Terry Pratchett (4)

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DIGNITY IN DYING

Folks,

I expect that most of you know that I am determined to die
peacefully in my own garden before my Alzheimer's has reached its
most unpleasant stage, which might still be quite some time away.
That is why I am now a patron of Dignity in Dying and my new
friends there have asked me to pass on this link to a petition to
properly legalise well regulated assisted dying in the UK. It has
been put together by people who know their stuff and have some
political awareness; if it had been written by me the paper would
have burst into flames because I believe the religious right,
having lost the original suicide debate in the 60s/70s and the
abortion debate in the 60s are really getting behind this one and
are portraying what could be a carefully and sympathetically
delivered service to people with serious, debilitating and
untreatable diseases as if it's an open door to a nationwide cull
of old people. Their arguments are frequently pernicious and
highly objectionable and must be combated.

Click HERE to sign the petition.

Many thanks.

Terry Pratchett

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Folks,

I had a lovely letter the other day from very religious lady
concerned about my health. She said that I should consider my
Alzheimer's a gift from God. Frankly, I would have preferred a
sweater...

Coming back from the North American Discworld Convention has
hardly been a rest and so my own personal con report and
additional thanks has had to be delayed. More on that later.

On the up side, the progress on I Shall Wear Midnight is rapid,
thanks to Dragon Dictate and rather more to the guys at
TalkingPoint - the front end that makes it much easier to use -
who made contact with me through this very page. I'm so impressed
by it, that if my typing ability came back overnight, I would
continue to use it. I have no hesitation in praising the product
as I have already paid for two licenses and a year's maintenance.
Anyway, we have to do this stuff otherwise what was the point of
Star Trek?

The next few weeks are pretty well stuffed with things to do
regarding Unseen Academicals and the celebration football match in
Wincanton at which I shall break my life long vow of never
watching a game of football.

The next big public thing in our diary is the Irish Discworld
convention, which takes in the Falls Hotel in Ennistymon Co. Clare
from the 6th to 9th November. http://idwcon.org/

More later,

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Discworld author Terry Pratchett has spoken out against new guidelines on assisted suicide which were issued last week.

The guidelines do not provide immunity from prosecution – assisting suicide carries a prison sentence of up to 14 years – but are intended to offer clear advice to the relatives of people wishing to kill themselves about whether they would face prosecution.

Pratchett, who revealed in 2007 he was suffering from early-onset Alzheimer's, said yesterday the new guidelines had him "a little more angry". "No one is really happy with them," he told the BBC Politics Show West. "It would appear they are suggesting that people could help you kill yourself, and then the police would investigate as an act of murder and decide whether or not this was really the case, which seems a very lame way of doing things."

The bestselling fantasy author suggested instead "that there should be possibly some kind of non-aggressive tribunal system where someone who, for whatever reasons, wishes to end their life – and I would only really accept medical reasons, I must say – can make their points to a magistrate or a coroner, along with the medical evidence on which they wish to end their life". This, Pratchett felt, would "protect the vulnerable", and "could weed out the hypothetical granny who is being urged by her heirs to commit suicide, so they can get their hands on her money".

Pratchett said that he himself was "feeling fine", and that although he can no longer drive a car or use a typewriter, he is continuing to write using a speech-to-text programme. "I can now talk to the typewriter and get the work done," he said. Pratchett's new Discworld novel, Unseen Academicals, is published in October.

"The reason I wish to end my life is because of a medical condition – it's not bad yet and I'm full of the joys of spring, but it will eventually get very bad and Alzheimer's is the most feared disease among the over-60s. It is not nice. I do not wish to be there for the endgame," Pratchett said. "I spoke to a doctor who told me when he was a young doctor he walked through a ward of terminal Alzheimer's patents who effectively were not there any more, and he wondered why they were being kept alive, when there was very little there to keep alive."

A 12-week consultation on the new guidelines is currently ongoing, with the finalised policy to be announced next spring.

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Recently, Sir Terry Pratchett has been having a recurring nightmare. He finds himself in a strange city where all the buildings are derelict and everything is bathed in a thin grey light. ‘It’s like a southerner’s idea of Leeds, if you know what I mean.’

In his dream, he wanders around trying to find somewhere familiar. ‘On one occasion I found myself in a building and I looked out of the window and saw this steam engine on some tracks.

'The next time I was on the train, but I couldn’t get out of the carriage. And then the time after, I crawled up this embankment to where the train was, only to find the rails had been cut off at either end.’ What did you make of that? I ask. He chuckles. ‘Well, I think I know a metaphor when I see one.’

Pratchett lives in a narrow Wiltshire valley with a stream running through it and sheep munching on the hillsides. When he opens the door of his studio – a tiny, white-bearded figure in his usual black shirt and trousers – he looks thoroughly fed up.

‘I hadn’t realised there were going to be so many of you,’ he mutters – there are five of us, including the photographer and his two assistants. ‘Mind you, when Panorama came to see me, there were 25 of the buggers.’

