I apologise if this has already been printed but its quite interesting
http://www.stuff.co.nz/sunday-star-times/features/4866014/A-fantastic-voyage
A Fantastic Voyage
Terry Pratchett talks about living and writing with the 'Rolls-Royce of Alzheimer's' – and why he's far from done yet.
TERRY PRATCHETT is trying to catch a mouse.
"Right down there, the bugger!" he urges Rob, his assistant. "Oh!" he yelps, "I'm going to get him chucked out."
We'd been on the phone for most of an hour, and before the rodent scampered into view Pratchett had been explaining why assisted deaths for the terminally ill will eventually become widely accepted.
"It will happen because people die. Generations die. Once upon a time, and well within my lifetime, [some thought] homosexuals, ooh what nasty people. Now they are all over the bloody place." A comic writer's pause. "And jolly good job too!" You're stuffed if you're in the entertainment industry and don't like gays, he says, in his breathy, slightly pinched voice, the pronunciation something like David Bellamy's, in which the "r" in "very" and "round" sometimes approaches a "w".
"When I was a boy, people still got hanged. What happens is the next generation looks down at the stupidity of the last few generations and says, `You're bloody stupid, how can you possibly sit still for that?"'
What we are sitting still for, he says, is prolonging our lives in the face of needless pain, patchy old-age care and being told we have to hang around "because God wants you to". There's a punitive feeling to the whole thing, he says, as if we were atoning for something. "Not really, I just got Alzheimer's."
There we have it.
The author of the 36-strong Discworld fantasy series, as every single reader of the 45 million books produced with his name on knows, made public in 2007 that he had been diagnosed with a rare form of early-onset Alzheimer's disease called posterior cortical atrophy (PCA). Areas at the back of the brain slowly shrivel. In 2011 Pratchett's short-term memory and language skills are unaffected; not once does he lose his train of thought as we talk about his illness, writing, the future of books, climate change and a dozen other things. It does mean, however, that he now has to dictate his stories into a computer, and he can no longer read with ease. "I have to go and find the next line." Things like door knobs must be examined to figure out what they are for. "You have to think about stuff."
Still, he's an optimist. "It's been put to me as the Rolls-Royce of Alzheimer's. It feels more like a Bentley." Then his humorist's brain gives way to his scientist's. "All dementias end up in pretty much the same way. The paths may be different."
Ad Feedback
SIR TERENCE David John Pratchett OBE, to address him as the Queen might, was born in April of 1948 in Buckinghamshire, a county immediately northwest of London. The only child of David and Eileen, he became a journalist and then PR man (for a nuclear power plant) before settling into writing fantasy fiction. He and his wife, Lyn, now live in Salisbury in south-west England, home to Stonehenge.
He has written books other than about Discworld, including some sci-fi at the beginning of his career, but he accepts his fantasy label – with resignation. "If I wrote a book set in Tombstone, Arizona, with Doc Holliday, Wyatt Earp, the Clancy Boys – and one lousy dragon – they would call it fantasy."
His reluctance seems to stem from the feeling that – despite his devoted hordes, sales only put into shadow by JK Rowling, his eight honorary doctorates and a fat swag of awards – fantasy is not taken seriously in the literary world.
Discworld, a civilisation populated by witches, dwarves, gnomes and trolls among others, exists on a large disc resting on the backs of four giant elephants supported by a giant turtle called Great A'Tuin as it swims through space. The books are littered with humorous footnotes. Death, a frequent presence who rides a horse called Binky, transmits his thoughts to people telepathically. But the novels tackle the biggest questions in the real world, war, religion, politics, philosophy, the financial world, and satirise their stupid aspects. I ventriloquise the thoughts of one avid fan in wondering if he is driven by anger at the misuse of power.
"Could be. I never really think of it like that. I don't set out with an agenda." He quotes his character Granny Weatherwax, a witch. "Evil begins when you start treating other people as things." Does he get angry with the world? "Every day. It's part of being in your 60s. You look at the paper and think, how can people be so fecking dumb? Actually I was a grumpy young man. Terrifically grumpy." He adds a footnote. "To be a grumpy old man properly you've got to have a sense of humour to the grumpiness."
PRATCHETT HAS some right to be grumpy.
