The Times Magazine 2019

The Times, August 3 2019, 12:01am

I’m dealing with motor neurone disease by becoming a cyborg

Most patients diagnosed with motor neurone disease die within three years; few are able to face the devastating symptoms with anything other than the most rudimentary treatments. Not so Dr Peter Scott-Morgan, a world-renowned roboticist and artificial intelligence expert, who had a very radical idea about how to meet the challenges ahead. By Ben Machell

Dr Peter Scott-Morgan, 61, photographed at his home in Devon in JulyTOM JACKSON

In late 2016, scientist Dr Peter Scott-Morgan began to notice something odd. It was his toes. He couldn’t wiggle them. Or at least, he couldn’t wiggle them reliably, on cue, whenever he wanted. A fit and lean 58-year-old, he assumed that he had picked up some kind of muscle strain, didn’t think too much about it and got on with his life in Torquay with his husband, Francis, and their cat, Smoggy. Then, a few weeks later, he remembers getting out of the bath and trying to shake some water from his foot. Only, his foot didn’t respond to what he was telling it to do. He found this puzzling. “It was like when the batteries on your TV remote start to go,” he says. “Sometimes it works. But sometimes it doesn’t.”

Things started to get worse. He developed a limp. His grip began to weaken. There was no numbness or pins and needles – “I could feel everything” – but he couldn’t always make his body do what he was telling it to do. The batteries in his internal remote control appeared to be dying. Test followed test followed test. Blood work, MRI scans, lumbar punctures, everything. He was referred to the National Hospital for Neurology and Neurosurgery in London, where, exactly one year after his toes stopped wiggling, he received a diagnosis. He had motor neurone disease. Specialist nerve cells in his brain and spinal cord called motor neurones were, for reasons we still do not fully understand, ceasing to work as they should. He was experiencing what is known as neurodegeneration, a process by which he would gradually but inexorably lose his ability to walk, talk, speak, swallow, breathe. Eventually, he would become completely locked in, unable to move any part of his body at all, save for his pale blue eyes, which would still be able to dart around the room even as he lay atrophied and statue still in a hospital bed. Medical interventions such as breathing tubes, feeding tubes and ventilators might help keep him alive in this state, although most of those diagnosed with motor neurone disease (MND) in the UK die within three years of experiencing their first symptoms. The neurologist who was with him said that she was terribly sorry.

Scott-Morgan sat in the consulting room and absorbed the news. He says that his first thought was how to explain this to Francis in such a way that meant they wouldn’t “miss out” on their planned trip to the nearby Petrie Museum of Egyptian Archeology later that afternoon. But his second thought – “about ten seconds after” – was a kind of relief. For months he had been researching the potential causes of his deterioration, and he knew full well that MND was a possibility. And as someone with a degree in computing, a master’s in artificial intelligence and a PhD in robotics, he found that he did not view the disease with quite the same cold horror as most people. “Two months before my diagnosis, I was having these chats with Francis and saying, you know, it’s really bizarre; everybody describes it as the cruellest disease. And it’s not great. But there’s no pain. No nausea. You can live if you want to. These days, why doesn’t everybody talk about all the tech you could use?”

So to Scott-Morgan, it was straightforward. If he did receive a MND diagnosis, he would put his faith in technology. Not just in order to eke out a few extra years, or to slowly wither with a marginally higher degree of dignity than he might otherwise. His belief was that he could not just survive the disease, but actually thrive. To lead a comfortable and fulfilling life for maybe another two decades. But in order to achieve this, he knew he would have to do something quite specific. He would have to turn himself into the first true cyborg in human history. So when the awful diagnosis actually came, the reason for his relief was that he already had a plan in place. “I thought, thank goodness I’ve thought this through,” he says. “Now I’d better sort out the details.”

We are sitting together in Scott-Morgan’s office, at the rear of a bright and airy newbuild house on the edge of Torquay. It is a lovely summer’s day on the English Riviera. There is a palm tree out front and a soft, warm wind breathes gently through a pair of open double doors leading out to the garden. Scott-Morgan is in a large, heavy electric wheelchair. Already elfin prior to his illness, he is now incredibly frail. His legs are plainly withered, even under a pair of baggy black combat trousers, and his hands lie on his lap, twisted inwards and inert. He still has some strength and movement in his neck, though his head will sometimes loll. His speech is slow and strained – words sometimes coming out half-formed, as though they’re being dragged from his mouth rather than projected from within. But his eyes are keen and direct, and he spends a lot of time smiling. He has a sense of humour, and he and Francis will gently rib themselves and each other. He describes, for example, his total inability to move the duvet off him at night when he’s hot. “It’s like I’m Mr Burns in The Simpsons.”

