Patrick Joyce, the eternal optimist

Patrick Joyce, photo by Chris Lucas - www.arunproductions.co.uk
Patrick Joyce, September 2010. Photo: Chris Lucas - www.arunproductions.co.uk

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]

 

Gypsy woman and the road less travelled

Maggie Smith-Bendell, photo by Chris Lucas - www.arunproductions.co.uk

Italy have them rounded up and fingerprinted, France is to eject thousands, and more face discrimination and even violence in Eastern Europe or deep-seated prejudice in the West – the treatment of the Roma in Europe is still a black mark on a world that has largely changed for the better.

While Romani Gypsies have been present in Britain for 500 years and even longer in Europe, they have had little but the harshest of treatment. Henry VIII ordered them out on pain of death, hundreds of thousands died in the Holocaust, and now our bureaucratic rulers have tried a death by a thousand legislative cuts, making travelling life difficult in an effort to assimilate them. While in the Middle Ages the Romani were cast as witches, Satanists or child-snatchers, these days they’re more likely to be stereotyped as benefit scroungers or thieves – each equally wrong.

Maggie Smith-Bendell is a Romani Gypsy born in 1941 in a pea field in Somerset and raised in a horse-drawn wagon in the southwest. At the age of 69 she has written a memoir, Rabbit Stew and a Penny or Two, recounting her upbringing in a way of life that has all but disappeared.

While Maggie’s story is filled with bucolic tales of country life, of fireside chats, frosty spring mornings, and rabbit stew, it relates no small amount of hardship, ignorance and prejudice, from the 1940s up to the present day. Only later did she realise the extent of the discrimination she faced, and in her efforts to counter it found herself the unofficial cheerleader for Travellers traversing the planning system in an effort to find a home.

Born the second of eight children to Lenard Smith and Defiance (known as Vie) Small, Maggie lost a brother and an aunt before she was 10, and would lose her dear elder brother Alfie at 46 and youngest sister Holly at just 25.

It’s notable how few dates the book contains except births, marriages and deaths. “We didn’t really live by time, only the seasons.” Maggie says. “In spring we started picking snowdrops and cowslips, then into the pea picking season, and then we’d travel up to Ledbury in Herefordshire for the hop picking. Dates didn’t really mean a thing to us.”

Following the seasons around the West Country she attended as many as 50 schools, in almost all of them meeting only with outright hostility from their classmates, teachers and parents.

“At every school we would end up in the corner with no pencil or paper because they knew we weren’t going to be there long,” she says from the front of her car in a hospital car park in Bristol, where she has brought her husband of nearly 50 years, Terry. In retrospect it seems less odd conducting an interview in a vehicle considering how little of her life has been spent in buildings.

“We knew we weren’t wanted, and we just wanted to run around in the fresh air,” she recalls. They already had an education of sorts: “We couldn’t read or write, but we could look after ourselves in the countryside, find our way around with needing signposts.”

The barriers between gypsy and ‘gorgie’ (the Romani word for house-dwellers) remained until she and Alfie attended a school in a tiny village near Newton Abbot.

Maggie recalls: “From the first day there we were integrated and part of the school. It sounds silly now, but at all the kids had dap bags, drawstring bags for their things, and they gave us one. Made us feel really included.”

But she grew accustomed to village children and non-travelling people. “The children used to follow us home to the moor, we could teach them games, show them things in hedges, and they’d invite us back to their homes for a birthday party.”

By the time she was old enough, she had already made her mind up not to marry a Traveller man. “They can be very controlling,” she says, recalling how her mum – defiant as ever – wore make up, causing raised eyebrows or worse. “I took after my mum and I was told by boys, I’ll take you to the pictures but you’ll have to take off that makeup and change your clothes, and I’d think, I’m not going anywhere with you.”

Maggie, then as now, is not one to be easily controlled. Her hair may have whitened from the black of her youth, but her eyes have lost none of their sparkle.

Maggie Smith-Bendell. Credit: Chris Lucas - www.arunproductions.co.uk
Maggie Smith-Bendell. Credit: Chris Lucas

In 1962 she married Terry, a gorgie, and soon converted him to her travelling ways, dividing their time between houses and the road. After her father’s death in 1998 they decided to settle on his land near Bridgwater, only to find the village – who had known her family for 25 years – suddenly up in arms against them. “It felt like the old life was put in a box when he died. We’ve not done any picking or scrap collecting since then. I took up a new life planning when I moved onto the land,” she says. “I hadn’t thought about it before, but I realised when we put in a planning application that we were treated like muck, put down and degraded. I couldn’t believe people could turn on you so quick.”

The villagers – who had spent decades buying Christmas trees from and selling scrap to her father – now raised £30,000 to buy her out, which she refused.

With the help of solicitor Brian Cox, she won planning permission for her land. “I should have been overjoyed, but what I had been through had taken its toll,” she writes. “I had been degraded in public, in the press and in my local area just for being born a Romani. It took a long time for me to get over it.”

Maggie and her brother Robert set up the Romani Gypsy Council to help other Travellers live on their own land. Their tools are a European court case, Buckley vs UK, which found in favour of a Romani evicted from her land on which she was living, and Circular 1/94, a Department of the Environment guidance note from 1994 which recommends councils encourage Travellers to provide for themselves on private land, are their tools.

Until it was repealed in 1994, the Caravan Sites Act 1968 required councils to provide sufficient sites, but few did so, leaving an estimated shortfall of 4,000 pitches. Those that exist usually adjoin industrial sites, motorway flyovers and rubbish tips. “Everywhere you’d never want to live,” Maggie states, “Concreted-over old cemeteries, even.” But asked to fend for themselves, 90 per cent of planning applications from Gypsies are rejected, compared to the norm of 20 per cent, so many now move onto their land first and apply – legally, albeit sometimes controversially – for retrospective planning permission.

This has found Maggie notoriety, described as “grandmother of the land grab” or “the name that strikes fear in to council officials.” She laughs: “That cracked me right up. For hundreds of years we’ve had to bow down and hide, and yes sir, no sir. Now I get out there and tick boxes, discuss planning issues and they call me names. If there’s a problem, we can sort it out. I won’t be pushed off.”

And in many areas, planning difficulties are not limited to Travellers. “Somerset is crying out for affordable housing, but when applications go up on the noticeboard, my god, you’d think there’d been a murder. Villagers or Travellers, it’s as if people think – I’ve got a home, bugger you and your children,” she says.

Will the Romani Gypsies ever settle for good? “I don’t think so. We are so steeped in tradition, in 100 years our homes will still be bases from which to travel. You can’t keep a duck from a pond, and you can’t keep a Traveller from the road.”

Rabbit Stew and a Penny or Two is published by Abacus on September 19, at £5.99.

 

[This article was originally published in The Big Issue, September 2010]
…and here’s the other Gypsy Woman, because I can’t resist.