PCA ensures he can no longer write the 400 words a day he used to, and he had to train the dictation software to cope with his wide vocabulary. "An author has everybody's vocabulary," he notes. "The one that was funniest was the word `arsehole', which regrettably wasn't in its vocabulary. One of those little chores that makes the day slightly more interesting."
Once a keen signer, he now finds it too difficult to write dedications when signing books, and will stamp his name during his trip to New Zealand and Australia.
He was also a great reader. As we speak, he walks into his library, admiring his oldest tomes – "ones where two cows had to die to put a lovely leather sheen on to the book" – and his huge collection of dictionaries, including a two-volume set of Victorian slang. "That's where I got half my reference material – little corners of history that you never heard about – that I thought, crikey, I can make a story about this."
He loves everything about books – their heft, their smell – but he also likes e-books. Almanacs would make perfect e-books, he says, and wonders why all newspapers, demanding trees be felled and oil for transportation, aren't electronic.
But he thinks we have to pay attention to how we store words. A lot of books may not be read for years, but they should not be thrown away. "There are skills which are dying out because no one needs that skill any more, but one day someone will need that skill and there is going to be no one to teach it, unless someone has written down, `this is how you can do this'. If the climate changes so much that our entire way of life has to change, possibly going back to a slightly more simpler one, there are a whole lot of techniques that we have lost because generations of farmers and artisans have been displaced by machinery."
Is he optimistic about us pushing back climate change?
"No, I'm not, because we are too fff..., too bloody dumb." He did a series of books with scientists called The Science of Discworld, and came to the conclusion that earth's humanity is not homo sapiens but pan narrans, the storytelling chimpanzee, who tells himself he is homo sapiens. "I know we can't be thinking man, because thinking man wouldn't use the sea as a source of food and as a latrine."
IF HUMANITY is in question, Pratchett's fans are not, though he is staggered "how people think the writer's time is infinitely flexible". Interviews, tours, interviews, awards, fan mail, sorting out travel, negotiating theatrical versions of his work, talking to agents – they all take away from what people really want: the writing.
The nature of fans has changed, he says. "Once upon a time, to judge by the T-shirts, it was all kids and students. Now it's families, led by grannies sometimes."
Discworld has been around now since 1983, and the kids in Discworld families are usually incredibly bright, he says, because it's a family that reads books. "They always remind me of the Midwich Cuckoos [supersmart alien child interlopers from a 1950s sci-fi novel] – bright as buttons. They'll take over the world, I tell you."
His fans have become useful in another way. He occasionally now uses the internet when he can't remember the details of one of his characters. "No problem! Just look him up on Wiki[pedia], and some dedicated fan will have written down everything I have ever said about that character.
"Well done, good lad!"
We move on to the subject of assisted death. He believes attention has focused on him because he gave the Dimbleby lecture last year, in which he talked about what his dad had said to him.
"`If all that's left for me is lying there with pipes and tubes in, I want them to switch me off.' I don't know for whose benefit that artificially extended and crippled life is, if it is not for the benefit of the person who said, `actually I want to die'. There is something rather bad-smelling about it at that point.
"My attitude is that there are some diseases we cannot cure. They can be debilitating and extremely unpleasant. If the person with such a disease wishes to die rather than spend X number of years bed-bound... difficulties, debilitating, uncomfortable, undignified, it seems to me a no-brainer – it's their life."
In Holland, Belgium and Switzerland, the medical profession got behind the right to die lobby, with obvious provisos such as you being compos mentis – no one wants it to be "an excuse to bump off granny".
But still the only game in town for those in other countries is going to Dignitas in Switzerland, Pratchett says. "I'm really talking about death as the ultimate medical procedure."
He is particularly scathing about the journalistic idea of balance around such subjects, the idea that even though the majority in many countries support assisted suicide for the terminally ill, a reporter must get a matching comment from what is called in the UK the Care Not Killing lobby. They say it will mean death squads. How do we get from tribunals to gas chambers in a democracy, he asks.
"It's really very simple 'cause the Dutch have done it." You protect the innocent by having a tribunal of sensible people – judges, coroners, "people who know about people" – and ensure, say, a three-month "cooling off period".