The stuff about becoming the world’s first cyborg – a cybernetic organism, part human, part tech – is no joke, though. Over the past two years he has, as promised, been sorting out the details. It should be stressed that Scott-Morgan is not an eccentric, or a crank, or somebody desperately casting about for answers when faced with horrific circumstances. He knows exactly what he is doing, and an international team of scientists, engineers, artists and researchers working for multinationals including Intel, DXC Technology and Accenture have all been persuaded to help this plan become a reality. He is the subject of an ongoing documentary being made by Sugar Films, the results of which will be broadcast on Channel 4 next year as The Human Guinea Pig. He will employ artificial intelligence, enhanced reality, virtual reality, maybe even exo-skeletons and perhaps, eventually, an ability to exist completely outside his physical body. Right now, the 61-year-old man before me describes himself as “Peter 1.0”. Very soon, he will transition into “Peter 2.0”.

With his husband, Francis, in Alaska on the day in 2016 that Scott-Morgan first became aware of any symptomsCOURTESY PETER SCOTT-MORGAN

Before we get to that, though, it’s important to know what Scott-Morgan has already had done to help him get to this stage. The first thing – the really major thing – was a groundbreaking and dangerous medical procedure carried out last year. When discussing his MND with doctors he was told, brightly, that there was a good chance he would remain fully continent even as the disease spread. “And this was said like it was a good thing,” he explains with a slow, sarcastic chuckle. Being continent is fine, provided you can physically get to where you need to go when you need to go. He cannot. It was suggested that he either rely on carers who could “toilet” him when needed (“Such a passive word …”) or, as a last resort, he could use incontinence pads. And the worst part was that his gut itself was perfectly healthy. “So I thought, this is an engineering issue, not a medical issue,” he says. “I just need replumbing.”

His solution? To demand three separate invasive procedures in one: a colostomy for his bowels, a catheter for his bladder and a feeding tube directly into his stomach. With this – a procedure he was told had never been done before – he would never need to physically get to a toilet again. Or, for that matter, eat. Initially, he was told “Hell would freeze over” before he found anyone willing to operate in this way on a perfectly healthy gut. But in the end he found a surgeon in nearby Torbay who thought it made perfect sense and, despite the risk of anaesthetising and operating on somebody with MND, corralled a team of other surgeons to carry out his “tripleostomy” on the NHS. “It was just a term I invented to make it sound important. But now everybody uses it.” It was even used in the title of a resulting article in the British Medical Journal.

Not only does this mean he is perfectly plumbed to become a cyborg, but there are fringe benefits, too. He says that now, thanks to his feeding tube, he can finally drink the recommended 2 litres of water a day, something he never managed prior to his illness. “I’m doing it now,” he says. “I do it in my sleep!” When Francis, who drifts in and out of the study to check on his husband, lets me know where the bathroom is, Scott-Morgan grins. “I can’t believe you still go to the toilet. That’s so retro.”

His next operation is on October 10. The moment he wakes from it will be the moment he becomes Peter 2.0. He will undergo something called a laryngectomy. Basically, he explains, people who die of MND generally do so because they are unable to eat or unable to breathe. The feeding tube means the former is no longer an issue, but his lung capacity is already down to 35 per cent and dropping. Without “invasive ventilation” he will die, most likely sooner rather than later. “I really would not last the winter,” he says. “I had very bad problems with not being able to breathe when I got a very, very mild cold about two months ago. I would not get through a cold season.”

The most straightforward solution in this situation is to undergo a tracheotomy and then acquire something called a “cough assist machine”, which helps to clear your lungs of phlegm. “But then I did a bit more research. It said that a tracheotomy can keep you going a good few years. Well, why can’t it keep me going for decades? But it turns out that with a tracheotomy the thing that most often kills you is that you get a bit of saliva or food that goes into the lungs. It’s called an aspiration. It’s warm and moist in your lungs, nutrients grow on it and so you get pneumonia.”

The fact that our oesophagus (which leads to the stomach) and trachea (which leads to the lungs) are connected is again simply “sloppy engineering” on the part of the human body. So he did some more research and found that people with throat cancer sometimes undergo a laryngectomy, in which the oesophagus and trachea are separated. The good news? Nothing that’s not meant to be in his lungs will get into his lungs. The bad news? He will no longer be able to speak. But this is where things start to go far beyond the realms of bodily replumbing. Because actually, when he comes round from the operation, he will be able to speak, albeit digitally. He will be able to chat far more fluently than he can now, and even as his paralysis spreads to his face, will be able to pull as many expressions as you or me.

