then I found a really decent beer had the same effect. I don’t drink an awful lot – apart from brandy, of course [I’d spotted an unopened bottle on Rob’s desk] – and that doesn’t count because it’s medicine. It’s in the British Pharmacopoeia, you know.”

I was really asking about the drugs to see if there was any comparison between that sort of state of mind and what he is experiencing now, to which he replies, brilliantly: “Well, I’m a fantasy writer, you know, you train yourself to think that way.”

Pratchett has sold more than 65 million books worldwide, which have been translated into at least 37 different languages; won awards (including the prestigious Carnegie in Britain); had a non-Discworld book, Nation, which he describes as “fairly harrowing”, adapted for a stage production at the National Theatre; had his humour compared favourably by critics to Wodehouse and his wit to Waugh; received an OBE as well as a knighthood for his services to literature. And yet he still seems to smart about the way he is treated by the literary establishment. During a phone conversation, after our first meeting, when we were talking about his love of sometimes arcane language, he said, rather sharply – “It’s not surprising that a Booker-level author would know such words.” Despite his protestations to the contrary, I believe it rankles with him that his books are unlikely ever to be considered for that prize.

He likes using his novels to explore issues that exercise him, be it changes to the NHS or the closure of post offices. In his new one, Snuff, the 39th in his Discworld series, he addresses the heavy subjects of slavery and genocide, through the treatment of the much-despised goblins.

Pratchett took the initial idea of Discworld – a flat disc which rests on the backs of four elephants who are themselves standing on the back of a giant turtle – from the beliefs of the ancient Hindus, as well as the Native Americans. He mixed it up with some science-fiction ideas and laced it with his sprightly writing and large doses of peculiarly English, often very silly humour. The idea, he says, was to make the world a totally un-sensible place, “but try to make the people on it as sensible as possible so that they’re not just your average wizards but they are human beings we can relate to”.

He tells me that Mort, the fourth Discworld book, published in 1987, was the first of his to get to No 1, “and all the bastards that like to keep fantasy off the bestseller lists by then had been defeated. By the way, do read my T-shirt.” He puffs out his chest and I read out loud, “How to be a fantasy writer. 1/ Write an excellent story with a complex plot and great characterisation. Include social and political commentary, touch on such subjects as the nature of belief and journalistic freedom. 2/ Put in one lousy dragon.” He sits back and grins, “Yesss, so that’s why they call me a fantasy writer.”

Now Pratchett, who is noticeably more fidgety today, reaches over his cluttered desk to a bashed-up looking tin with the legend Dried Frog Pills – which is where he stores his snuff. Do you like snorting it? “It is legal. I have a friend who gives me some and every now and again I like a pinch of it. It does lift you up – it’s a bit like coffee. I’ve never smoked in my life – well, at least, not tobacco.”

I try to get the writer to talk about his new novel, but really he’s far more interested in gassing about the other books he’s working on now – one about poor people in Victorian England and the other “about a lot of quantum bollocks” in tandem with a science-fiction writer. He started writing the novel “in the evenings for something to do, because I don’t like to sit around not doing stuff”, he says.

But what about Snuff, I guide him back gently – it’s written with your usual light touch, but it’s about a pretty serious subject, isn’t it? “Yes, and I always find myself arriving on the side of the underdog. I mean, we all know goblins are the bad guys. They don’t smell nice and they talk strangely and they might nick things but really only in a kind of half-hearted way – it’s not like they’re bankers, or anything like that.”

There is a touching storyline of a goblin girl who, taken under the wing of a famous children’s fiction writer, becomes transformed under the author’s tutelage. But less appealing for me was the slightly obsessive preoccupation with poo, through the enthusiastically self-educating Young Sam. Pratchett naturally enjoys a bit of potty humour. When he talks about what makes him grumpy, for instance, he describes the annoying process of trying to extract his many pills from their metallic layers, “and if you are a gentleman and have left the toilet seat up, you fall victim occasionally to the ‘toilet ping’. You’re pushing this bloody pill out, it bounces off, falls down and you hear a SPLAT!” Another pill hits the pan? “And it’s so difficult to wash them – ‘he said, laughingly’,” he jokes.

Pratchett describes his romance with Lyn as the story of The Lady and the Tramp, “because I was in the council houses in Forty Green, Beaconsfield, and she was in a chalet bungalow, which her parents had built, in a very nice place in Gerrards Cross.”