As a married man, he hopes the person would have serious talks with his or her spouse first. Spouses often take the weight of care for dementia sufferers and they are sometimes the lucky ones – the disease can break up families.
"There is a right to life, but the two rights can coexist. I would be very worried if a 25-year-old man who had trouble getting a girlfriend wanted help to commit suicide. You could probably tell him to frequent discos with low lighting and try a new aftershave."
HE IS dismissive of medical Pollyannas. "You still hear idiotic people in America say that people born now need never die. You think really? I don't think it's really going to be as simple as that."
He will write to the end, he says. "I shall go on until I can't write any more. I can't imagine doing anything else."
When the time comes – and he has been told it could be a decade before the full symptoms of dementia appear – he is "going to fight like hell" to have it happen in the UK. "And get some books written. I do other things than be ill."
His tone turns mischief-maker again. "And then I think go on a skiing holiday."
I ask if he is optimistic about treatment and even a cure for those who will suffer Alzheimer's in the future. "I'm not as optimistic as once I was. We met a gentleman called Charles Duffy who's an expert on PCA in Rochester, New York, a couple of years ago. He said he didn't think they could ever cure Alzheimer's. Ultimately, to cure Alzheimer's outright you'd have to actually kill death. To make people immortal," he says.
"There is lots of silliness from the religious lobby and... there's a mouse running around; now I either fetch the cat or I let it go. Sorry, we're talking about the right to die – I'll let this mouse off for the moment."
When he gets to New Zealand he will be 63, he says, and during the tour he will be taking more time for himself and Lyn. For the past three or four decades it has been thus: Write book, UK tour, Australasian tour, US tour, time to write next book.
"Lyn and I used to go to Oz an awful lot." Last time they ended up at Uluru on a fateful day in 2001 – September 11. "Somehow that just put us off holidays."
They are going to take time off after the tour, spend some time with friends in Australia, mainly Queensland. "You can just chill out, and heaven knows I could do with some chilling out."
Then the rodent reappears.
"That bloody mouse is running up and down. I think we'd better get Patch in – is she outside Rob? Look at the bugger! Gaa, gaw, oi! Oh Lord!"
Terry Pratchett talks about living and writing with the 'Rolls-Royce of Alzheimer's' – and why he's far from done yet.
TERRY PRATCHETT is trying to catch a mouse.
"Right down there, the bugger!" he urges Rob, his assistant. "Oh!" he yelps, "I'm going to get him chucked out."
We'd been on the phone for most of an hour, and before the rodent scampered into view Pratchett had been explaining why assisted deaths for the terminally ill will eventually become widely accepted.
"It will happen because people die. Generations die. Once upon a time, and well within my lifetime, [some thought] homosexuals, ooh what nasty people. Now they are all over the bloody place." A comic writer's pause. "And jolly good job too!" You're stuffed if you're in the entertainment industry and don't like gays, he says, in his breathy, slightly pinched voice, the pronunciation something like David Bellamy's, in which the "r" in "very" and "round" sometimes approaches a "w".
"When I was a boy, people still got hanged. What happens is the next generation looks down at the stupidity of the last few generations and says, `You're bloody stupid, how can you possibly sit still for that?"'
What we are sitting still for, he says, is prolonging our lives in the face of needless pain, patchy old-age care and being told we have to hang around "because God wants you to". There's a punitive feeling to the whole thing, he says, as if we were atoning for something. "Not really, I just got Alzheimer's."
There we have it.
The author of the 36-strong Discworld fantasy series, as every single reader of the 45 million books produced with his name on knows, made public in 2007 that he had been diagnosed with a rare form of early-onset Alzheimer's disease called posterior cortical atrophy (PCA). Areas at the back of the brain slowly shrivel. In 2011 Pratchett's short-term memory and language skills are unaffected; not once does he lose his train of thought as we talk about his illness, writing, the future of books, climate change and a dozen other things. It does mean, however, that he now has to dictate his stories into a computer, and he can no longer read with ease. "I have to go and find the next line." Things like door knobs must be examined to figure out what they are for. "You have to think about stuff."
Still, he's an optimist. "It's been put to me as the Rolls-Royce of Alzheimer's. It feels more like a Bentley." Then his humorist's brain gives way to his scientist's. "All dementias end up in pretty much the same way. The paths may be different."
