John still swears he’s not mad

IT is almost impossible to discuss tourette’s syndrome without recalling the young scottish boy whose obscene

outbursts were painful and occasionally comical to watch.

His name was John Davidson and the 1989 BBC documentary, John’s Not Mad, was ground-breaking in tackling the mysterious illness that affects more than 300,000 people in Britain and for so long had been ignored and misunderstood.

Now aged 37, John will be on our screens again this thursday as he revisits those early days and speaks eloquently of the loneliness of the illness and his longing for a family in BBC1’s tourette’s: I swear I Can’t Help it.

With footage from that very first documentary John reveals how as a young man he would approach a girl, ask her for a drink and then either shout an obscenity  or spit in her face.

Needless to say most did not stick around for long.

John’s symptoms began with rapid eye blinking when he was 11.

They now include coprolalia (the involuntary and repetitive use of obscene language which, contrary to public perception, only affects one in 10 sufferers), echolalia (the repetition of another person’s words) and palilalia (the repetition of his own words) as well as involuntary physical movements and Obsessive Compulsive Disorder.

He is on two types of medication for the tourette’s and the OCD.

John, who has worked as a caretaker at his community centre in Galashiels in the scottish Borders for the past 19 years, concedes that a partner would have to be pretty special to deal with his symptoms.

“I have had girlfriends but it has been difficult for them to understand the condition fully,” says John, who left school with no qualifications as the educational system struggled to cope with his condition.

“I would need to meet someone who accepts me totally for who i am. i do feel a bit envious of my brothers and sisters who have settled down and have families.

"I think i would make a good father and I love children but i worry that there is a risk that if i had children, in particular a boy, they could also inherit tourette’s. I know how hard it can be.”

Although he will not elaborate, he admits that as an isolated and bullied teenager (he was locked in a cupboard by some teachers) he did want to kill himself but today his energy and optimism is infectious.

“I sometimes think what would i be without the tic,” he says. “I think i would miss it but sometimes a huge part of me wishes just for one day, one measly day, to get up and not have any tics and not have to worry about people staring at me but i believe strongly that i was given tourette’s for a reason.

“I am articulate and honest about it and I want to raise awareness.”

While John's life has improved immeasurably since those dark teenage years, the film John’s Not Mad thrust him

into the public eye, making him the unwitting “face” of tourette’s.

Does he ever regret agreeing to that documentary? “No, i’ll never regret doing it,” he says, “It helped immensely. I really felt i needed to do it. It was a way of showing those who didn’t believe that i had a condition or bullied me that I was not a bad person and that I really was suffering from a recognised illness. I still feel guilty after an outburst but

people know who i am and it is easier now.

“People will still come up to me in the street and shake my hand and say ‘well done’ which is fantastic but there will always be  the odd few who will shout out something or taunt me.

I’m glad to say I get more encouragement than nasty comments. "I admit it is a fine line between informing and entertaining. Some people will kill themselves laughing at the condition but perhaps among the laughter there will be 

a little bit more understanding of the illness,” he says, adding he can’t play cards or charades as he will always shout out his hand or the answer.

“The only thing i do regret is that i do not have quite as much privacy as i would like.”

So where does he see himself five years’ time? “I would love to be settled, married with a family,” he says without hesitation. 

“I would also love to study psychology and write a medical paper about my experiences of tourette’s.”

For the time being, John will continue happily with his gardening, his fishing and his off-road motorbiking.

“When i am feeling a bit down and a bit sorry for myself i do stop myself and think: ‘look at what i have achieved,’ ” he says. 

“I have got my house, i have got my garden, which i love. I have got my job, I have got my dog Tilly. To be honest i have a good quality of life really.”

Tourette’s: I Swear I Can’t Help It, BBC1, Thursday, 9pm.