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Tuesday, June 15, 2021

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

The most extraordinary factor about scientist Dr Peter Scott-Morgan, apart from his optimism, is his relentless capability for joy.

Except for his eyes and some facial muscle tissues, he can’t transfer. Neither can he breathe unaided. His sense of odor and style have abandoned him. 

He can solely converse haltingly, via a voice synthesiser.

A year after medical doctors had anticipated him to be useless from motor neurone illness (MND), he is stored alive by high-tech wizardry. 

Yet his good thoughts, trapped in his inert physique, is consistently lively, questing, searching for pioneering options to enhance his life and people of others with excessive incapacity.

The most extraordinary factor about scientist Dr Peter Scott-Morgan, apart from his optimism, is his relentless capability for joy. Except for his eyes and some facial muscle tissues, he can’t transfer. He is pictured above with accomplice Francis

You could think about this mixture of sharpened psychological consciousness coupled with bodily paralysis can be hell. Yet his smile nonetheless dazzles and he wakes every morning buoyant with hope and resolve.

Does he miss his outdated life of exercise, spontaneity and impromptu dialog? Incredibly, he doesn’t.

‘I do know this is going to sound ridiculous,’ he tells me. ‘Or delusional. Or a lie. But I do not miss very a lot at all. Any greater than I missed being a child once I grew to become an adolescent. I’m wanting ahead.

‘I’ve love. I’ve desires. I’ve function. Oh, and I’m nonetheless alive. I imply actually alive. Not simply one of many dwelling useless. Not simply surviving.

‘I’m THRIVING!’

Note that the triumphant capitals of the final phrase are Peter’s personal. (He is utilizing his eyes laboriously to kind solutions to my questions through a sight-activated keyboard.)

‘Days could go once I by no means as soon as keep in mind that previously I may stroll or transfer or (absurdly) even that I may discuss,’ he tells me.

‘My brain has its personal ‘new regular’. Instead of feeling like one of many dwelling useless, I really feel totally alive, excited. I’m actually wanting ahead to the longer term. I’m having enjoyable!

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 outdated life of exercise, spontaneity and impromptu dialog? Incredibly, he doesn’t. ‘I do know this is going to sound ridiculous,’ he tells me. ‘Or delusional. Or a lie. But I do not miss very a lot at all. Any greater than I missed being a child once I grew to become an adolescent. I’m wanting ahead’

‘Eighteen months after the final phrases ever to go my lips, I really really feel wonderful, which is a little bit of a shock.

‘I’d anticipated being virtually locked-in would really feel slightly traumatic. In actuality although, I get to take a seat round rather a lot whereas folks pamper me. Think of the approach to life of a sedentary pharaoh and you will not go far improper. It’s slightly stress-free.

‘I believe the trick to having fun with paralysis is merely to think about you are in a luxurious spa resort and the maitre d’ insists you place your ft up and do not transfer a muscle.’

His mischievous sense of humour is, remarkably, intact. And his uplifting philosophy is to deal with a future potent with daring new breakthroughs in know-how that may rework his life and set a template for others disabled by outdated age or sickness sooner or later.

It is 5 years since Peter was recognized with MND — a situation that progressively damages the nervous system, typically resulting in paralysis and an incapacity to talk, swallow and breathe. Ninety per cent of these recognized with it die inside 5 years, typically of suffocation or hunger.

But as Peter, 62, describes in his extraordinary memoir — serialised final week within the Mail — his response to the prognosis, after the preliminary jolt of shock, was defiant. He had no intention of dying. His radical goal was to defy dying by turning himself into the world’s first cyborg: half man, half machine.

Serendipitously, he has a PhD in Robotics — a qualification that would not have ready him extra appropriately for his position as a human guinea pig increasing the frontiers of science.

When I meet him and his husband Francis, 65, over Zoom on the house they share in Torquay, Devon (they’ve been collectively for 42 years), I’m struck by their love for one another; their mild, joshing affection and their conviction that this mutual devotion is unshakeable.

‘Shortly after we met, I might willingly have died for Francis,’ Peter tells me in his cyborg voice, which has been modulated by world-leading voice synthesisers to sound precisely like his personal. ‘Now I realise that I’ll willingly stay for him, no matter the associated fee.

‘Francis demonstrates day-after-day that he loves me greater than ever. I’m the luckiest particular person on the planet.’

Francis provides that he fell in love with Peter’s brain (in addition to his dazzling smile and lengthy legs), and the attraction stays undimmed.

‘He is nonetheless the identical Peter. His physique has modified however his brain, like a effective wine, will get higher with age. And his power and bravado, the best way he is dealt with his situation, in addition to his kindness — they’re all intact.

‘I can ask him something: how far we’re away from the Moon and he’ll know to the closest inch. But he may by no means make a cup of tea. He’s by no means identified the place the kitchen is.

‘So we complement one another. He’s at all times been capable of lose himself for hours on his computer, whereas I’ve solely simply mastered the TV distant management. But the distinction now is that I can simply plug him in so he might be fed and watered whereas he is working.’

He smiles fondly at Peter, whose abdomen has been re-plumbed so vitamins are piped instantly via a tube into his gut. He breathes via a tube on the base of his throat so he is not going to danger suffocation as a result of he can’t swallow.

It is arduous to know the sheer scale of the know-how which is prolonging his productive and joyful life. He and Francis envisage they might have 20 extra years collectively.

Peter exhibits me the avatar of his face which he’ll put on on his chest and which is able to converse in his voice and specific emotion, via motion and tone, when his personal face is much less cell.

