'The best thing I ever did was stand up and say I have Alzheimer's': Terry Pratchett speaks to Fiona Phillips
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Since Terry first said he had the disease in 2007 I had always wanted to meet him and he, apparently, was keen to see me
On my way to interview Sir Terry Pratchett I tweeted about our meeting.
The responses ranged from: âHow amazing! Heâs a fabulous writer and totally awe-inspiring personâ, to âI hope you find him as well as can be expectedâ and âYou and he are both doing so much for dementiaâ.
And thatâs why we were meeting. To discuss his life now that it includes being the highest profile campaigner for Alzheimerâs while actually living with the disease.
The Discworld author first said he had it in December 2007, just over a year after Iâd lost my mum Amy to early-onset Alzheimerâs.
It was a particularly bleak period as we were told that my dad Neville also had it.
Until then, Iâd felt a bit of a voice in the wilderness, going on about the lack of understanding and good care.
Terryâs honesty was a eureka moment for me. Since then I had always wanted to meet him and he, apparently, was keen to see me.
But it didnât seem that way when I introduced myself and went to shake his hand.
Dressed from head-to-toe in his trademark black, a top hat and frock coat, he looked like an authoritarian Dickensian charÂÂacter from his Oliver Twist-inspired novel Dodger.
When he didnât offer his hand back my heart sank a little.
âHe canât see your hand,â his book publicist Lynsey explained.
Terry, 64, has a form of early-onset Alzheimerâs called PCA (Partial Cortical Atrophy) which affects the part of the brain responsible for visual signals.
As we sit down he reaches to fiddle with my phone, trying to make out what it is.
When I explain it is recording our conversation, he cheekily says âamateur!â
Terryâs twinkly-eyed humour made me, by contrast, recall my mumâs constant tears and depression.
âIt surprises me. It surprises my specialist,â he tells me.
He has written eight books since his diagnosis and his doctor has told him he has âTerry Pratchettâs PCA, which isnât like anyone elseâs PCA.â
He can no longer use a keyboard but, instead, has a program which enables him to talk to his computer.
So, how else has his illness affected him?
âWords escaping just about the time youâre going to say something. Youâve got it lined up and suddenly it just slips away,â he says.
His words are very considered, his answers long and drawn out.
If he forgets a word thereâs a silence as he cogitates, before returning to the point where he left off and continuing the anecdote.
I try not to ask too many questions so as not to interrupt his thoughts. You can almost hear the determination to hang on to facts and to maintain his fluency.
I ask him if he has trouble getting dressed, which is one of the first signs that a person may have cognitive difficulties and we joke about the fact that being dressed all in black makes it pretty hard to screw up.
âYouâll notice,â he adds naughtily, âthat my hat is not on upside down.â
I note that his pants arenât on his head either, which was sometimes the case with my dad.
âWell, pants are pants on the whole,â he chuckles, âand itâs not particularly easy to get them on back to front.â
As with most of us, Terry finds that a routine helps maintain his daily existence.
âI get up, pop my pills,â he says, referring to Aricept and Ebixa which can, in some cases, temporarily arrest the progress of Alzheimerâs.
Heâs been paying for the drugs since he was diagnosed in his late 50s because you have to be 65 to get them free.
âIâve got money, so I donât notice,â he remarks, âbut it annoys me.â
Does he appreciate that his experience of Alzheimerâs is a more privileged one than most?
âOh, absolutely,â he says before mulling over the fact heâs still âfit for purpose if that purpose is to spend most of the day writing books.â
His books have sold more than 70 million copies and Terry is now almost as well known for talking honestly about living with Alzheimerâs but says: âI donât like to be an icon in this matter because there are people far, far worse off.â
Then he says something astonishing: âI think the best thing I ever did with my life was stand up and say Iâve got Alzheimerâs.â
Terry, who married Lynne 44 years ago and has a 36-year-old writer daughter Rhianna, tells me that as a young journalist he was told never to use the word cancer, âas people were sensitiveâ.
The first time he heard it used was when broadcaster Richard Dimbleby died in 1965.
âAnd at last it seemed as though someone had opened a window and people were talking about it and so...â
At this point he loses his train of thought, concentrates, says: âIâm tripping over myself.â
Gathering his thoughts Terry adds: âLet me go back to the beginning of the sentence. I get all my clauses in the wrong place.â
He goes on to explain that once he was diagnosed it was almost as if heâd been told: âOK, youâve got it, now go home and get on with it.â
I tell him the same thing happened to my parents.
Terry says: âIf it was cancer it would be sorted. But with this you and your spouse are left in the lurchâ.
It was then he decided to âtell everybodyâ about his Alzheimerâs.
He says he knows âa couple of well-known peopleâ who have the disease âand arenât sayingâ and heâs told them they could do so much good by opening up.
Mind you, his time hasnât been his own since sharing his diagnosis.
âPeople come up to me in the street and tell me about their mum, their granny.
"One time, in Salisbury, a big lorry screeched to a halt and the man was in tears, talking about his mum.â
I wonder how Lynne, the spouse âleft in the lurchâ, is coping with the changes.
Terry says: âHmmm, whatâs the average day? Two cups of tea in bed, talking about stuff, me going down into my bathroom, do the pills... go and pick up pants.
âLynneâs quite methodical about where stuffâs left. I know where to find the clean stuff and I put the dirty stuff in the other bag.
"Then I go down, open up the chicken coop and feed them, then I open up the chapel which is where I work... go for a walk... and thatâs it.â
Does he ever get depressed? âNo, my father was a stoic,â he replies before asking about my father.
I tell him he was killed by the overuse of drugs for his Alzheimerâs. âAh, so that was murder,â he exclaims.
Then Terry expands, moving on to assisted dying. âMy dad said to me when he knew he was dying... âif you ever see me just lying there with pipes and tubes, tell them to shut me downâ.
âHe was in a nice hospice but my mother had to watch him more or less start looking like an Egyptian mummy.
"The nurses were filling him with morphine, so that is an assisted death in the first place, so why go through all that s***e?â
He tells me he has Tony Nicklinsonâs picture in his writing room and is furious that âhe had to starve himself to deathâ instead of being allowed the right to die.
âIf someone is compos mentis and his plea to die is witnessed by two doctors, how can an assisted death like that be murder?â
So, does Terry have an end-of-life plan? âYes, I plan to die... itâs all the rage,â he cheekily retorts.
âI have a living will and I have friends, and I have money and I have hope.
âThere are things around and I know where they can be got quite easily but I quite like waking up to the sunshine.
"I donât think about the end game. Iâve got lots to occupy my mind. Itâs the rage that keeps me going.â
And long may he rage against the dying of the light. I, for one, will always hold a candle to him.
Terry Pratchett's latest book, A Blink of the Screen: Collected Shorter Fiction, is available now.
http://www.mirror.co.uk/news/uk-news/terry-pratchett-speaks-to-fiona-phillips-1434665