Ad Feedback
SIR TERENCE David John Pratchett OBE, to address him as the Queen might, was born in April of 1948 in Buckinghamshire, a county immediately northwest of London. The only child of David and Eileen, he became a journalist and then PR man (for a nuclear power plant) before settling into writing fantasy fiction. He and his wife, Lyn, now live in Salisbury in south-west England, home to Stonehenge.
He has written books other than about Discworld, including some sci-fi at the beginning of his career, but he accepts his fantasy label – with resignation. "If I wrote a book set in Tombstone, Arizona, with Doc Holliday, Wyatt Earp, the Clancy Boys – and one lousy dragon – they would call it fantasy."
His reluctance seems to stem from the feeling that – despite his devoted hordes, sales only put into shadow by JK Rowling, his eight honorary doctorates and a fat swag of awards – fantasy is not taken seriously in the literary world.
Discworld, a civilisation populated by witches, dwarves, gnomes and trolls among others, exists on a large disc resting on the backs of four giant elephants supported by a giant turtle called Great A'Tuin as it swims through space. The books are littered with humorous footnotes. Death, a frequent presence who rides a horse called Binky, transmits his thoughts to people telepathically. But the novels tackle the biggest questions in the real world, war, religion, politics, philosophy, the financial world, and satirise their stupid aspects. I ventriloquise the thoughts of one avid fan in wondering if he is driven by anger at the misuse of power.
"Could be. I never really think of it like that. I don't set out with an agenda." He quotes his character Granny Weatherwax, a witch. "Evil begins when you start treating other people as things." Does he get angry with the world? "Every day. It's part of being in your 60s. You look at the paper and think, how can people be so fecking dumb? Actually I was a grumpy young man. Terrifically grumpy." He adds a footnote. "To be a grumpy old man properly you've got to have a sense of humour to the grumpiness."
PRATCHETT HAS some right to be grumpy.
PCA ensures he can no longer write the 400 words a day he used to, and he had to train the dictation software to cope with his wide vocabulary. "An author has everybody's vocabulary," he notes. "The one that was funniest was the word `arsehole', which regrettably wasn't in its vocabulary. One of those little chores that makes the day slightly more interesting."
Once a keen signer, he now finds it too difficult to write dedications when signing books, and will stamp his name during his trip to New Zealand and Australia.
He was also a great reader. As we speak, he walks into his library, admiring his oldest tomes – "ones where two cows had to die to put a lovely leather sheen on to the book" – and his huge collection of dictionaries, including a two-volume set of Victorian slang. "That's where I got half my reference material – little corners of history that you never heard about – that I thought, crikey, I can make a story about this."
He loves everything about books – their heft, their smell – but he also likes e-books. Almanacs would make perfect e-books, he says, and wonders why all newspapers, demanding trees be felled and oil for transportation, aren't electronic.
But he thinks we have to pay attention to how we store words. A lot of books may not be read for years, but they should not be thrown away. "There are skills which are dying out because no one needs that skill any more, but one day someone will need that skill and there is going to be no one to teach it, unless someone has written down, `this is how you can do this'. If the climate changes so much that our entire way of life has to change, possibly going back to a slightly more simpler one, there are a whole lot of techniques that we have lost because generations of farmers and artisans have been displaced by machinery."
Is he optimistic about us pushing back climate change?
"No, I'm not, because we are too fff..., too bloody dumb." He did a series of books with scientists called The Science of Discworld, and came to the conclusion that earth's humanity is not homo sapiens but pan narrans, the storytelling chimpanzee, who tells himself he is homo sapiens. "I know we can't be thinking man, because thinking man wouldn't use the sea as a source of food and as a latrine."
IF HUMANITY is in question, Pratchett's fans are not, though he is staggered "how people think the writer's time is infinitely flexible". Interviews, tours, interviews, awards, fan mail, sorting out travel, negotiating theatrical versions of his work, talking to agents – they all take away from what people really want: the writing.
The nature of fans has changed, he says. "Once upon a time, to judge by the T-shirts, it was all kids and students. Now it's families, led by grannies sometimes."