The avatar is preternaturally youthful, with a shock of truthful hair. (Peter dyes his personal to match it and can proceed to take action.) He refers back to the avatar as Peter 2.0 — which is additionally the title of his ebook — and he tells me it is consistently 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 final week within the Mail — his response to the prognosis, after the preliminary jolt of shock, was defiant. He had no intention of dying. His radical goal was to defy dying by turning himself into the world’s first cyborg: half man, half machine

‘My avatar and my voice are considerably higher than they had been a year in the past. They’ll preserve bettering in order that ultimately the avatar shall be indistinguishable from the unique me simply earlier than MND started turning me into Skeletor. My Peter 2.0 persona won’t ever age. My powers will double each two years. I’ll be 1,000 instances extra highly effective by the point I’m 80.’

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

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

‘Thanks to pioneering analysis, I’m transitioning to develop into another model of my outdated self. This is a renaissance. A rebirth,’ he explains. ‘I’m not a lot disabled (though I’m fiercely proud to be referred to as that) as trans-abled. I’m completely not ‘handicapped’.

‘For occasion, I can eat and drink whereas I’m asleep. I by no means must rise up within the night time to have a pee. Indeed I have not gone to the john for years.

‘But I’m hydrated 24/7. I can breathe completely properly with a moist flannel pressed over my mouth and nostril. The frequent chilly cannot take maintain and may by no means unfold to my chest. And I can discuss clearly with my mouth shut [via his avatar] in probably any language.’

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

It’s thrilling, he says, not simply due to the relevance of the lyrics, but additionally as a result of he shall be shifting into the magical realms of cyborg programming.

As authentic Peter, though he was an affordable singer, he could not have achieved justice to the tune. Peter 2.0, his voice enhanced by synthetic intelligence (AI), will be capable of obtain what he may by no means have achieved alone.

Peter 2.0 is additionally narrating the primary and previous couple of pages of his audiobook — and the extracts present emotion and subtleties that was uniquely the protect of the human voice.

Consider the staccato, robotic speech of Professor Stephen Hawking, who additionally had MND, and you’ve got an concept of how far know-how has superior.

Considering the ambition of the cloned voice project, there have been few glitches with it. However, it operates like a complicated type of predictive textual content and infrequently there have been comedian errors.

Peter remembers a dialog with a buddy, Jerry Overton, who he calls the AI Wizard.

‘I’d by no means got down to name him a jerk and have by no means as soon as typed the phrase,’ he explains. 

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

Although Peter repeatedly corrects it, the AI is not going to permit it to be modified.

So when someday, on a video name, Jerry made an audaciously intelligent proposal and awaited Peter’s verdict, his artificial voice concluded: ‘You’re an unimaginable jerk’ as an alternative of ‘You’re unimaginable Jerry!’ (Luckily, Jerry was not affronted.)

As we chat, Peter and Francis sit within the book-lined research of their seaside house with their nephew, Andrew, at their aspect. Six years in the past, when signs of Peter’s MND had been starting to indicate, Army veteran Andrew gave up his career internet hosting VIPs flying into Exeter airport to develop into his personal assistant.

‘And immediately he is as adept at altering my web site as my colostomy bag,’ says Peter.

Neither is Francis squeamish about dealing with the in-and-out tubes which have develop into a part of his husband’s life.

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

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

‘Although I’m sorely tempted to present a full-bore X-rated answer to this, I believe lots of your readers are sufficiently younger that they’d discover even the considered anybody of their 60s having an intimate/bodily life collectively distinctly yucky!’ Peter parries. (So we’ll take that as affirmation that they are nonetheless intimate then.) What strikes me forcibly concerning the Scott-Morgans is that their plans for the longer term, removed from being curtailed by Peter’s situation, are increasing ambitiously.

Currently Andrew (‘the closest we’ve got to a son’, they each agree), his accomplice Laura and their boys Ollie, 5, and Eddie, two, stay subsequent door.

But so thrilled are they all by this proximity, Peter and Francis have purchased a clifftop website the place they plan to build a home — they’ve already named it Highcliff — large enough to accommodate all three generations.

Naturally, it will likely be bristling with trail-blazing high-tech; all the household shall be catered for by ‘an ever-resourceful cybernetic Jeeves’, says Peter. And as he and Francis talk about their plans, envisaging how AI will improve all their futures, you sense they’re bursting with pleasure.

‘The most wonderful feeling, my best reason for unrelenting optimism, is that because of the explosive progress in computing energy, each couple of years that I cheat dying, my skill to take pleasure in life because of high-tech will double. That’s a thousand instances the facility by 2040!’ Peter exclaims.

So dedicated is he to viewing the glass as half full, that he spots blessings in disguise round each nook. He even regards his incapacity to savour the meals he as soon as liked as a brand new alternative.

‘I used to be introduced as much as consider that it was uncouth to talk with my mouth full, and consuming at all times felt a little bit of a missed alternative for a natter,’ he says. ‘Not for for much longer! As my pump surreptitiously feeds me, I’ll be holding court docket to my captive viewers. Who do you are feeling sorry for now?’

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

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

But this remoted second of desolation and anger handed. Within minutes, they had been clinging to one another, sobbing convulsively and resolving to drag themselves collectively and get via it. As at all times.

Their story is as a lot an age-old one concerning the enduring energy of affection because it is a futuristic one about Peter’s transformation right into a cyborg.

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

‘Because I contracted it, Francis and I now have an opportunity to do one thing terribly helpful. Impactful. Worthwhile.

‘Without MND we might have loved ourselves however achieved little. With MND — bizarrely, completely unexpectedly, magically — we might be able to assist rewrite the way forward for 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 replica for £14.95 (provide legitimate till April 4, 2021, UK p&p free on orders over £20), go to mailshop.co.uk/books or name 020 3308 9193.

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