Dr Peter Scott-Morgan describes how, against all odds, his life is filled with joy

The most extraordinary thing about scientist Dr Peter Scott-Morgan, aside from his optimism, is his relentless capacity for joy.

Except for his eyes and a few facial muscles, he cannot move. Neither can he breathe unaided. His sense of smell and taste have deserted him. 

He can only speak haltingly, through a voice synthesiser.

A year after doctors had expected him to be dead from motor neurone disease (MND), he is kept alive by high-tech wizardry. 

Yet his brilliant mind, trapped in his inert body, is constantly active, questing, seeking pioneering solutions to improve his life and those of others with extreme disability.

The most extraordinary thing about scientist Dr Peter Scott-Morgan, aside from his optimism, is his relentless capacity for joy. Except for his eyes and a few facial muscles, he cannot move. He is pictured above with partner Francis

The most extraordinary thing about scientist Dr Peter Scott-Morgan, aside from his optimism, is his relentless capacity for joy. Except for his eyes and a few facial muscles, he cannot move. He is pictured above with partner Francis

The most extraordinary thing about scientist Dr Peter Scott-Morgan, aside from his optimism, is his relentless capacity for joy. Except for his eyes and a few facial muscles, he cannot move. He is pictured above with partner Francis

You may imagine this combination of sharpened mental awareness coupled with physical paralysis would be hell. Yet his smile still dazzles and he wakes each morning buoyant with hope and resolve.

Does he miss his old life of activity, spontaneity and impromptu conversation? Incredibly, he does not.

‘I know this is going to sound ridiculous,’ he tells me. ‘Or delusional. Or a lie. But I don’t miss very much at all. Any more than I missed being a kid when I became a teenager. I’m looking forward.

‘I have love. I have dreams. I have purpose. Oh, and I’m still alive. I mean really alive. Not just one of the living dead. Not just surviving.

‘I’m THRIVING!’

Note that the triumphant capitals of the last word are Peter’s own. (He is using his eyes laboriously to type answers to my questions via a sight-activated keyboard.)

‘Days may pass when I never once remember that in the past I could walk or move or (absurdly) even that I could talk,’ he tells me.

‘My brain has its own ‘new normal’. Instead of feeling like one of the living dead, I feel fully alive, excited. I’m really looking forward to the future. I’m having fun!

Does he miss his old life of activity, spontaneity and impromptu conversation? Incredibly, he does not. 'I know this is going to sound ridiculous,' he tells me. 'Or delusional. Or a lie. But I don't miss very much at all. Any more than I missed being a kid when I became a teenager. I'm looking forward'

Does he miss his old life of activity, spontaneity and impromptu conversation? Incredibly, he does not. 'I know this is going to sound ridiculous,' he tells me. 'Or delusional. Or a lie. But I don't miss very much at all. Any more than I missed being a kid when I became a teenager. I'm looking forward'

Does he miss his old life of activity, spontaneity and impromptu conversation? Incredibly, he does not. ‘I know this is going to sound ridiculous,’ he tells me. ‘Or delusional. Or a lie. But I don’t miss very much at all. Any more than I missed being a kid when I became a teenager. I’m looking forward’

‘Eighteen months after the last words ever to pass my lips, I actually feel amazing, which is a bit of a surprise.

‘I’d expected being almost locked-in would feel a little traumatic. In reality though, I get to sit around a lot while people pamper me. Think of the lifestyle of a sedentary pharaoh and you won’t go far wrong. It’s rather relaxing.

‘I suspect the trick to enjoying paralysis is simply to imagine you’re in a luxury spa hotel and the maitre d’ insists you put your feet up and don’t move a muscle.’

His mischievous sense of humour is, remarkably, intact. And his uplifting philosophy is to focus on a future potent with bold new breakthroughs in technology that will transform his life and set a template for others disabled by old age or illness in the future.

It is five years since Peter was diagnosed with MND — a condition that progressively damages the nervous system, often leading to paralysis and an inability to speak, swallow and breathe. Ninety per cent of those diagnosed with it die within five years, often of suffocation or starvation.

But as Peter, 62, describes in his extraordinary memoir — serialised last week in the Mail — his reaction to the prognosis, after the initial jolt of shock, was defiant. He had no intention of dying. His radical aim was to defy death by turning himself into the world’s first cyborg: part man, part machine.

Serendipitously, he has a PhD in Robotics — a qualification that could not have prepared him more appropriately for his role as a human guinea pig expanding the frontiers of science.