With Francis in the EightiesCOURTESY PETER SCOTT-MORGAN

How is this possible? The answer is artificial intelligence. By the start of 2019, Scott-Morgan had convinced those big tech companies – Intel, DXC, etc – he would be the perfect guinea pig for becoming a cyborg and they should team with a foundation he had created. Together, they have developed a system that will allow him – and people like him – to communicate like ordinary human beings. To understand how it works, a good starting point would be to think of Stephen Hawking and how he spoke. By using an optical sensor he was able to build sentences; a voice synthesizer would then deliver them. This was exact, but slow. What Scott-Morgan is having developed for him, in part by some of the very same people who worked with Hawking, is very different. Rather than using his eyes to construct sentences, an AI system will present him with a list of responses that he can immediately choose from and use. “It’s a bit like a sat-nav giving you a choice of routes. When somebody walks into the room, the AI will listen to what they say to me and suggest different options. ‘Wonderful to see you!’ ‘How was your trip?’ ‘You’re looking good!’ And within two seconds I can carry on a spontaneous conversation.”

And because it’s AI, it will learn. It has already analysed how he speaks, but as Scott-Morgan talks to different people in different situations, the AI will refine and refine the options it gives him. Earlier this year, when his voice was still unaffected by his illness, he recorded more than 60 hours’ worth of words, sounds and seemingly random noises that can now be assembled into fluid sentences. And unlike Hawking’s somewhat disembodied synthesized speech, Scott-Morgan’s voice can be loaded with emotion. New instantaneous translation technologies mean he will be able to respond to people speaking to him in Mandarin, even though he does not know Mandarin. But AI does. “I will be able to swear in any language on the planet,” he says. “Shit! MerdeScheisse! It will be brilliant.”

Finally, a screen mounted on a breastplate will allow us to see a photo-realistic avatar of his face. It is being developed by the same team who digitally duplicated Carrie Fisher’s face for the latest Star Wars movie following her death, and while this face will speak Scott-Morgan’s words following his laryngectomy, it will also laugh, grin, smile and frown as he and – increasingly – the system’s AI instruct it to. The cost of the hardware, software and research that has gone into all this is, he says, hard to calculate, mainly because so many tech companies are working with his foundation for nothing. “It’s a bit like trying to cost Band Aid or Comic Relief. If people charged their usual rates it would be astronomical.” It is likely to run into the “millions”, but once they have perfected the AI software, it will be made open-source and available to anyone. “Even if the true cost of the software development ends up being several million, a whole generation will soon be able to afford to be Six Million Dollar Men and Women.”

With Francis last month TOM JACKSON

He says that the experience of working with AI in order to exist beyond his physical “husk” will be a bit like a director working with an improv actor. Sometimes, he hopes, the AI will even suggest far cleverer or funnier responses than he could have come up with on his own. Which does raise some fairly philosophical questions. I ask Francis if, in a few months’ time when he’s having a chat with the bright and unblemished avatar of his husband’s face, he will ever secretly wonder whom he’s actually talking to. Peter? Or the AI? “You will be talking to us,” Scott-Morgan interjects softly. Francis rolls his eyes. “There’s three in this relationship now.”

We all have a little laugh about that. Scott-Morgan continues, smiling, but with a strain creeping into his voice. “It’s the partner who suffers the worst,” he says. They have to watch the person they love not just deteriorate physically, but drift away emotionally. With a traditional voice synthesizer, it is almost impossible to convey intimacy and nuance, which is incredibly painful for both parties. At least as a cyborg, he will still be able to do much of this. “You will talk to me, but you will never, ever talk to the biological me,” he says. “You will only talk to the AI who is controlling the avatar and the voice. But I have nothing else. That is the real me. That is my true persona. I’m not playing a computer game. For all its faults, I will be the real Peter 2.0. And this is where it touches on what it means to be human. It would be unfair to say, ‘That’s not the real Peter,’ or, ‘That’s a hybrid of him and AI.’ No. That’s the real me from now on. I will still feel. I will still love. I said to Francis a long time ago that we would be together for a long time. And by hook or by crook, I will fulfil that promise.”

And for all the tech, love is central to Scott-Morgan’s story. The fact he is gay is absolutely relevant. It is very unlikely we’d even be here, talking about his future as a cyborg, if he were not. He grew up in Wimbledon, the son of “well-connected” parents who sent him to independent school. His father, an electrical engineer, was appointed MBE for helping to design key parts of the communications strategy for D-Day. Precociously intelligent, Scott-Morgan describes his childhood as almost being one of complacency. “I was very happy to be part of the establishment, as were all of my extended family.”

