HE may now perhaps be more famous for his fight against the disease that is slowly robbing him of his faculties than for the 70 books that have made him a bestseller, but that will never stop Terry Pratchett from writing ... or from fighting
S IR Terry Pratchett has adjusted his top hat and ordered an iced bun and is now giving a vivid account, unasked, of the recent examination of his prostate. The doctor, it seems, had asked him if he was happy for her to carry out the procedure, or whether he would prefer she fetch a male colleague. “Frankly, seeing as I’d walked in and dropped my trousers, I don’t know what made her think I had any doubts.” One minute in to the interview and we are already at the point of rubber gloves and breeks round ankles. Probing Pratchett, one feels, is going to be straightforward.
Ah, well, if only. Although he seems fairly comfortable with intimate discourse, the 64-year-old author’s free-range mind does not settle for long on one subject. So, in order to discuss with him, say, the progress of his Alzheimer’s disease, it is necessary to first listen as he holds forth on poverty during the reign of Victoria, his upbringing in rural Buckinghamshire, the war service of his father, the ubiquity of sci-fi book shops (“In every major town, somewhere near the porno parlour ...”) and the computer software that allows him to dictate his novels now he can no longer type. A Pratchett conversation, in full spate, is always throwing off new streams. None of it is dull, and some of it is highly pertinent, but one does sometimes wish he would shut up and answer the question.
We meet in Salford, in a café on the ground floor of the BBC building. Pratchett has travelled north from his home near Salisbury in order to appear on breakfast television and promote his new novel, Dodger – his 70th book, and one of three being published this year. Much of what he writes sells in enormous quantities. He was, until JK Rowling came along and queered his pitch, Britain’s most popular author, and can boast worldwide sales of 80 million. His Discworld fantasy novels are a cultural phenomenon in themselves, having spawned conventions, which the author attends and which avid readers often attend in costume as characters from the books – witches and golems and death et al.
Since late 2007, however, when he revealed online, in a statement titled ‘An Embuggerance’, that he has a rare form of early-onset Alzheimer’s, Pratchett has become familiar to the mainstream as the public face of the disease and as an advocate for assisted dying. His 2011 television documentary Choosing to Die, in which a man was filmed ending his life with the help of the Swiss organisation Dignitas, won two Baftas and was, whether or not one agrees with his views, extraordinary and compelling television.
Although Pratchett has written a great many books, which have given pleasure to hundreds of thousands of people, does he ever feel that it will be the documentary, rather than the writing, that will come to be regarded as his masterpiece and legacy? He shrugs this off. “I think the biggest legacy was actually standing up and saying, ‘I’ve got Alzheimer’s.’”
Pratchett’s form of Alzheimer’s, posterior cortical atrophy, can cause problems with vision, such as recognising faces and symbols, as well as literacy and numeracy. As the disease progresses, people develop typical Alzheimer’s symptoms – memory loss and confusion. “This disease slips you away a little bit at a time and lets you watch it happen,” is how Pratchett put it in an article four years ago. Now, he says, he suspects the full-blown disease might hit him all in one go. As things stand, he doesn’t see much difference between himself and how his father and grandfather – who did not have Alzheimer’s – were at his age, which is to say a little forgetful, but not dramatically so. “I’m not lost for words,” he says. “Certainly not new words.”
More obvious are the problems with his vision, a sort of disconnect between eyes and brain. When he rises to visit the toilet, I notice that he is unsure which is the gents and which the ladies, seemingly having problems in interpreting the symbols on the doors. He can have difficulty in reading (invited to give the 2010 Dimbleby lecture, he requested that his speech be read by the actor Tony Robinson) and he no longer physically writes his own books. He dictates, instead, into a voice-recognition programme, and delights in teaching the computer new vocabulary – such as the French word enceinte, which means both pregnant and a fortified tower. It must be some consolation that he can demonstrate his intellectual superiority over the machine, even while relying upon it so heavily.