They met when he was a reporter on the Bucks Free Press and she was an art student, then an art teacher, which “she more or less gave up doing because it wasn’t something she was particularly interested in doing any more”. He is incredibly protective of Lyn, who does not exactly relish all the press attention – and will not allow journalists into their home after a hack was rude enough, years ago, to comment unkindly about the decor of their Somerset cottage.

Pratchett was an only child, Lyn one of two, but the couple decided not to have any more children after their daughter, Rhianna, was born in 1976, “because we were sort of eco-freaks at the time, and also the wages of a trainee journalist were pretty damn small. We had a very small cottage and we thought we can bring up one child there – although probably once upon a time, seven children were brought up well in that cottage.

“We didn’t know what the future would hold and by the time we started thinking, ‘Well, we could have had more,’ it would have been rather silly to do it. My motto is, if you look around and say, it’s not too bad here, considering what it could be – don’t go complaining.”

Did he get emotional when he had a child? “Well, of course, there’s always that instant, ‘You know, there’s a nice little puppy,’ and it works up from there.”

So what’s Rhianna up to? “Well, she’s had lots of boyfriends and kicks them out when she’s had enough. But she’s very happy and we speak often. She’s very peripatetic because her job – writing computer games – takes her all over the world.” I ask him whether she writes books, too, and unwittingly touch on some sort of nerve because he splutters: “Well, no, she bloody well could. I mean, we’ve been talking about things and, in fact, I can’t say because this is all top secret but… she knows about narrative and…” He segues off into talking about the 15-plus bookcases he’s got. I’m left wondering whether there have been family discussions – which seems poignantly plausible – about whether Rhianna might want to extend Discworld’s life after her father’s death.

The BBC documentary, Terry Pratchett: Choosing to Die, involved the writer spending time with three men suffering degenerative illnesses and talking about the way they had chosen to end their lives. The most controversial part of the programme was the assisted suicide of Peter Smedley, who had motor neuron disease and was determined to die at Dignitas, in Switzerland, with his wife of 30-plus years by his side, as well as Pratchett and the documentary team who filmed his dying moments.

What invested the programme with an extra sense of drama was the viewer’s knowledge that, in part, this was a journey of discovery for the writer, too, because of his own incurable degenerative illness. Pratchett was pretty emotional about Peter’s last moments when we spoke – particularly the very English manner in which he wanted to thank all the crew before he drank what he referred to as his “hemlock”.

So what sort of reception did Pratchett get after the programme was shown? “Everywhere I went, people were all saying the same thing. Some were sort of slapping me on the back, others were saying, ‘Thank God, you did it – it was a tough thing to watch but we’re glad we watched it.’ Or, ‘What we saw was nothing like as terrifying as it was being lined up to be… This poor man goes to Switzerland, dies in the arms of his wife, and everybody goes home.’

“I also think there was a sort of low-grade – what’s the word? – impatience or rage that the government is saying this can’t happen because of the effect on society, because it’s not society that is dying, it’s Joe Bloggs who doesn’t want to lie there in, as it were, the mouth of the beast for the rest of his life. And, in a sense, many of the things I said were sort of being talked back to me because people were thinking the same thing.”

One of the aspects of Peter’s death that some commentators found disturbing was that his request for water was denied and also the sound of his death rattle was discomfiting. “Well, death is generally not quiet and the dying sort of goes through the body for quite a long time,” Pratchett says. “Everything was known to Peter in advance, and he knew that if he had been given water, he would either have taken a much longer time to die or he would have woken up with brain damage, which was certainly not part of his plans for the day.

“I would not concede that Peter had a bad death, considering the number of deaths I know about, but he would have had a better one if he had been a murderer on death row.”

How Pratchett chooses to die, when the time comes, is quite clearly a private matter. He has said, in the past, that he would like to be sitting in his garden, listening to some beautiful music, with a glass of brandy in his hand. He has no belief in the afterlife but he does rather fancy the idea of emerging into some sort of gallery surrounded by all the other departed authors who tickle him. So who do you fancy as your neighbours? “I think I’d like to have Alan Coren on one side and Robert Robinson on the other, because they were both great talkers.” He’d be rather less keen on having Germaine Greer anywhere near him, he says, not because she’s a feminist but because she tends to go in for a “boomerang harangue”.

He once said, long ago, that he’d like his epitaph to read, “Here lies Terry Pratchett, who achieved the world record for surviving in full possession of his faculties to a great age.” Now that his faculties have been compromised by the embuggerance, would he like to change his epitaph? “I was going to say, ‘What do you mean, my faculties aren’t all there?’ but I know what you mean,” he says mildly. “How about, ‘On the whole, he didn’t do much harm’?”

The Times