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John's Not Mad


matty
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http://news.bbc.co.uk/1/hi/magazine/8070740.stm

 

Twenty years ago, John Davidson became the face of Tourette Syndrome, when a BBC documentary about his daily battles with the illness became a national talking point. His involuntary swearing made him an unlikely overnight star, but how has he coped with life since?

 

Few lives can have been so transformed by an hour of television.

 

When John Davidson sat down to watch the BBC's QED programme about his condition, John's Not Mad, in 1989, he was a lonely 16-year-old boy with such severe Tourette Syndrome that he was too scared to venture outside and face people.

 

Viewers of the documentary saw how his uncontrollable foul-mouthed outbursts and violent body jerks denied him a normal life. Some people in his hometown of Galashiels crossed the road to avoid him and told their children not to play with him.

 

But the next day, as he stepped out on to the street to nervously assess reaction to the programme, the same people he had been too embarrassed to face were stopping him to congratulate him on his bravery. Some even apologised for being unkind in the past.

 

"It was a total transformation overnight and life became so much easier," says John, now 37 and casting his mind back 20 years to the day his life started afresh.

 

"I started to make friends. I started to hang around the town and play football. I met a lot of good people, a lot of good friends who I'd known in the past but I felt I couldn't fit in with in the past.

 

"It was like I had proved to people that I wasn't mad and I wasn't a freak. It was a medical condition. I almost became overnight someone who I'd always wanted to be - a normal 15-16 year-old."

 

The programme's impact went far beyond that corner of the Scottish Borders. As John began his first day as a "normal" teenager again, at least in social terms, boys and girls of a similar age were mimicking him in playgrounds and classrooms across the UK.

 

The documentary became a major talking point and John went on to become a spokesman for a previously hidden illness, campaigning to educate people about it.

 

He left school a year later without qualifications, but he later got a job as a caretaker at a community centre and he has worked there for the past 19 years. It's a life he enjoys, with close friends and relatives living nearby, and as well as his Tourette campaigning, he does a lot of voluntary youth work.

 

But while society has generally become more informed about the condition, John believes the QED programme inadvertently helped foster a misconception that Tourette Syndrome is about swearing, although this only affects one in 10 people with the illness.

 

"People I know with Tourette's don't have coprolalia [involuntary swearing] but they suffer as much as I do."

 

John's condition encompasses a whole range of other symptoms, such as echolalia, which is repeating others' words, and sudden, violent body movements.

 

He has a severe form of obsessive compulsive disorder which he says is mentally exhausting. He walk on pavement cracks, touches lamp-posts and gets up six times a night to check the front door is locked.

 

He has an urge to touch men's crotches and women's breasts, but without any sexual motivation, he says. It's as if the self-control switch that others have in their brains is not working.

 

And there's an invisible side to the illness too. John is constantly resisting a destructive urge that haunts his thoughts. It could be to knock over a pint in the pub, smash a piece of crockery or jump in front of traffic.

 

He has to sit in the back of a car, with the seatbelt wrapped around his hands, because he would try and grab the steering wheel or assault the driver.

 

Shame

 

"I'm fighting against really bizarre thoughts that come into my head, sometimes quite visual things that are going to happen and I go through them in my mind and it creates panic attacks and anxiety attacks.

 

"So things that you see in the condition are not all there is. So much is invisible and going on within a person's head.

 

"That's the most difficult part for me to deal with because I feel so alone with it. It's very difficult to share with someone that you've just had a thought about going up and kicking a wee boy in the nuts because he's dropped a piece of litter."

 

Although public acceptance has made John feel much more comfortable in society now than he did when he was 15, day-to-day life is still very difficult.

 

He generally has less tics (outbursts) now than he did when he was 15, but certain social situations like the supermarket still exacerbate it. When he feels one coming, his stomach churns and he gets pangs of anxiety, before an eruption of abuse, that can be sexual, racist or personal.

 

The guilt, shame and embarrassment he feels has not diminished over the years. And he is constantly worrying about what people think of him, and apologising.

 

"I don't like upsetting people, I don't like offending people and that [embarrassment] is never going to go away because that's the kind of person I am."

 

He still faces ridicule and his favoured response is to strike up conversation and try to explain his condition. People who find his outbursts funny don't realise how hard these tics make his life, he says.

 

Many viewed the first programme as entertainment, rather than a documentary, he admits, but that perhaps was the only way awareness of the illness could be raised to the height it was.

 

Some days he has thousands of tics, and these outbursts have prevented him having a lasting relationship with a woman. The thought that he probably won't have children gets him down. But he has good days too.

 

"Even at work when there are people around me, if I'm having a good day, I'm happy as Larry and I go round whistling and I can focus 100% on what I'm doing. But on a bad day I want to hide."

 

Fishing, on his motorbike or walking in the countryside with his dog Tilly are the times when John's tic is diminished and he feels most at peace.

 

"There are no [social] boundaries and no limit to any way I need to behave. So the stress of trying to control my behaviour does not exist and the stress level is reduced."

 

He does relaxation exercises at home and he takes medication to alleviate the tics and the OCD, but he knows Tourette's is something that will always be with him.

 

And much as he hates the acute embarrassment and shame it causes him, he would miss it if it suddenly disappeared.

 

"Tourette's is part of me, it's who I am. I would find it very bizarre and strange to suddenly get up one day and not have tics. It would be wonderful but after a while I would find it really difficult and I would worry that it would change me as a person.

 

"I do believe that Tourette's has made me the person I am. I'm very understanding, I'm open-minded and I care about people - too much, most of the time."

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