It's doubtful whether Bill Wolsey would have recognised presenter Christine Bleakley on Saturday night as she sipped cocktails in his luxurious Champagne Bar. He knows who she is, but the owner of Belfast’s Merchant Hotel has a recurrent and very inconvenient problem with double vision.
“You could walk past me tomorrow and I wouldn't recognise you,” he says. “It happens a lot. Then I'll be wondering if I've ignored someone — and they'll think I'm some lunatic staring from the other side of the room.”
We're in a lamp-lit enclave off the bar in the exquisite Cathedral Quarter hotel in Belfast, the jewel in the crown of Bill's business empire, talking about the muscle-wasting condition which put an end to his budding football career as a teenager. Myasthenia killed the billionaire Aristotle Onassis, but this hugely successful local entrepreneur — who has just made the Queen's Birthday Honours list — won't let it beat him.
The son of a socialist working-class couple (“Dad was a fitter; mum worked everywhere from laundrettes to offices”), Bill has the most severe form of the illness, myasthenia gravis, an auto-immune disorder which prevents the antibodies that fight infection from functioning, and attacks the communication system between the brain and muscle movement.
The spry 60-year-old has the added complication of Ocular myasthenia, which causes the double vision in his bright, wide-awake blue eyes. The occasional blurriness hasn't given him the typically droopy peepers of fellow sufferers like Onassis, but it makes hazards out of everyday things like patterned carpets.
The multi-millionaire and philanthropist, who grew up in Ballysillan in north Belfast, doesn't have to negotiate any fussy Westminsters in the tasteful hard-wood and marble-tiled floors of the Merchant, where every nook and cranny is a work of art. But the surprisingly down-to-earth proprietor has no jurisdiction over the kerbs outside – which can become obstacles of the highest order.
Such is his unsteady gait at times, many onlookers have presumed him to be drunk or high on drugs.
"Sometimes it's very hard to lift my foot over the kerb and I stumble," he explains, raising his left leg. "This side is most affected. I first noticed it when I was sixteen-and-a-half years old, when I lost the power to kick a ball. Then some mornings I just couldn't get out of bed – I thought, 'What the hell is wrong with me?'"
His GP had no idea either. The debilitating lack of energy might have been put down to ME at the time, but few had heard of the severe fatigue syndrome back then. Various local consultants ruled out multiple sclerosis, which carries similar symptoms, but no-one identified myasthenia until Bill ended up in hospital in London.
"I was sent all over the place – nobody knew what was wrong," he recalls. "I had two eye operations but got the problem back again. The eye surgeons here were convinced it wasn't mysathenia but the specialist in London said straight out, 'Are they mental? No more eye operations for you – you definitely have mysathenia.'"
The diagnosis came when Bill was 20 and training at Highbury for Arsenal. He was scouted as a teenager but had to bow out due to his illness. It was a crushing blow, but he claims he wasn't heartbroken. "There were 12 from 14 cut in the first year; I was lucky to be one of the two chosen," he shrugs. "I was disappointed but I wasn't playing well anyway – I wasn't good enough. I just got on with it. I put a patch over one eye. As a teenager you just keep going. Stoicism runs in the family."
Approaching 61 in September, this brilliant businessman still has the compact, wiry build of a footballer – he looks a bit like the late Bobby Moore and has a healthy tan, a side effect of myasthenia, which, like Addison's disease, can turn the complexion orange in some cases.
He dresses casually, albeit in what look like designer duds, and although he lives in a mansion outside Holywood (with second wife, Petra, and their three-year-old daughter, Caoilinn), he retains the unaffected accent and vernacular of Ballysillan.
He returned to north Belfast when his fledgling football career came to an end, and got a job as a compositor with the Newtownards Chronicle – finicky work which, unfortunately, required good eyes.
Unable to progress in the printing world, he turned his attention to the hospitality industry and gradually worked his way through the ranks of various companies, from Pizza Hut (the first in London), to the Holiday Inn and the Queens Moat House chain, where he was a senior manager.
This gave him the opportunity to put some money aside to achieve what had become a burning ambition: to own his own pub. With some financial help from his parents, and his own savings, he was able to put down a deposit on what was then The Trident Bar in Bangor.
He re-named it The Sportsman's Inn and, thanks to a great deal of hard work and perseverance, it became a prodigious success. (Now re-christened Wolsey's, the bar and restaurant is owned and run by Bill's brother Martyn Wolsey.)
Back in his Sportsman's days, Bill was married to first wife, Linda, the mother of his two sons, Conall (30) and Luke (27). (He remains good friends with Linda, who often babysits young Caoilinn). With the help of steroids, he was able to work full-time and keep his condition under control and away from his children, but when he hit his late 30s, the medication stopped working.
