In 2009, Simon Donald was asked to present a documentary about multiple sclerosis (MS) for the Wellcome Trust.
“They wanted a familiar face who had a connection with the condition,” says Donald, the comedian and co-creator of Viz magazine. “And as my mother had MS, they contacted me.”
Donald’s mother was a highly private woman, and he’d had very little opportunity to discuss her illness with her. He was keen to find out more, and to see how treatments had improved for those with the illness. But while making the film, he made a startling discovery – he, too, has MS. “The makers wanted me to be a guinea pig, to show what tests they do when someone is suspected of having it,” he recalls. “After we’d done them, the doctor looked at me and said he thought that I had a mild form of MS.”
To experience such a life-changing moment while being recorded on camera was “surreal”, he says. “But, to be honest, I wish that they’d had another camera to film the crew. The looks on their faces!”
Strange as the circumstances were, there was nonetheless a sense of relief. “I’d had some suspicions,” Donald says. In his early twenties, he had experienced a series of unexplained, seemingly unconnected symptoms, including temporary loss of vision in one eye, periods of crashing fatigue where he was unable to get out of bed, and pain in his shoulders.
“My doctor clearly thought I was a hypochondriac, because often, by the time I saw him, the problem would have passed,” says Donald, now aged 50. “We were always told not to worry about MS because it wasn’t a hereditary condition. And it’s not – but you are more likely to have it if you have a parent or sibling with it, which I didn’t realise.”
The symptoms disappeared when he was 22, and Donald enjoyed good health for many years, until 2004, when he was tackled while playing in a charity football match and landed on his shoulder. “From that moment onwards, whenever I moved my head forwards, my hands went into this fierce pins-and-needles thing. I still hadn’t put two and two together.”
Much later, he would learn that this was one of the first symptoms that his mother had, after giving birth to her first child, Steve (she also had another son, Chris, with whom Donald set up Viz).
“People had told her that it was trauma from the birth,” Donald says. “But apparently, she said to her sister, ‘Imagine if it never went away.’ I think she already had an idea that something was wrong.”
There are more than 100,000 people living in the UK with MS, an autoimmune condition that causes the thinning or loss of myelin, the protective coating around the nerves. Symptoms include loss of vision, balance problems, lack of bladder control, slurred speech, fatigue, and cognitive problems. It is a complex condition, caused by a combination of genes and environmental factors. Donald has the most common form – relapsing and remitting MS, where people have distinct attacks of symptoms, which then fade away either partially or completely.
Women with MS are known to be at raised risk of relapses after pregnancy, probably because of hormonal changes, and Donald’s mother Kay’s symptoms escalated after he was born. “She was unable to walk properly after my birth,” he says. “So I grew up feeling partially responsible for the fact that she was disabled – probably because everyone kept telling me that I shouldn’t feel responsible. My mother used to call me her consolation prize, which always felt like a bit of a mixed blessing.”
When Donald was 10, his mother had another relapse, which resulted in her using a wheelchair for the rest of her life. Living in Newcastle upon Tyne in the 1970s, the family faced huge adversity. Donald remembers his father having to call the traffic wardens’ office in Newcastle in advance if he ever wanted to take his wife into town. If the family ever needed to take a long-distance car journey, they had to call all the service stations on the route to see if they had disabled access.
Today, he wishes that the family had been more able to talk to each other about his mother’s condition. “It wasn’t really explained to us as children, and that made it difficult,” he recalls. “My mam and dad both struggled to talk about things, but they had a great sense of humour – we all watched Monty Python and Laurel and Hardy together – and that was how we coped.
“So it was perfectly all right to make jokes about the disability. I know it sounds terrible now but… I used to refer to my mam as Davros [the evil and physically challenged character in Doctor Who].”
But there are painful memories, too. “I don’t want to sound like I’m whingeing, but I never got cuddles; because my mam couldn’t walk, I was never carried. I remember when I was six, my dad told me she couldn’t come up at night to read me my bedtime story any more because climbing the stairs was taking up too much of her energy. I was given options, like having my bedtime story downstairs. But it wasn’t the same because my brothers were around.”
After a slow deterioration in her health due to MS, Kay died aged 60, when Donald was only 30. His own diagnosis has given way to a new understanding of what life must have been like for his mother. “She was an amazing woman. I remember her falling asleep in the afternoon, listening to the radio, but in the mornings she would be up making our breakfast and doing the washing. She did everything a mother normally does. Considering that she was also making soft toys to sell from home, and campaigning with a pressure group for disabled women’s rights, she coped with a lot. I now think about what she must have been going through emotionally – how worried she must have been.”
And what did she think of Viz? “She was very proud of our artistic abilities. The fact that we were using our artistic abilities to make knob jokes, I don’t think she was particularly pleased with.”
Simon’s MS is in a “benign” state – he is not in need of any drug treatment, and aside from occasional bouts of fatigue, and pain in his feet, he says that he feels fine. But the condition is changeable in nature, and he avoids the known triggers – stress, for example. “If I get too hot, or too stressed, I seem to lose the ability to think straight and to speak properly,” he says. “Considering that the job I do involves going on stage in very hot, sweaty rooms, and having to remember your set, it’s probably the worst thing I could do.” He has found ways to work around this – playing a character who carries a clipboard, for example – but is also starting to “cherry-pick” his gigs.
He now splits his time between the UK and Italy, where his girlfriend lives. “The lifestyle is good, the diet is good, I don’t get too stressed, and there’s plenty of vitamin D,” he says (low levels of the vitamin, which the body makes from sunlight, have been linked to MS).
Having watched his mother battle MS for 30 years, and lost his brother Steve to cancer in 2008, Donald has resolved to be grateful to be feeling well. “When I was diagnosed with MS, I remember that the doctor told me that there was no other condition where having the correct mental attitude was so important. My symptoms are all so minor that I hardly notice them.”
He has also witnessed the transformation in rights and access for disabled people. “Today, a disabled person can come to something like a comedy venue and there’s a lift and a ramp and a disabled toilet. There are some brilliant disabled comics – one guy, Lee Ridley, has cerebral palsy and does his entire set through an iPad. I wish my mam could have seen it.”
For information, call the MS Society helpline on 0808 800 8000 or go to mssociety.org.uk
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