Patrick Joyce is happy. He’s got a beautiful wife, Kath, two boys – Rueben, eight and Elliot, three – and a baby girl, Nancy, who is a year old. Patrick has plans. Patrick is an optimist. Patrick has motor neurone disease.
The term probably brings to mind Professor Stephen Hawking, the astrophysicist who has lived with motor neurone disease for more than 45 years. But he is an isolated example at the extreme end of the tiny fraction of those who live with MND longer than a few years.
But Patrick, or Patrick the Optimist as he is styled as the face of the MND Association’s latest campaign, isn’t going to let the fact that his life has been cruelly curtailed aged just 41 get him down.
After seeing his doctor about weakness in hands in July 2007, it wasn’t until March 2008 that Joyce was diagnosed – by which time his own research led him to suspect what was coming.
“We were gutted,” he recalls. “But I got my head around it and knew that we just had to go on, so I wrote on a bit of paper ‘Hoping for the best, Planning for the worst’, and put down everything I needed to do for the family before I couldn’t do it any more, and some of thing things we wanted to do.”
He and Kathy made plans to be married straight away. “You don’t know how long you’ve got, I could have been dead in six months,” Joyce says, matter-of-factly. “Over time, we became reconciled to what was happening.”
A few months later Kath found out she was pregnant, with Nancy. “It was a very difficult decision. We knew she’d never know her dad,” he recalls. “But we wanted three kids not two and thought, why should we let MND stop us from doing what we wanted to do?
“I’m so glad we did – Kath was really chuffed it was a girl because she finally had someone to show how to knit, not that she won’t try with the boys too.”
A few weeks ago Nancy took her first steps. On his website, Joyce wrote: “Three faltering tiny steps, but a lovely, beautiful moment that I was alive to see. Life is good.”
Earlier this year, Joyce took on the role with the MND Association, setting himself a target of painting 100 portraits of “incurable optimists” in his life, and others suggested by the public. He has taken part in numerous cash-raising expeditions, including the Dusk to Dawn challenge in which he and his father, an amateur pilot, flew over and photographed all the major islands of the British Isles in a single day to raise £6,000.
He has also documented his life on video – life at home, flying over Britain with his father, or even attempting to get airborne on his motorised wheelchair at a skate park.
Any campaign featuring him was always going to be different, Joyce says: “Most stories about this kind of thing are sort of, oh dear, isn’t it sad this guy’s dying and he’s got kids. I was happy to do it but it has to be something that’s part of me. I’ve always thought you have to put the best face on things, because you only get one go. Life’s pretty short, and it’s pretty shit if you’re gloomy.”
It’s an attitude that visibly drives him on, squeezing in experiences while he’s able – a flight with his father from Norway out over the arctic circle, or taking part in a banger rally around Ireland – in between comparatively hum-drum campaign activities like visiting 10 Downing Street and Buckingham Palace.
“I’ve got the rest of my life to live. It’s just I have to squeeze mine into a shorter space,” he says.
When he opens the door at home in Wells, Somerset, the artist, inventor, some-time plumber and now amateur neurologist is walking unsteadily with the aid of a frame. He makes a cup of tea but is too weak to lift the two pint bottle of milk. “I’m very close to not being able to walk in the house because my legs are so weak I might have a fall,” he says.
MND affects the nerves in the spinal cord and brain that control movement, causing muscles to waste away. Eventually the patient cannot feed or breathe without assistance. More than half of those diagnosed die within 14 months, while those with a slower onset can expect two live two to five years. There is no known cure.
“The speed of your progression is fairly smooth, it advances at a certain rate and it doesn’t stop. If you have a fast progression you will die quickly, and if you have a low progression then you will die slowly,” Joyce says. “Some people lose the ability to walk first, or use their hands, or speak.” One by one the little indignities catch you: “One day you can pull up your trousers after going to the loo, the next day you can’t.”
More than three years after discovering his first symptom, Joyce’s speech is a little slurred and he has grown weaker. But he is utterly determined to meet his challenge, designing various devices to help him carry on. For example, a headrest and armrest to support him while painting. Noticing a gap in the market, he’s also invented an umbrella for wheelchair users and is discussing having a prototype built.
“I’ve always had a taste for inventing gadgets,” he chuckles. “The forehead rest is the latest thing, because my neck got too weak. I’ve never made any money out of inventions, but there’s always something that might. You’re only really an inventor if you invent something that sells. It’s like being a ‘resting’ actor, or an author – you’re only an author if you’re published.”
When Joyce laughs it’s not the kind of physical, heaving laugh that you might expect – it’s too exhausting. Instead it’s a mostly silent but animated wrinkling of his face.
The internet, through which those with MND can communicate, research and stay in touch with doctors, has become a lifeline. Joyce has met – and painted – Sarah Ezekiel, a former MND Association campaign face, but also others nearby.
“I met someone last week who is 40 and lives just a few miles away,” says Joyce. “He’s got children same age as mine, he’s in the same position but only found out a month ago. It broke my heart talking to him because he’s still in that period of utter devastation of not really understanding what’s happening; one minute you’ve got a future with a young family and the next you haven’t.”
Inevitably, Joyce will make friends only to see those with a quicker progression die.
The UK is among the leaders of research into this rare and devastating disease, and Joyce is using experimental drugs. “The UK punches well above its weight, we’ve been involved in several major discoveries,” he says. “I’m fairly confident they will make a discovery. Even if it comes tomorrow, there won’t be a cure on the market in time to save my ass, but if I can help bring it closer for others even a little, that’s something.”
Despite his losses, Joyce can still see a positive side to his predicament. “MND has brought me a lot closer to my family, a lot closer, and in a way we do live every day as if it were the last one. Within reason,” he chuckles.
But most of all, what he wants to do and see, challenges and desires in life have been brought into sharp focus, realising that the time to do things is Now. “Few people are given the opportunity to see that,” he reasons.
“I’m quite lucky because I have a life in my mind – I have the book I’m writing, where technology can help me continue, like Stephen Hawking. But if your life revolves around football or cycling, you might have nothing left,” he says.
“I’m lucky that I am able to be an optimist. Whether I’m still positive in two years time, who can say.”
For more information or to make a donation, see www.patricktheoptimist.org
[This article was originally published in The Big Issue, September 2010]