The computer is now being put to use on Pratchett’s autobiography. What is it like for someone who is losing their memory to write a memoir? “Oddly enough, the memories that suffer most are the new ones,” he replies. “I can’t remember your name, but I can remember all the songs I sang in the old tin tabernacle I went to as a kid. Of course, everyone knows what Sunday school is. It’s to allow mum and dad to have a bit of nookie in the afternoon. But I can remember the words of the songs, and lots of hymns ancient and modern. I can remember lots of things about my school days.” And is it quite a pleasant and comforting thing to be able to use his memory in that way? “Well,” he nods, “yes.”
He decided to go public with his illness, having been impressed by the example of Richard Dimbleby, who in the mid-1960s admitted he was ill with cancer, a word which at that time was still taboo. Pratchett wants to do for Alzheimer’s what Dimbleby did for cancer – name the demon as a first step towards slaying it. Yet one senses some frustration, a little injured vanity, in the way he is now, arguably, better-known for the degeneration of his brain rather than for the riches it has generated. “I’ve done such a lot,” he sighs. “Christ, the Queen knighted me.”
With his full white beard, antic eyebrows, top hat and black velvet smoking jacket, Pratchett looks like the Archbishop of Canterbury in disguise as a small Victorian undertaker. This get-up, a variation on his trademark fedora, is in honour of his new novel, in which Charles Dickens and the titular Dodger – a lad who makes his living scavenging lost coins and jewellery from the London sewers – attempt to save a mysterious young woman from being murdered. The book is an exuberant romp that plays fast and loose with literature and history, and which was inspired not so much by OIiver Twist as by Henry Mayhew’s London Labour and the London Poor – a brilliant journalistic account of the street professions of his day, including mud-larks, flower-girls and prostitutes.
Pratchett first read London Labour and the London Poor as a young teenager. He has a great love of Victoriana. Having outgrown the delights of Beaconsfield Public Library, where he had secured a Saturday job in order to be allowed access to the adult section, he began to haunt the second-hand book shop in the next village, spending his pocket money on bound volumes of back issues of Punch, a magazine founded by Henry Mayhew in 1841 that itself features in Dodger. “Every person who wrote satire in the English language would at some time be featured in Punch,” he recalls. “So that got me on to Mark Twain, for example, and Jerome K Jerome. And because it was kind of like Private Eye, you also got some of the scandals. So all of this got piled in to me. I mean, I learned practically nothing at all from my school except to prevaricate and spit.”
But Punch was more of an education? “It bloody well was.”
Pratchett grew up in poverty – “but there was love there” – and this appears to have left its mark. Even though he is long past the point where he need have financial worries, he is still careful of his spending and wary of wastefulness. His donation of £494,000 to Alzheimer’s research, he does not count as extravagance. “In my heart, I’m just a kid from the council houses,” he says. “I can remember the old cottage and my dad coming round with the tin bath. I’m not a rich man. I am a poor man with a shitload of money. That’s how it works. Wealth is rather like the Alzheimer’s. It doesn’t define me.”
He enjoys his status as a bestselling author, it seems, more for the influence than the affluence it affords. The writer GK Chesterton lived in the same village, though he died 12 years before Pratchett was born. Pratchett recalls being told by his granny that on one occasion the express to London made an unscheduled stop at Beaconsfield just so that Chesterton’s latest manuscript could be taken on board. “And I remember thinking, ‘Christ, that’s power.’” He has no ambitions to hold up the Wessex main line, but he is happy to use his public profile if it allows him to argue for assisted suicide in articles for national newspapers or to lobby the Prime Minister on the subject.
Pratchett would like to end his own life, with the assistance of “some helpful medic”, before his disease has progressed to the extent that he cannot express formally his desire to do so. Specifically, he wants to die at home, on a chair on the lawn, washing down poison with brandy while listening to Thomas Tallis on his iPod.
It is a romantic vision, yet one that is at present denied to him by the law. Anyone in the UK who assists in the suicide of another person, for example by providing the means of killing, could face prosecution and a lengthy prison sentence. Pratchett wants this law to change. He advocates a tribunal, including a lawyer and medical practitioner, to consider the applications of those who wish to die in this way.
