Tuesday, 18 August 2020
Peter: The Human Cyborg Q&A
Peter: The Human Cyborg is the extraordinary journey of super-scientist Peter Scott-Morgan as he turns himself into a cyborg in an attempt to overcome the Motor Neurone Disease (MND) that will otherwise kill him. With much of the technology being applied for the first time, Peter’s journey has profound implications for many people who suffer from conditions like MND, as well as opening up the biggest question of all: what does it mean to be human? We talk to him about his phenomenal journey.
Peter: The Human Cyborg airs at 9pm, on Wednesday, 26th August on Channel 4.
It’s now 10 months since the operation in which you sacrificed your voice in order to preserve your ability to breathe. How are you?
I actually feel amazing, which is a bit of a surprise. I can still move some of the muscles in my head, but apart from that, I am by now pretty well paralysed, which I had expected to be a little traumatic. In reality though, I find it just means I get to sit around a lot while people fuss over me. I suspect the trick to enjoying total paralysis is simply to imagine you’re in a luxury spa hotel and the maître d insisted you put your feet up and don’t move a muscle.
Why do you think you feel so upbeat?
Ever since I knew that my final operation had been a success (what you don’t see in the film is that I actually got out of hospital in record time), I’ve felt like I got a new lease of life. Realistically, my condition was getting so bad that, because of the form of my deterioration, without that last pioneering op at my local NHS hospital, I’d have been unlikely to make it through last winter. Instead, I may well be around for decades. What’s not to feel upbeat about?
Ever since you were diagnosed, you’ve never wavered in your total faith that technology was your way out of a death sentence. How do you keep that up?
Facing everything head-on with the man I’ve loved all my adult life certainly helps! We’ve always had the mantra of turning liabilities into assets, and motor neurone disease is no exception. So every step we’ve taken over the last almost three years since diagnosis (when I was given two years to live), have felt pretty obviously the right path to both of us. It’s vastly easier to head where no-one has gone before when every step of the way someone you trust completely is reassuring you that you’re doing the right thing.
What about losing your voice forever? Surely that must have proved traumatic?
Again, surprisingly not. Frustrating sometimes, yes. But nothing near traumatic. To be fair, I spent all my life up till last year speaking far too much. So I’m really now only making up for lost silence. With that said, it would feel awful if I wasn’t able to generate my own voice using my eyes to spell out the words. Constantly speaking with what is recognisable as my voice, has totally taken the sting out of giving up my biological voice.
Is there a lesson for others here?
Yes, absolutely! Although we are experimenting with cutting edge ways that will let me, and eventually everyone, show emotion in my synthesised voice, it is already very easy and cheap for anybody to bank their voice. So, if there is any chance of you losing your voice, bank it while your voice is still strong. Like me, you will be so incredibly grateful you did, every single time you use it.
How about the pioneering ‘replumbing’ you had done near the start of the film? How has that worked out?
No one in the world had ever had the tripleostomy (my first operation). I invented the idea – even the name – and persuaded the NHS in Torbay to pioneer it. It has subsequently been written up as a medical paper – Thriving, not just surviving, with motor neurone disease. The outcome of the first pre-emptive ‘triple-ostomy’ – that was chosen as the Oxford Medical Case Report of the year for 2019. I frankly can’t imagine life without it. More accurately, I can imagine it and the thought is horrendous! In the morning and evening I have my 12-hourly service, and that’s it. I haven’t needed the loo for almost 2 years. And after decades of trying but failing to drink the recommended two litres of water a day, I now have it slowly released into my body over 24 hours, even while I’m asleep. I’m permanently fully hydrated for the first time in my life!
Say a bit more about how the final operation we saw came about.
My wonderful ENT surgeon that you see in the film confirmed that the second operation (the ‘full-laryngectomy’) had only ever been given in the UK once before to someone with MND. But that was an emergency. Back in 1985. I came up with the proposal that there were very real advantages to experimenting with conducting a laryngectomy before there was any urgency, even though it required the sacrifice of my voice, and would leave me close to locked-in. So, bizarrely, mine appears to have been the first elective laryngectomy for MND in the UK. Coincidently, the earlier patient was also a scientist. A guy called Stephen Hawking.
What has been the best thing about the last year?
Still being alive is definitely up there. As is finding myself working seven days a week, harder than at any time in my career. And the extraordinary kindness of strangers should not be a surprise to me, although for some reason in the modern world it is. However, maybe the best thing, or at least the most pleasant surprise, is a bit bizarre. Statistically I should be dead, and according to the relentlessly depressing story of MND that everyone insists on pedalling, I should at the very least be feeling close to suicidal. But instead, I feel alive, excited, I’m really looking forward to the future. I’m having fun!