Discworld has been around now since 1983, and the kids in Discworld families are usually incredibly bright, he says, because it's a family that reads books. "They always remind me of the Midwich Cuckoos [supersmart alien child interlopers from a 1950s sci-fi novel] – bright as buttons. They'll take over the world, I tell you."
His fans have become useful in another way. He occasionally now uses the internet when he can't remember the details of one of his characters. "No problem! Just look him up on Wiki[pedia], and some dedicated fan will have written down everything I have ever said about that character.
"Well done, good lad!"
We move on to the subject of assisted death. He believes attention has focused on him because he gave the Dimbleby lecture last year, in which he talked about what his dad had said to him.
"`If all that's left for me is lying there with pipes and tubes in, I want them to switch me off.' I don't know for whose benefit that artificially extended and crippled life is, if it is not for the benefit of the person who said, `actually I want to die'. There is something rather bad-smelling about it at that point.
"My attitude is that there are some diseases we cannot cure. They can be debilitating and extremely unpleasant. If the person with such a disease wishes to die rather than spend X number of years bed-bound... difficulties, debilitating, uncomfortable, undignified, it seems to me a no-brainer – it's their life."
In Holland, Belgium and Switzerland, the medical profession got behind the right to die lobby, with obvious provisos such as you being compos mentis – no one wants it to be "an excuse to bump off granny".
But still the only game in town for those in other countries is going to Dignitas in Switzerland, Pratchett says. "I'm really talking about death as the ultimate medical procedure."
He is particularly scathing about the journalistic idea of balance around such subjects, the idea that even though the majority in many countries support assisted suicide for the terminally ill, a reporter must get a matching comment from what is called in the UK the Care Not Killing lobby. They say it will mean death squads. How do we get from tribunals to gas chambers in a democracy, he asks.
"It's really very simple 'cause the Dutch have done it." You protect the innocent by having a tribunal of sensible people – judges, coroners, "people who know about people" – and ensure, say, a three-month "cooling off period".
As a married man, he hopes the person would have serious talks with his or her spouse first. Spouses often take the weight of care for dementia sufferers and they are sometimes the lucky ones – the disease can break up families.
"There is a right to life, but the two rights can coexist. I would be very worried if a 25-year-old man who had trouble getting a girlfriend wanted help to commit suicide. You could probably tell him to frequent discos with low lighting and try a new aftershave."
HE IS dismissive of medical Pollyannas. "You still hear idiotic people in America say that people born now need never die. You think really? I don't think it's really going to be as simple as that."
He will write to the end, he says. "I shall go on until I can't write any more. I can't imagine doing anything else."
When the time comes – and he has been told it could be a decade before the full symptoms of dementia appear – he is "going to fight like hell" to have it happen in the UK. "And get some books written. I do other things than be ill."
His tone turns mischief-maker again. "And then I think go on a skiing holiday."
I ask if he is optimistic about treatment and even a cure for those who will suffer Alzheimer's in the future. "I'm not as optimistic as once I was. We met a gentleman called Charles Duffy who's an expert on PCA in Rochester, New York, a couple of years ago. He said he didn't think they could ever cure Alzheimer's. Ultimately, to cure Alzheimer's outright you'd have to actually kill death. To make people immortal," he says.
"There is lots of silliness from the religious lobby and... there's a mouse running around; now I either fetch the cat or I let it go. Sorry, we're talking about the right to die – I'll let this mouse off for the moment."
When he gets to New Zealand he will be 63, he says, and during the tour he will be taking more time for himself and Lyn. For the past three or four decades it has been thus: Write book, UK tour, Australasian tour, US tour, time to write next book.
"Lyn and I used to go to Oz an awful lot." Last time they ended up at Uluru on a fateful day in 2001 – September 11. "Somehow that just put us off holidays."
They are going to take time off after the tour, spend some time with friends in Australia, mainly Queensland. "You can just chill out, and heaven knows I could do with some chilling out."
Then the rodent reappears.
"That bloody mouse is running up and down. I think we'd better get Patch in – is she outside Rob? Look at the bugger! Gaa, gaw, oi! Oh Lord!"
http://www.stuff.co.nz/sunday-star-times/features/4866014/A-fantastic-voyage
I see the Dutch get a mention too 