When I meet him and his husband Francis, 65, over Zoom at the home they share in Torquay, Devon (they have been together for 42 years), I am struck by their love for each other; their gentle, joshing affection and their conviction that this mutual devotion is unshakeable.

‘Shortly after we met, I would willingly have died for Francis,’ Peter tells me in his cyborg voice, which has been modulated by world-leading voice synthesisers to sound exactly like his own. ‘Now I realise that I will willingly live for him, whatever the cost.

‘Francis demonstrates every day that he loves me more than ever. I am the luckiest person on the planet.’

Francis adds that he fell in love with Peter’s brain (as well as his dazzling smile and long legs), and the attraction remains undimmed.

‘He is still the same Peter. His body has changed but his brain, like a fine wine, gets better with age. And his strength and bravery, the way he’s dealt with his condition, as well as his kindness — they’re all intact.

‘I can ask him anything: how far we’re away from the Moon and he’ll know to the nearest inch. But he could never make a cup of tea. He’s never known where the kitchen is.

‘So we complement each other. He’s always been able to lose himself for hours on his computer, while I’ve only just mastered the TV remote control. But the difference now is that I can just plug him in so he can be fed and watered while he’s working.’

He smiles fondly at Peter, whose stomach has been re-plumbed so nutrients are piped directly through a tube into his intestine. He breathes through a tube at the base of his throat so he will not risk suffocation because he cannot swallow.

It is hard to grasp the sheer scale of the technology which is prolonging his productive and happy life. He and Francis envisage they could have 20 more years together.

Peter shows me the avatar of his face which he’ll wear on his chest and which will speak in his voice and express emotion, through movement and tone, when his own face is less mobile.

The avatar is preternaturally youthful, with a shock of fair hair. (Peter dyes his own to match it and will continue to do so.) He refers to the avatar as Peter 2.0 — which is also the title of his book — and he tells me it is constantly being refined.

As Peter, 62, describes in his extraordinary memoir — serialised last week in the Mail — his reaction to the prognosis, after the initial jolt of shock, was defiant. He had no intention of dying. His radical aim was to defy death by turning himself into the world's first cyborg: part man, part machine

As Peter, 62, describes in his extraordinary memoir — serialised last week in the Mail — his reaction to the prognosis, after the initial jolt of shock, was defiant. He had no intention of dying. His radical aim was to defy death by turning himself into the world's first cyborg: part man, part machine

As Peter, 62, describes in his extraordinary memoir — serialised last week in the Mail — his reaction to the prognosis, after the initial jolt of shock, was defiant. He had no intention of dying. His radical aim was to defy death by turning himself into the world’s first cyborg: part man, part machine

‘My avatar and my voice are significantly better than they were a year ago. They’ll keep improving so that eventually the avatar will be indistinguishable from the original me just before MND began turning me into Skeletor. My Peter 2.0 persona will never age. My powers will double every two years. I’ll be 1,000 times more powerful by the time I’m 80.’

The thought is boggling. When Peter lists the super-human capacities he — as a disabled man — already possesses, it is impossible not to be overawed.

The very epithet ‘disabled’ already sounds like a misnomer; an anachronism.

‘Thanks to pioneering research, I’m transitioning to become an alternative version of my old self. This is a renaissance. A rebirth,’ he explains. ‘I’m not so much disabled (although I’m fiercely proud to be called that) as trans-abled. I’m absolutely not ‘handicapped’.

‘For instance, I can eat and drink while I’m asleep. I never need to get up in the night to have a pee. Indeed I haven’t gone to the loo for years.

‘But I’m hydrated 24/7. I can breathe perfectly well with a wet flannel pressed over my mouth and nose. The common cold can’t take hold and can never spread to my chest. And I can talk clearly with my mouth shut [via his avatar] in potentially any language.’

He can sing, too, as Peter 2.0, with a larger range than any professional. He is excited that ‘geniuses’ at the Edinburgh company CereProc are trying to get his cloned voice to sing Rise Like A Phoenix. (The drag queen Conchita Wurst sang this at the Eurovision Song Contest in 2014.)

It’s exciting, he says, not just because of the relevance of the lyrics, but also because he will be moving into the magical realms of cyborg programming.

As original Peter, even though he was a reasonable singer, he couldn’t have done justice to the song. Peter 2.0, his voice enhanced by artificial intelligence (AI), will be able to achieve what he could never have done alone.

Peter 2.0 is also narrating the first and last few pages of his audiobook — and the extracts show emotion and subtleties that used to be uniquely the preserve of the human voice.