Why do you think that is?
All the obvious reasons revolving around Francis, my close family, the team looking after me, technology, unwarranted good fortune. But there is something more, which I consider a crucial discovery. Contrary to the torturous scare stories about how it feels to be trapped in the straightjacket of your own living corpse, the brain moves on. It grieves a bit, and then, if you give it the chance, most of the time it forgets. Days may pass when I never once remember that in the past I could walk, or move, or (absurdly) even that I could talk. My brain has its own ‘new normal’. The plasticity of the brain to adapt in this way astounds me. It should also bring tremendous hope to anyone coming to terms with Extreme Disability, let alone MND. It certainly does to me.
Your experience is the complete opposite of what everyone says MND is like. Surely, MND is universally accepted as ‘the cruellest disease’?
Not in my corner of the universe! Not anymore. To be fair, it was once. It was an evil way to go. But we are now well into the 21st century. The route by which hi-tech will utterly transform what it means to have MND is pretty obvious to anyone that wants to see. Maybe it’s only me, but I have no problem with saying, it doesn’t have to be that bad these days. I would infinitely rather have MND than an inoperable brain tumour. And as someone already in ‘Late Stage’ MND, I have to say that my experience is that I am not just surviving. I’m THRIVING!
What has been the greatest challenge you have faced since filming wrapped?
Covid 19. But it’s also brought the greatest benefit. I quickly received an official letter saying I was ‘extremely vulnerable’. [This was actually sloppy science because no-one in fact knows how someone with MND and a laryngectomy is likely to react to a spectrum of respiratory infections, because we’ve never had a chance to study it before. But I let that pass.] What was illuminating came from some conversations with the NHS around the same time: even intensive care wouldn’t be able to look after me if I got ill. And no-one could visit us. We were on our own.
So what did you do? And what was the great benefit you gained?
We set up our own intensive care unit at home. We were already part way there. When I’d returned from hospital, the NHS had provided us with hi-tech equipment ranging from ventilators and cough assist machines to oxygen cylinders, cuff manometers and blood oxygen monitors, so, along with my hospital-style bed, we already had the right props. And, just in case, since my operation Francis had
got himself specialist medical training and was probably now one of the very few in the country who was officially signed off to replace the tubing into my bladder, my stomach, my colon, and my lungs. Also, thanks to NHS continuous healthcare funding, I already had a care team very carefully selected by Francis who we had steadily trained to a high standard; now we upped our game still further. We adopted ICU protocol, with everyone but me dressed in PPE. And we kept progressing from there. Now, if I become seriously ill, we can manage without risk of me blocking an ICU bed. It’s an incredibly secure feeling. All thanks to coronavirus.
Has all your ongoing research been temporarily stopped because of the pandemic? Or have you continued to make breakthroughs?
A very few things got slowed because people couldn’t physically get access to me or my technology, but mainly it’s made no difference at all because everyone involved spends most of their day in front of a computer monitor anyway! An exciting development is we now have a new research team at Drexel University in the USA, working with the preeminent global IT integrator DXC Technology and all the experts you saw in the film. They’re researching a very Hollywood cyborg-like interface for me that uses a brand new type of augmented reality visor called a HoloLens2. The visor isn’t available to the public, only system developers. But we’ve been able to get a few to work on. We really think we can develop something that will transform how those of us with Extreme Disability interact with our environment.
You are the centre of more and more research. Tell us about The Scott-Morgan Foundation.
Francis and I are both passionate about using AI and hi-tech to transform what it means to have Extreme Disability, whether through accident or disease or old age. And we’ve been unbelievably lucky in being able to interest some of the world’s top brains in getting involved. So, around the end of filming, we set up a registered charity, with a fully independent Board, to act as the focus for a hugely ambitious research program stretching across decades. The Foundation’s website will go live straight after transmission of the documentary: www.scottmorganfoundation.org We’re incredibly proud of it – it’s the only research foundation of its kind in the world. And we hope to attract more and more of the planet’s most free-thinking and innovative corporations and experts to join us in our mission to revolutionise the future of Extreme Disability, and in so doing, change what it means to be human…
What would you like the legacy of your film to be?
In a word: HOPE! This is ‘terminal disease’ like we’ve never seen it before – and certainly not on television. The whole blindingly overriding reason for Francis and me to subject ourselves to the invasion of a very private time by public scrutiny was to get our message of ‘thriving’ out there to counter the defeatism in our culture around terminal illness. I remember saying to the director early on how it felt as if society just expected people like me to “statistically curl up and die on cue”. The Channel 4 film is an opportunity to get a different kind of message out there – a radical message. If Francis and I can inspire people to go out there and encourage a change in attitude, then the film will have done its job.