He leads the way into his studio. It’s done out in a vaguely ecclesiastical style with a vaulted roof, oak beams and two enormous lecterns with dripping candles attached. In one room is his desk with six computer screens arranged around it like a bay window – he works on them simultaneously.

In the other is a black leather chair. Mounted above it is the specially designed helmet that fires bursts of infra-red light into his head to try to reverse the effects of posterior cortical atrophy – a form of Alzheimer’s – with which Pratchett was diagnosed in 2007 when he was 59.

What makes the most immediate impression, though, is a strong smell of mice. ‘They’re unavoidable in a place like this,’ he says. Maybe so, but surprisingly, given what a fastidious, even fussy, man Pratchett is, the place is also very dirty. There is thick dust around the edges of the rugs and the lavatory looks as if it hasn’t seen any bleach in a long while.

We sit down next to the helmet, and a woman who might be the housekeeper, or possibly Lady Pratchett (no indication is given), asks if we would like coffee. ‘I’ll have brandy in mine,’ says Pratchett, which again seems quite odd, given that it’s only 11.30 in the morning.

It’s tempting to ascribe some of this to the effects of the PCA. But as Pratchett talks, it soon becomes clear that there’s nothing wrong with his vocabulary, or his fluency.

Periodically, though not very often, he’ll break off in mid-sentence and there will be an awkward pause, and once or twice he comes up with some startling non sequiturs. However, I’m being quite truthful when I tell him later on that if I didn’t know he had PCA, I would never have guessed.

‘That’s because I talk,’ he says. ‘I can turn a phrase and actually I can turn a phrase bloody well when I want to. But if I took off this shirt and you threw it on the floor and perhaps pulled a sleeve inside out, I would be able to put it back on again, but you would see the celebration happening afterwards. It’s all to do with one’s apprehension of the world.

'My eyesight, as eyesight, is perfectly good. But how the brain deals with what my eyes can see can be pretty ropy. For instance, I might glance down and not see that cup on the floor. If you told me the cup was there, I would see it. However, the brain is filling up the space with something else. But because I come out with words properly used, like apprehension, you think there can’t be anything wrong with this guy.’

Do you think the helmet does any good? ‘I don’t know,’ he says. ‘I just don’t know… Does it do me any harm? I don’t think so, and that’s the most I can say.’ Pratchett also takes Aricept, the only drug that’s shown some success in halting the progress of Alzheimer’s. As to whether that’s working, he doesn’t know either. ‘I’m not really sure how the PCA will develop – it’s very hard to tell.’

For much of his writing career, Pratchett has written an astonishing two novels a year, clocking up worldwide sales of 45 million. Now, he’s down to one. He no longer types – it was problems with typing that first prompted him to seek medical advice – but dictates into a speech-to-text programme that instantly transcribes his words into prose.

However, the quality has not suffered. Pratchett’s new novel, Unseen Academicals – out in October – is the 32nd novel in his Discworld series and fizzes as exuberantly as all the others. Meanwhile his last book, Nation – not one of the Discworld series – has been turned into a play by Mark Ravenhill and is opening at the National Theatre in November.

Nation is about a boy called Mau on a Pacific Island who believes he is the last person left alive in the world. Reading the book, it’s hard not to be struck by how vividly the boy’s sense of helplessness and isolation is evoked. It was also written around the time Pratchett’s Alzheimer’s was diagnosed and I found myself wondering if the boy’s emotions mirrored his own.

There are also several mentions of ‘shadow-worlds’ in the book. Anyone who saw Pratchett’s two-part television documentary, Living with Alzheimer’s, earlier this year, will recall him breaking off in the middle of a reading and saying he couldn’t carry on because ‘this shadow keeps falling across the page’.

‘Now hold on,’ says Pratchett when I mention this. ‘Could I correct you there? I swear I told my editor the outline of Nation some four years before I was diagnosed. But that said, and this is a thing that really puzzles me, I understand that PCA is something that can be with you for quite a long time before it’s diagnosed. So you do have to wonder if there are channels that we have no conception of.’

It’s plain that Terry Pratchett can be a touchy, abrasive man, keen to remind you of his erudition and intelligence. He has a fondness for words like ‘deleterious’ which he articulates with relish. It’s plain, too, that he is by no means without vanity – hence the black clothes, the matching fedora and the cane that he carries at Discworld conventions. To begin with, he wraps his arms tightly around his chest. But as he talks, he slowly relaxes and becomes less chippy, less defensive.

There’s also something of the White Rabbit in Alice in Wonderland about him. When he was a boy, Pratchett says, he always had a sense that he had arrived at school about a week after everyone else. ‘It was as if they’d gone to all the orientation lectures and I could never quite get a grip of anything.’

He grew up in poverty in Beaconsfield, in a house with no bathroom, no electricity and no running water. A dreamy, introspective boy, he recalls his mother reminding him recently that, aged about six, he used to see people in colours. ‘Apparently I’d say things like, “I like Mrs So-an-so, she’s so purple.” And this would have nothing to do with what she happened to be wearing.’

It was around this time that he had a peculiar vision. Walking back from school one day, Pratchett went through a chalk pit.

