Nuala McCann: Peter Scott-Morgan's astonishing story will leave you stunned at his passion for life
Eventually he will have a machine to help him breathe – when the paralysis moves on up through his body and into his head, he will have a lifelike avatar on a screen to be Peter when MND renders his face immobile and flat
FOUR years ago, scientist Peter Scott-Morgan got out of the bath and tried to shake his foot dry. Nothing was happening, he said. It was the first sign that something was wrong.
Peter has motor neurone disease. It crept like a thief in the night through his body, stealing his ability to walk, compromising his ability to eat or to use the toilet.
But Peter Scott-Morgan, the scientist, is a solutions-based man. He is in the mould of the great Stephen Hawking and he has the wheelchair and voice-activated system to match.
Hawking once said that you should always think of what you can do, not what you can't. Peter Scott-Morgan took that to heart. He is bright and incredibly positive. He has a PhD in robotics and a will to turn the situation around.
Out of all this came Peter: The Human Cyborg – a documentary for Channel 4 about his battle to use his intellect and the availability of hi-tech software and hardware to fight the MND. So we see him slowly losing his functions – it takes a carer three hours to get him up in the morning. But we also see him putting his master plan in order.
He will be a human cyborg... First up: the plumbing. He gets an operation to insert a series of tubes to sort out his digestive and excretory systems. After the op, he whips up his T-shirt and shows us a series of outlets responsible for all the functions – there's a flourish about it all, the pee and the poo tubes – the nutrients in and nutrients out.
“I'm set for life, I don't know why everyone shouldn't have these,” he says with a smile.
Eventually he will have a machine to help him breathe – when the paralysis moves on up through his body and into his head, he will have a lifelike avatar on a screen to be Peter when MND renders his face immobile and flat.
At this stage, I was crying but was also marvelling at how anyone could be so resilient in the face of such devastating loss.
But on he ploughed. There were setbacks and the MND was moving fast. The voice replicator machine needed a bit of work so that it could really sound like him. He had to make the decision to have an operation that would mean he would lose the power of speech forever. He hadn't a lot of choice as otherwise he would have drowned in his own lungs.
He talked to the surgeon who said he had met some people with cancer who had not wanted the laryngectomy because they hated the thought of losing their voice. Peter went with it. We saw him in the operation prep room, whispering his name, agreeing to the surgery, smiling.
There was a point when this documentary took a powerful swing in another direction. Yes, it was still about an inspirational man who willed himself into the future. He was a man in a wheelchair who found a machine that meant he could stand up. Amazing how the world looks when you're standing tall and how people whose gaze swoops over you in your wheelchair, now look at you, address you.
But forget the robotics, this is really a love story. Francis met Peter 40 years ago at a time when he found out that a friend had been killed in a homophobic attack. It was love at first sight – with Peter, his woes had gone.
We saw pictures of them as young men on holiday – long hair and a Duran Duran vibe. They got married on the first day that gay men were able to – we saw their wedding video, the little bridesmaids – the sheer joy on their faces.
Roll on to the present, and here was Peter still passionate and optimistic and Francis, his partner, standing firmly at his side.
There was a telling moment after that laryngectomy that robbed him of his voice. Francis got the new Peter software voice to sing a song. There were tears all round.
Albert Camus said: “In the depths of winter, I found there was within me an invincible summer. And that makes me happy.”
Peter is forging ahead with plans and Francis is there 100 per cent.
“Now is not the end of anything. Now is when the fun begins,” he said, leaving us stunned at his passion for life.