Peter Scott-Morgan was 58 when he received a diagnosis of motor-neurone disease. He was well-aware of the the mortality statistics: 30 per cent dead within one year, 50 per cent dead within two years, 90 per cent dead in five years. "Most sufferers became almost totally locked in, able only to move their eyes — typically to explore a boring hospital ceiling," he writes in his memoir, Peter 2.0. But instead of resign himself to fate, the scientist saw this life-changing moment as one in which to transform himself. Here, in this extract, he reveals his thinking process.
I jolted awake and squinted at the unfamiliar bedside clock: 03.05. I was instantly fully aware, slapped by the instant realisation that only upon waking was I having a nightmare.
It was the sense of impotent dread I would forever associate with being 16, waiting outside the headmaster’s study, listening with a white face, open mouth, sick stomach and hammering heart to the muffled sounds coming through the padded door – murmuring, silence, one stroke, two, three, murmuring, door open, ‘Next!’
Without warning, what felt like a night terror attacked.
Followed by another. Until they overwhelmed me.
You’re going to die!
No, I’m not. I’ll have a feeding tube and a mechanical ventilator.
Pathetic answer – those will not be enough. If they were, everyone with MND would do the same. But they die instead. Just like you will. Unlike you, they have the courage to accept the inevitable.
It’s not inevitable. People just don’t often choose to carry on until they’re locked in.
Don’t be stupid, you delusional, pompous fantasist! You’re a disgrace to Science. Trust the statistics – you’ll most probably be dead in two years. Like everyone else.
If Stephen Hawking can survive, so can I.
Aah, here it comes. The great Dr Scott-Morgan compares himself to the most famous cosmologist on the planet. How arrogant, how desperate is that?
He had a vent pump fitted in 1985.
He got MND when he was much younger than you. He deteriorated far more slowly than you. He is much richer than you and can afford the best 24-hour care. You are not, and never will be, in any possible way, comparable. You will die a common, average, unexceptional death. And no one will notice.
Even if I do die early, I should be able to last at least five years. Ten per cent of patients last five years.
Yes, but you don’t know if they have less aggressive forms of MND than you. You’ll probably deteriorate faster. Even if you do last five years, you’ll be completely paralysed apart from your eyes – powerless, trapped for as long as you can survive in the ultimate straitjacket of your own living corpse.
Other people cope.
You won’t. All your senses will be unaffected. You’ll feel every itch but never be able to scratch.
Other people cope.
You won’t. You’ll get claustrophobic. Remember when you got stuck crawling through that tight cave tunnel as a fearless undergrad? You’ve always prided yourself on how you calmed yourself and thought your way out of it, but you won’t be able to think your way out of this one. Your clever brain and all your expensive education won’t make the slightest difference, will it?
You won’t even be able to cope with not talking. And everyone who’s ever had to put up with you going on and on and on interminably will be delighted you’ve finally shut up. And you won’t be able to stand it.
I’m not sure . . .
You’re about to destroy the lives of everyone around you. You’re not the only one who won’t be able to stand it all, you know. You only got your first symptoms a year ago, yet you’re already a cripple. People look away from you as you shuffle towards them. You’re an embarrassment. An embarrassment to Francis.
He didn’t sign up for this.
Yet despite that, you have such an overinflated ego that you insist on single-mindedly pursuing your own self-centred agenda of survival at any cost – oblivious to the collateral damage to those around you, to the person who loves you most.
He deserves better.
If you love him a fraction as much as you claim, you won’t prolong his suffering. You’ll save him from having to watch you slowly decay into uselessness, continuously saying one painful goodbye to a shared activity after another until eventually you go to a place where even he cannot follow. If you really love him, you’ll protect him.
Because otherwise, he’ll learn to resent you. And then he’ll leave you. And he’ll put you in a nursing home full of old people that smells of piss. And he’ll let you die alone.
What?!? This is absurd. It’s the middle of the night, and it’s the first time my subconscious has had a chance to process the full enormity of my diagnosis. Take a deep breath. Calm down. Think your way through this.
Gradually, I became aware of the reassuring snuffle of Francis softly snoring beside me. Always beside me. Whatever the battle. Francis and Peter Against the World. I could no longer feel my heart pounding, my breathing had returned to normal and there were no terrors lurking in the shadows.
In their place was something far more pitiable.
As my subconscious and conscious persisted in their internal monologue for a while longer, our interaction seamlessly transformed into two completely different characters. My co-actor now appeared to be little more than a boy, years before he would be forced to wait outside the headmaster’s study. He was hiding in a corner, naked on the floor, hugging his knees and shivering, just as I was from the still-cold sweat.
I know you are. It’s all right to be scared. It’s perfectly reasonable. But in the morning, the sun will come up, and Francis will be awake, and we’ll have a nice breakfast, and we’ll all feel a lot better. And then Francis and I will take on the world, and win. For now, we’ve got to be strong.
But MND is stronger.
No, it’s not! MND is just another bully, the ultimate Establishment bully. And the Scott-Morgans don’t give in to bullies. You know that.
But there’s no treatment.
There are lots and lots and lots of possible treatments. It’s just that they’re hi-tech treatments, not medical treatments, so their potential is being ignored. MND has intimidated people unopposed for so long that its unquestioned reign of terror has become institutionalized. Everyone’s just waiting for a magical cure to save them. But I believe in the possibility of something else, something radically new, something utterly amazing. With technology no one has seen before. Science fiction made real. I know it’s possible.
Will it be fun?
I was completely unprepared for my brain to take such a violent tack as it veered course. For 10 seconds, maybe 20 seconds, I luxuriated in the exquisiteness of experiencing polar-opposite emotions at the same time: still fear, anger, despair but also – just as powerfully now – excitement, joy, hope.
Then, the new emotions, the positive emotions, began to dominate. I felt a warmth, a sense of power spreading out from my inner core. The last psychic echo of the terrors dwindled into irrelevance, vanquished.
With my cheeks still prickling from drying tears, I found myself smiling. I felt exuberant.
It’s going to be a bit ‘best of times, worst of times’ but it’s going to be awesome! And we’ll have to track down some of the most ultra-cool hi-tech in this corner of the galaxy.
It’s an adventure! We love adventures!
We’ve got two years before statistically I should be dead. That means we’ve got two years to rewrite the future. And change the world.
There’ll be battles all the way, and then the ultimate life-or-death showdown. Either we’ll win, in which case everything will change, or we’ll very conspicuously fail. Which isn’t going to happen. There can be no middle ground.
MND expects me to die. I refuse.
I also refuse merely to ‘stay alive’ in a form of living death.
Also – a complete revelation to me as the thought distilled and suddenly became recognisable – I refuse too to leave everyone else behind, traumatised by their two-year death sentence, scared to die, terrified to live. We’ll gather an army. We’ll build a movement. This is rebellion!
And this isn’t just about me and about us. This is about using cutting-edge technology to solve other forms of extreme disability, caused by disease, or accident or old age. This is about everyone who’s ever felt themselves to be a freethinking intelligence trapped in an inadequate physical body. This is about every teenager – and grown-up – who’s ever wanted to be more, better, different . . .
This is about changing what it means to be human.
I’m not going to waste another second working out how I can stay alive. I’m now not the least bit interested in ways to survive. Tonight, Francis and I are going to crack open our very best bottle of champagne and we’ll celebrate that I am not going to solve the problem of how to survive.
I’m going to solve how we can all truly thrive . . .