Consider the staccato, robotic speech of Professor Stephen Hawking, who also had MND, and you have an idea of how far technology has advanced.

Considering the ambition of the cloned voice project, there have been few glitches with it. However, it operates like a sophisticated form of predictive text and occasionally there have been comic errors.

Peter remembers a conversation with a friend, Jerry Overton, who he calls the AI Wizard.

‘I’d never set out to call him a jerk and have never once typed the word,’ he explains. 

‘But I’ve only to type ‘je’ [he does so, you’ll recall, by scanning a keyboard with his eyes] and the AI triumphantly inserts the word ‘jerk’ into my sentence.’

Although Peter repeatedly corrects it, the AI will not allow it to be changed.

So when one day, on a video call, Jerry made an audaciously clever proposal and awaited Peter’s verdict, his synthetic voice concluded: ‘You’re an incredible jerk’ instead of ‘You’re incredible Jerry!’ (Luckily, Jerry was not affronted.)

As we chat, Peter and Francis sit in the book-lined study of their seaside home with their nephew, Andrew, at their side. Six years ago, when symptoms of Peter’s MND were beginning to show, Army veteran Andrew gave up his career hosting VIPs flying into Exeter airport to become his personal assistant.

‘And today he is as adept at changing my website as my colostomy bag,’ says Peter.

Neither is Francis squeamish about dealing with the in-and-out tubes that have become part of his husband’s life.

‘I’m trained to change the tubes into Peter’s throat and bladder. I’m not fazed at all,’ he says brightly.

I wonder whether MND and its attendant clinical rituals has put paid to Peter and Francis’s intimate relationship?

‘Although I’m sorely tempted to give a full-bore X-rated answer to this, I suspect many of your readers are sufficiently young that they’d find even the thought of anyone in their 60s having an intimate/physical life together distinctly yucky!’ Peter parries. (So we’ll take that as affirmation that they’re still intimate then.) What strikes me forcibly about the Scott-Morgans is that their plans for the future, far from being curtailed by Peter’s condition, are expanding ambitiously.

Currently Andrew (‘the closest we have to a son’, they both agree), his partner Laura and their boys Ollie, five, and Eddie, two, live next door.

But so thrilled are they all by this proximity, Peter and Francis have bought a clifftop site where they plan to build a house — they’ve already named it Highcliff — big enough to accommodate all three generations.

Naturally, it will be bristling with trail-blazing high-tech; all the family will be catered for by ‘an ever-resourceful cybernetic Jeeves’, says Peter. And as he and Francis discuss their plans, envisaging how AI will enhance all their futures, you sense they are bursting with excitement.

‘The most amazing feeling, my greatest cause of unrelenting optimism, is that thanks to the explosive growth in computing power, every couple of years that I cheat death, my ability to enjoy life thanks to high-tech will double. That’s a thousand times the power by 2040!’ Peter exclaims.

So committed is he to viewing the glass as half full, that he spots blessings in disguise around every corner. He even regards his inability to savour the food he once loved as a new opportunity.

‘I was brought up to believe that it was uncouth to speak with my mouth full, and eating always felt a bit of a missed opportunity for a natter,’ he says. ‘Not for much longer! As my pump surreptitiously feeds me, I’ll be holding court to my captive audience. Who do you feel sorry for now?’

I wonder, was there ever a time when he and Francis railed against MND, wept about the arbitrary injustice of life? 

Peter cites just one single time when, stressed and exhausted, Francis snapped, ‘Don’t make me resent you and your f***ing MND more than I already do.’

But this isolated moment of desolation and anger passed. Within minutes, they were clinging to each other, sobbing convulsively and resolving to pull themselves together and get through it. As always.

Their story is as much an age-old one about the enduring power of love as it is a futuristic one about Peter’s transformation into a cyborg.

And, as ever, he ends with a silver lining; an upside to the misery of MND.

‘Because I contracted it, Francis and I now have a chance to do something extraordinarily useful. Impactful. Worthwhile.

‘Without MND we’d have enjoyed ourselves but achieved little. With MND — bizarrely, totally unexpectedly, magically — we may be able to help rewrite the future of what it means to be disabled. How do you weigh a trade-off as gargantuan as that?’

Peter 2.0: The Human Cyborg by Peter Scott-Morgan (Michael Joseph, £16.99). © 2021 Peter Scott-Morgan. To order a copy for £14.95 (offer valid until April 4, 2021, UK p&p free on orders over £20), go to mailshop.co.uk/books or call 020 3308 9193.

link

(Visited 117 times, 1 visits today)

Leave a Reply