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Dr Peter Scott-Morgan describes how, towards all odds, his life is full of pleasure

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 factor about scientist Dr Peter Scott-Morgan, other than his optimism, is his relentless capability for pleasure.

Aside from his eyes and some facial muscle groups, he can not 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 12 months after medical doctors had anticipated him to be useless from motor neurone illness (MND), he’s stored alive by high-tech wizardry. 

But his sensible thoughts, trapped in his inert physique, is continually lively, questing, in search of pioneering options to enhance his life and people of others with excessive incapacity.

Essentially the most extraordinary factor about scientist Dr Peter Scott-Morgan, other than his optimism, is his relentless capability for pleasure. Aside from his eyes and some facial muscle groups, he can not transfer. He’s pictured above with associate Francis

Chances are you’ll think about this mix of sharpened psychological consciousness coupled with bodily paralysis could be hell. But his smile nonetheless dazzles and he wakes every morning buoyant with hope and resolve.

Does he miss his outdated lifetime of exercise, spontaneity and impromptu dialog?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

‘I do know that is going to sound ridiculous,’ he tells me. ‘Or delusional. Or a lie. However I do not miss very a lot in any respect. Any greater than I missed being a child after I grew to become a youngster. I am wanting ahead.

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

‘I am THRIVING!’

Be aware that the triumphant capitals of the final phrase are Peter’s personal. (He’s utilizing his eyes laboriously to sort solutions to my questions by way of a sight-activated keyboard.)

‘Days might go after I by no means as soon as bear in mind that previously I might stroll or transfer or (absurdly) even that I might speak,’ he tells me.

‘My mind has its personal ‘new regular’. As an alternative of feeling like one of many residing useless, I really feel absolutely alive, excited. I am actually wanting ahead to the longer term. I am 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 lifetime of exercise, spontaneity and impromptu dialog? Extremely, he doesn’t. ‘I do know that is going to sound ridiculous,’ he tells me. ‘Or delusional. Or a lie. However I do not miss very a lot in any respect. Any greater than I missed being a child after I grew to become a youngster. I am wanting ahead’

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

‘I might anticipated being nearly locked-in would really feel somewhat traumatic. In actuality although, I get to sit down round quite a bit whereas individuals pamper me. Consider the life-style of a sedentary pharaoh and you will not go far unsuitable. It is somewhat stress-free.

‘I think the trick to having fun with paralysis is just to think about you are in a luxurious spa lodge 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 expertise that may rework his life and set a template for others disabled by outdated age or sickness sooner or later.

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

However 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 purpose 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.

Once 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 light, 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 price.

‘Francis demonstrates on daily basis 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 mind (in addition to his dazzling smile and lengthy legs), and the attraction stays undimmed.

‘He’s nonetheless the identical Peter. His physique has modified however his mind, like a advantageous wine, will get higher with age. And his energy and bravado, the way in which he is dealt together 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. However he might by no means make a cup of tea. He is by no means identified the place the kitchen is.

‘So we complement one another. He is at all times been in a position to lose himself for hours on his laptop, whereas I’ve solely simply mastered the TV distant management. However the distinction now could be that I can simply plug him in so he could be fed and watered whereas he is working.’

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

It’s laborious to know the sheer scale of the expertise which is prolonging his productive and comfortable life. He and Francis envisage they may have 20 extra years collectively.

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

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 can also be the title of his e-book — and he tells me it’s continuously 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 purpose 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 have been a 12 months in the past. They will maintain enhancing 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 will be 1,000 instances extra highly effective by the point I am 80.’

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

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

‘Because of pioneering analysis, I am transitioning to turn into an alternate model of my outdated self. It is a renaissance. A rebirth,’ he explains. ‘I am not a lot disabled (though I am fiercely proud to be referred to as that) as trans-abled. I am completely not ‘handicapped’.

‘For example, I can eat and drink whereas I am asleep. I by no means have to rise up within the night time to have a pee. Certainly I have not gone to the john for years.

‘However I am hydrated 24/7. I can breathe completely properly with a moist flannel pressed over my mouth and nostril. The widespread chilly cannot take maintain and might by no means unfold to my chest. And I can speak 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’s excited that ‘geniuses’ on the Edinburgh firm CereProc try to get his cloned voice to sing Rise Like A Phoenix. (The drag queen Conchita Wurst sang this on the Eurovision Track Contest in 2014.)

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

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

Peter 2.0 can also be narrating the primary and previous few pages of his audiobook — and the extracts present emotion and subtleties that was once uniquely the protect of the human voice.

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

Contemplating the ambition of the cloned voice challenge, there have been few glitches with it. Nonetheless, it operates like a complicated type of predictive textual content and sometimes there have been comedian errors.

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

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

‘However I’ve solely to sort ‘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.’

Though Peter repeatedly corrects it, the AI is not going to enable it to be modified.

So when sooner or later, on a video name, Jerry made an audaciously intelligent proposal and awaited Peter’s verdict, his artificial voice concluded: ‘You are an unbelievable jerk’ as a substitute of ‘You are unbelievable Jerry!’ (Fortunately, 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 have been starting to indicate, Military veteran Andrew gave up his profession internet hosting VIPs flying into Exeter airport to turn into his private assistant.

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

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

‘I am skilled to alter the tubes into Peter’s throat and bladder. I am not fazed in any respect,’ he says brightly.

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

‘Though I am sorely tempted to present a full-bore X-rated reply to this, I think a lot 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 in regards to the Scott-Morgans is that their plans for the longer term, removed from being curtailed by Peter’s situation, are increasing ambitiously.

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

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

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

‘Essentially the most superb feeling, my biggest explanation for unrelenting optimism, is that due to the explosive progress in computing energy, each couple of years that I cheat dying, my potential to take pleasure in life due to high-tech will double. That is a thousand instances the ability 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 incapability to savour the meals he as soon as beloved 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 will be holding courtroom to my captive viewers. Who do you are feeling sorry for now?’

I’m wondering, was there ever a time when he and Francis railed towards MND, wept in regards to the arbitrary injustice of life? 

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

However this remoted second of desolation and anger handed. Inside minutes, they have 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 in regards to the enduring energy of affection as it’s 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.

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

‘With out MND we would have loved ourselves however achieved little. With MND — bizarrely, completely unexpectedly, magically — we could possibly 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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