But by the age of 13, he knew he was gay. By the age of 16 he was being hauled into the headmaster’s office and reprimanded for the way he carried himself around school. He was punished for being who he was, and told to leave the school’s dramatic society, of which he was a leading light. But rather than be bullied by staff and fellow pupils, he began to rebel. He did not hide his sexuality. He took karate classes and, to fill the drama void, joined the school’s computing society, developing a fascination with this new technology, and rejected Oxbridge for Imperial College so that he could pursue this interest. But far worse was when he came out as gay to his family at the age of 20, a few weeks after having met Francis in 1979 at the Cliff House Hotel in Torquay, one of the few gay hotels outside London. “It was instantaneous,” he says. “Love at first sight.”

When he told his family, he was given an ultimatum: choose Francis or them. He chose Francis. “I win!” chimes his husband quietly. With the exception of his parents, nobody else in his extended family ever spoke to him again. They moved in together while Peter studied robotics. “We were absolutely penniless. No support. We lived in a garage flat. Cold water. Five pence a day to go into the gas meter. It was very romantic,” says Scott-Morgan. “Peter and Francis against the world.”

Those experiences helped prepare them for what’s happening now. They gave them the “backbone” not simply to capitulate and do what is expected, which, in the case of MND is simply not to live for very long. “The medical establishment says, ‘Statistically, you’ll be dead in two years and even if you could live longer, why would you want to?’ There was never a second when I felt like that. But I wonder, if I had not been gay and been, as intended, a member of the establishment, whether I would have just accepted that this is the way it goes, these are the rules and I have two years to live?”

It also helped that he was forced to give up drama and found computing instead. In 1984, he wrote a book, The Robotics Revolution, which predicted that humanity would reach a fork in the road where we’d have to decide if we wanted to develop AI that existed independently of us or that collaborated with us. “Fortunately, it’s a fork in the road we have reached right about now,” he says. Scott-Morgan is hoping he can demonstrate the collaborative AI path is the one we should take. But had he developed his illness even a few years earlier, the technology to allow his cyborg plan to happen wouldn’t have existed. “It’s pure luck. I happened to be in the right place at the right time.”

For all his enthusiasm about the tech and its possibilities, he still spends a lot of time in a state of deep sadness about what is befalling him. “I have two diametrically opposed emotions in my brain at the same time. I spend a lot of time, necessarily, thinking about what it’s going to be like being completely locked in, what is going to be particularly scary or frustrating. Because those are the areas I have to focus on if I want to try to think of solutions that will help me be ahead of the curve. On October 10, I will say my very last words. Well of course that’s poignant. I never stop talking. But on that same day, when I wake up, I will be helping to forge a new path for all those who can’t speak.”

He sits in his office talking about the future as Smoggy the cat rubs herself against our legs. Computer processing power is increasing exponentially, year on year. Prototype hardware called CHARLIE – Cybernetic Harness and Robotic Life Improving Exoskeleton – may soon allow him to stand upright and move his arms, to reach out and touch a loved one. He will spend time in virtual reality landscapes. Maybe he will be able to inhabit drones, and accompany Francis on hikes to the tops of mountains. He will, perhaps, be able to exist in several places at once. The possibilities, once you dig into them, are dizzying.

That’s the dream, anyway. He knows it won’t be that straightforward. “It can’t possibly be. It will be hopeless and frustrating. Come October, I will be much worse off than if I had taken the commonsense approach of a low-tech solution. But that’s OK. The reality is that every time it fails or goes wrong and you get really frustrated, you learn from it,” he says.

“I go in with my eyes open. There will be times I will be feeling very, very sorry for myself. But Francis is excellent at pulling me out. For the first six months it will be pretty grim. But from then on, things will get better. I will learn how to use the systems better. The AI will get better. Everything will get better. So even in my lowest moment, I will know this is as bad as it gets. How incredible is that? I am so lucky and I keep reminding myself I’m so lucky. I will climb out of that valley. And things won’t just improve. After a while, it will accelerate. And that’s awesome.”

Already, says Francis, they have received messages from other people with motor neurone disease. One man said that he had made inquiries at Dignitas, but is now waiting to see how Scott-Morgan gets on. But this isn’t just for people with a specific disease. We will all, eventually, get old and become immobile. We shouldn’t kid ourselves that, when the time comes, we might not yearn for something not so different.

“Here I am, trapped only because of the physical limitations of my body,” he says, before Francis drives me back to the railway station. “You imagine how liberating it will be to spend maybe most of my time in virtual reality. Really, really good virtual reality. And suddenly I can walk again. I can fly. I can be anywhere I want to be. And so can you. You can join me. We can explore universes that don’t exist. This is for all of us. I just get the chance to go to some of the places first,” he finishes, smiling. “But one day, you’ll be there, too.”