He has been angered by the case of Tony Nicklinson, the sufferer of ‘locked-in syndrome’ whose legal quest to secure an assisted suicide was denied at the High Court last month; a few days later, refusing antibiotics to treat pneumonia, Nicklinson died. “I have on the lectern in my office by my desk a picture of Tony,” says Pratchett. “And it’s going to stay there.”
Nicklinson’s evident heartbreak at the legal ruling appeared to sway public opinion on the issue. Earlier this month, the Tory health minister Anna Soubry said it was “ridiculous and appalling” that terminally ill people must travel abroad to Dignitas in order to end their lives.
Does Pratchett believe there might be a change in the law any time soon? “I don’t know. The new health minister said we ought to be talking about this, and she got a lot of flak from God-botherers saying, ‘This must not happen. We mustn’t talk about this sort of thing.’
“Jesus! We mustn’t talk about something because God doesn’t want us to do it?” He pauses, mid-rant, and grins through his moustache. “It’s a lovely battle. Because I know I’m absolutely on the right side.”
He is enjoying this. There is something enlivening about, as he puts it, the feeling of vitriol coursing down his neck. “Yes, I like the fight. My mum used to like a fight. If she saw something that was bad, she would go for it like an Exocet. In those days, when the money wasn’t around, if someone overcharged you by sixpence that was a fight. You can tell that my parents have had a big influence.”
His father David, a motor mechanic, died of pancreatic cancer. Is his mother, Eileen, still living? “Good heavens, no. Not long after the documentary, she had an absolutely massive stroke. I remember that day. Generally speaking, I always wear black, and when I was walking through Salisbury hospital I felt like Wyatt Earp walking through Tombstone.”
One young doctor approached him, he says, and told him about the Liverpool Care Pathway. “Have you heard of this?” Pratchett asks me. “The God-botherers don’t like it. They call it assisted dying by stealth.”
The LCP is a common method of looking after terminally ill patients, which can involve a withdrawal of treatment. “What it says, basically, is, ‘Here is someone who is dying. We will not keep on trying to keep them alive. But we will keep them as comfortable as they can be until they die.’”
Pratchett agreed that his mother should be cared for according to the LCP. “I knew there was nothing more to my mother. The lights had all gone out.”
With this, he felt that he had been able to do something for his mother that he had been unable to do for his father, who spent his final two weeks in a hospice. “My dad told me that if I ever saw him full of tubes and no good to anybody and no cure, I should just tell them to switch him off. But it would have been murder if I did that. That was horrible because he became kind of mummified and they were still pouring shit all into him.”
In Choosing to Die, discussing his own illness, Pratchett said, “When I can no longer write my books I’m not sure that I will want to go on living.” What is it about his ability to create new work that marks the border between his desire to live and wish to die? “It would be as if I had lost my voice,” he says. “And who wants to lose their voice? Everybody wants to be heard.”
But even if he could not write, he would still be a husband to Lyn and a father to his grown daughter Rhianna. Would that not be enough to keep him here? “I think the likelihood is yes.”
He is unwilling to give his wife’s view on his plans for his future. In Choosing to Die, he said he thought she would prefer to look after him through his illness, until the end, but that he would prefer not to burden her. He seems, though, to feel supported by her in his fight to change the law. “What Lyn can’t stand are bullies,” he says, “and many of the people who are opposed to assisted dying are bullies.”
Sir Terry Pratchett, it seems to me, is an old-fashioned English eccentric – the sort who knows his own mind, whose home is his castle and who comes at the world with a great appetite and an intoxicating sense of his own free will. Powerlessness, therefore, is the feeling he cannot stand. The powerlessness of Alzheimer’s, yes, but also the powerlessness of an individual whose wishes conflict with the resolution of the state.
Little wonder, then, that he takes such delight and consolation in being a novelist; every day he has the chance to make the world anew. And little wonder that he has a novelist’s natural desire to bring his own story to a close at the time he thinks best.
For the moment, though, he will continue to enjoy his brandy without poison and work without compromise. He cannot dodge the future. He knows this. But he can move towards it in a spirit of curiosity and defiance rather than submission and fear. “What I live for,” he says, “is the next chapter.”
Dodger is published by Doubleday (£18.99)