"Your swallow reflex is affected by myasthenia, so my weight went down to under 10 stone," he says. "I went from one tablet a day to 11. It was horrible for my sons to see me choking at times, needing to get the tablets down.
"I had a very bad cold in Spain once and couldn't swallow, and my nose was completely blocked. I knew I was going to die; I couldn't breathe but by fluke, the lady we were staying with had a helicopter pad and we were able to phone for paramedics to fly in.
"It was like Pulp Fiction when they inject Uma Thurman with a shot of adrenaline to the heart, only it was a steroid in my case. I was on the floor with air getting in through one nostril – terrifying. I was fighting for air. I quickly recovered after the shot, though."
One for the memoir, that. I'm so agog I don't want to interrupt when my pen runs out of ink, but have to admit defeat eventually. In an instant, he's up on his feet to fetch one from the bar beyond the tonne-weight door, hands-on guy that he is, and has always been. Despite his condition and the health scares it has brought, innovative Bill was ever determined to expand his business empire, the Beannchor Group, named after the Gaelic term for Bangor, his home for many years.
The company includes the multi-award winning Merchant and the restaurant chain, Little Wing Pizzeria, which has developed a cult following with its quirky style and high-quality menu. (Spreading the boss's good taste, Beannchor also quietly owns a stable of 47 leasehold pubs, bars and restaurants, which are acquired strategically, thoughtfully refurbished and placed under the care of very carefully vetted tenants).
An impressive portfolio – but where on earth did he get the energy to do all this?
"Stronger steroids, basically," he dead-pans. "I went on a bigger hit of drugs after Spain and it turned my life around. But then I couldn't sleep and my weight went up – I couldn't stop eating. I'm supposed to follow this very healthy diet but I'm terrible – terrible – when it comes to food. It's not good to be on steroids long-term but my sight stabilised and I got back to playing five-a-side football."
His energy levels can still wane easily, however. After recounting a hair-raising story from his days at the Sportsman's Inn (which he doesn't allow me to put into print), he flags slightly, and when he explains that he limits his social life to three good friends he has known all his life, I realise he must find being interviewed tiring.
"Slurring is a problem when I'm tired – it can be really bad," he concedes. "I don't drink very much but people can think you're drunk, same as when you're tripping over the kerb. I couldn't have done a quarter of this interview in the past and I still have to be really economical with words as much as possible sometimes. I was doing a talk in a school and after five minutes, I could feel it coming on, and my tongue going lax, and I had to stop.
"Don't get me wrong – mysathenia is manageable, but if I'm in bed and have to move the pillow, I have to sit up and use my hands and teeth to pull it round, because from certain angles I just can't manoeuvre myself, because of the weakness. But don't make me sound like a big moaner! I have a very high pain threshold – I signed myself out of the hospital after that incident at the Sportsman's against medical advice. It's not that I'm a workaholic – I do work hard, but I just can't abide hospitals."
With that parting shot he darts off to have his photograph taken and refers me to his PA, Gillian, for any further details. She tells me she has never been bored listening to her boss in the 17 years they have worked together. I believe her. If only he'd let me tell the story about the Sportsman's and the hospital ... but maybe he's keeping that for his autobiography. If he ever gets round to it, it will be a must-read.
What are symptoms of myasthenia?
- Bill Wolsey is working with the Myaware charity to raise awareness of myasthenia, an auto-immune disease in which the nerve signals are attacked and damaged. As a result, there is a breakdown between nerves and muscles and often a loss of effectiveness in the legs, arms and eyes. Symptoms vary from drooping eyes to slurred speech and muscle collapse
- An estimated 10,000-12,000 people in the UK and Ireland have myasthenia but at the moment there are no accurate published figures. They include some children from Northern Ireland with Congenital Myasthenic Syndrome, which can be a devastating illness, although symptoms are different for each patient
- Myaware regional organiser Jan Beaumont says: “Because there is a low-level of awareness of myasthenia in the UK and Ireland, we find that people presenting with symptoms are often misdiagnosed with conditions such as ME. Sometimes it can take months — or even years — before it is medically established that they suffer from myasthenia.”
- Myaware provides a free phone helpline, GP and patient information packs, as well as regular information conferences and a quarterly newsletter. Myaware Belfast is run by sufferers of myasthenia and their carers. Their regular meetings are attended by members who have suffered from myasthenia for years and by newly diagnosed patients. It is a valuable opportunity for sufferers to share their experiences and gain support from other members of the group
- Myaware has a useful and informative website www.myaware.org, which has lots of information and advice suitable for patients, families and for medical practitioners. The freephone helpline is also available for support, tel: 0800 919 922