‘As I climbed through the chalk pit, I saw these fish. They were like Jurassic fish – armour-plated things with bull-noses. And they were swimming in and out of the chalk as if they were underwater. That memory is as clear in my mind now as it was then. I can remember thinking, “Is this really happening, or what?’’’

This is a question that has hung over much of Pratchett’s subsequent life and work. As a child, he read extensively – mainly sci-fi and fantasy literature, which he bought from a shop in High Wycombe that specialised in soft porn and only sold sci-fi under the counter.

His first novel, The Carpet People, was written while he was working as a junior reporter at the Bucks Free Press. It started out as a weekly narrative to fill a column called the Children’s Corner, and it was only after several months that Pratchett realised – rather to his surprise – that he’d accumulated enough material for a book.

He went on to become the press officer for the Central Electricity Generating Board. ‘For years, I never thought much about being a writer. Periodically, I’d write a novel and it would be published and I’d get a little cheque. But it wasn’t until The Colour of Magic started to sell very well that it occurred to me that I appeared to be good at it.’

By then he had already embarked on what would turn into a magnum opus – his Discworld series. Set on a large disc resting on the backs of four giant elephants, supported by an even bigger turtle which is swimming through space, the books owe more to writers like Mark Twain and Jerome K Jerome than they do to conventional sci-fi.

‘I remember I got rather fed up with all the imitation Tolkien stuff that was coming out at the time. There was also a lot of medieval fantasy written by people who clearly had no idea what medieval life was actually like.

‘Basically, I decided to have fun with it. I must have read every issue of Punch published in the 20th century, and I think in the process I picked up the true voice of English humour – that amiable, fairly liberal, laconic voice which you find in something like Three Men in a Boat.’

As to the question that his hordes of devoted fans never tire of asking, ‘Where does it all come from?’, Pratchett happily admits he doesn’t have a clue. ‘One of the delights of the job is controlled serendipity. I have lots of weird books like The History of False Teeth and The Frozen Water Trade in the Southern United States in the 18th Century.

'All this stuff streams down into me. My own books drive themselves. I know roughly where a book is going to end, but essentially the story develops under my fingers. It’s just a matter of joining the dots – and that process really hasn’t got any more difficult since my diagnosis.’

While Pratchett’s brain may be buzzing with snippets of arcane information, there’s nothing in the least chaotic about the way he works. ‘I’ve always felt that what I have going for me is not my imagination, because everyone has an imagination. What I have is a relentlessly controlled imagination. What looks like wild invention is actually quite carefully calculated.’

What happens if you don’t write? Behind his round gold glasses, Pratchett looks quite blank. ‘Um… I really don’t know. I have to write because if I don’t get something down then after a while I feel it’s going to bang the side of my head off.’

Over the last couple of years, Pratchett has turned from a famous writer into a public figure. Not only has he become a spokesman for Alzheimer’s research – he’s donated £500,000 to the Alzheimer’s Research Trust and has presented a petition to Gordon Brown asking for more funds – but he’s also taken up the cause of what he calls ‘assisted death’. He hates the phrase ‘assisted suicide’ because of the stigma still attached to suicide.

Nowadays, people are as likely to stop him in the street and ask him about dying as they are about his books. ‘It’s extraordinary, the number of people who come up to me. Secretly, I think everyone hopes that when they reach the end, a doctor or a nurse will give them a little extra dose of something.

'However, I do get a lot of weird Christians with a little red glint on their spectacles and spittle at the corner of their mouths who say things like, “The Commandment says, Thou Shalt Not Kill.” And I always say, “Well, that’s rather strange given how bloodthirsty Jehovah was.” Personally, I think the Commandment should read, Thou Shalt Commit No Murder, which is rather different. In any case, it’s all made-up.’

As for his own death, Pratchett insists that he is pretty sanguine about it – at least most of the time.

‘I can’t find a shred of fear about actual death. As for loss… yeah, I fear that. But I don’t fear death because there is nothing there. I don’t think you wake up and the heavenly host is looking down on you going, “Hah! You got that one wrong, didn’t you?” And not having that fear is a great release, I find. But I do fear a protracted death and loss of senses and loss of control and total dependence on other people. Of course I do.’

It’s time for Pratchett to have his photograph taken outside. Before he goes, I ask if I can take his phone number in case there is anything I need to check. He starts to give it to me, then his voice falters. Scrunching up his face and clearly making an enormous effort, he comes out with the remaining digits, as if he’s having to drag them up from the bottom of a deep dark hole.

* ‘Unseen Academicals’ by Terry Pratchett (Doubleday, RRP £18.99) is available from Telegraph Books for £16.99 plus £1.25 p+p. Call 0844 871 1516 or visit www.books.telegraph.co.uk

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Op zondag 20 december 2009 02:45 schreef wonderer het volgende:

[..]



Verder ben ik bezig in The Hogfather (vaste prik ) en komt Nation deze kant op. Ben benieuwd.

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Op zondag 20 december 2009 18:05 schreef wonderer het volgende:
Wat? Ik vind Charles Dance tof