I’m not sure if there’s ever a ‘good’ way to be told you have multiple sclerosis, but if there is, I think most people would agree that having a film crew in the room - and in your face - would not be it.
That’s the situation comedian Simon Donald found himself in when he was diagnosed with the condition five years ago. The now 50-year-old, who co-founded cult comic Viz with his brother Chris in the late seventies, was presenting a documentary for charity, The Wellcome Trust, which was aiming to lead people through the process a person would go through if it was suspected they had MS.
Simon had been approached to present it because his mother had lived with MS since he was born in 1964.
“You couldn’t really have made it up,” said Simon yesterday, speaking from Italy where he lives with his girlfriend when he’s not back home on Tyneside.
“I turned up to get the results of the tests with a film crew and then they were telling me that I did actually have MS. It was pretty surreal.
WARNING - Video contains language some may find offensive
“We were in St Barts Hospital, which is in the east end of London, so we thought it seemed fitting to go to the Blind Beggar pub, where The Kray brothers apparently did some of their business, and get drunk,” he laughed.
“I think it was all a bit strange for the film crew. We’ve stayed in touch.”
It was in November 2009 that Simon was diagnosed with relapsing remitting MS, the most common form of the condition (around 85% of the 100,000 UK sufferers have it), where sufferers experience distinct episodes of symptoms, which then either fade partially or completely.
“And I’m lucky in that I have the most minor form of MS that you can have with a diagnosis.” Simon said looking back, there had been signs over the years that something may have been wrong, but the symptoms seemed unrelated and there were long periods of time between them. “There were probably about three or four times over the years,” he said. “I lost my sight in one eye temporarily when I was 21. Then years later I suffered with pins and needles in my hands after I fell awkwardly during a game of football.
“Of course with hindsight, it’s very easy to put these kinds of down to the MS. Obviously my mam had lived with MS all my life, so I was aware of the symptoms - and I suppose when I was doing the film, and having the tests, those thoughts of ‘what if’ had occurred to me.
“But no more than all the other thoughts which occur to you at any given moment during the day and come to nothing. I certainly wasn’t expecting the diagnosis at all.”
Although Simon told his family and close friends straight away, he hasn’t spoken about it widely during the five years since.
“It’s not like I have been trying to keep it a secret or anything,” he said. “And the footage was on YouTube anyway! Just type in ‘Simon Donald MS’ and you’ll find it I’m sure.
“The documentary was put on hold as it had only been partially funded, so it never went out anywhere, but that clip is up there.
“It was funny, I met my girlfriend Susan, after I’d been diagnosed. It was hard realising that I was going to have to tell her when we’d been together a while. I was a bit nervous about it... but when I eventually did, she said she’d already seen it on the internet when she’d Googled me,” he laughed.
That’s dating in the 21st century for you.
Although he has obviously had to live with his diagnosis for the past five years, Simon said he doesn’t feel like his condition intrudes too much on his life.
“I have my annual check ups at the RVI and I have a medical professional I can call if there’s anything in between, which is brilliant and so much of a better support network than my mam had.
“Other than that though, it doesn’t really have that much of an effect on my life. The main thing I’ve noticed is that since being diagnosed,” he continued. “I see things differently.
“I do have these periods of fatigue, which, had I not been told I had MS, I may have put down to overwork. Now, if I feel knackered, I let myself accept that I’m knackered.
“Of course I might just be knackered because I’m 50,” he laughed.
Simon said although he remembers his mother’s illness, he also remembers that she did everything you would expect a mother to do – and more – throughout his childhood.
“She had been a display artist for Fenwicks, but she gave that up when she got married and had kids,” he said.
“She did loads of home improvements as well as looking after us. Painting, decorating, woodwork and that kind of thing. Then she set up her own toy manufacturing business from home.
“She was also the secretary of the Disablement Income Group and then became involved with the MS Society. She had quite a life.”
Having moved back to Newcastle after many years in London, Simon will be back on Tyneside next week for three comedy gigs at The Stand Newcastle on November 6, 7 and 8. He’s also developing a new character comedy show for 2015, which he says may touch on his MS diagnosis.
“In a funny way though. Otherwise what would be the point?”