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  1. #1

    A Scot's Tourette Story

    Source: Timesonline

    John Davidson is sitting in a small, secluded dressing room in the bowels of Glasgow’s Royal Concert Hall when he blurts out that he wants to rape me. Built like a prop forward, he has already sworn repeatedly and in our time together I hear a lot of shocking things from Davidson. But his urge to violate me is not one of them.

    Davidson, 34, has an extreme form of Tourette syndrome, a neurological condition characterised by involuntary, repetitive movements and vocal outbursts. It leads him to swear and shout offensive comments. His life story sounds like a throwback to the Middle Ages. There was an attempted exorcism by religious fanatics dressed in white and carrying crucifixes. He has been attacked with bricks and crowbars. As a teenager, his doctor prescribed Valium injections every three hours, which turned him into a virtual zombie. Teachers took to shutting him in cupboards. Even now, he is regularly ejected from buses and trains.

    Tourette’s is a complicated, largely misunderstood condition and, it has to be said, a rather fashionable one. Marty, the character played by Jack Deam in the award-winning Channel 4 series Shameless, has full-blown Tourette’s. Dirty Filthy Love, the recent ITV drama starring Shirley Henderson and Michael Sheen, also explored the condition. Recently, Gwendolyn Whiteside, an American screen writer for Six Feet Under and Dawson’s Creek, spent a month living with Davidson at his home in Galashiels, where he works as the caretaker for the community centre. She plans to turn his story into a Hollywood movie. The Coen Brothers and Sam Mendes have reportedly expressed an interest in making it.

    Both Sheen and Deam have paid tribute to Davidson, who first came to public attention as a 15-year-old schoolboy in the 1989 QED documentary John’s Not Mad. Whatever the scriptwriters’ rationale for putting the syndrome on screen, Davidson’s motives are clear. He wants to gain acceptance and understanding for people with Tourette’s. Today, he is addressing one of the largest conferences on learning and disability ever held in Britain.

    Watching him from the front row is Dorothy Achenbach, the woman who has aided Davidson’s transition from a distressed teenager to a confident, articulate adult. Achenbach, a mother of four who was battling a diagnosis of terminal cancer when Davidson came into her life, doesn’t know quite how to describe her relationship with him. But you only have to see them together to realise she is something of a guardian angel.

    “The condition put a lot of pressure on my parents’ marriage,” says Davidson. “Mum and dad divorced when I was 16. Mum needed to move away to make a new life for herself. At the time I was very hurt. I was just left in limbo. I landed on Dorothy’s doorstep.”

    “John was in a terrible state when he came to me,” says Achenbach, a former psychiatric nurse. “His skin was dreadful and the medication he was on gave his face a rigid, mask-like appearance. He didn’t know how to laugh. He knew I had cancer. When he walked in, he blurted out, ‘Ha ha, you’re going to die.’ I just thought, ‘I can handle this.’”

    Davidson came for the weekend and never left. Achenbach and her husband, Chris, a music therapist, gave him the chance to live a normal life for the first time. At home, with his brother, William, and two sisters, Sharon and Caroline, there had been constant tension. “If anything went wrong, it was my fault,” said Davidson. “I became the scapegoat.”

    Davidson’s first symptom was rapid blinking, which started around the age of 11. Facial grimaces and violent twitching followed. Then came the foul language that, as puberty set in, became more overtly sexual in nature. His mother was appalled. “It was very frightening,” says Davidson. “Nobody knew what was going on. The more I did it, the more I was told to stop it, but the worst thing you can say to a Tourette’s sufferer is ‘Don’t do it’ .”

    Huge family rows followed. He was constantly in trouble at school. “I was locked in a cupboard,” he says. “One teacher almost ripped my ear off. Another made me stand on a table and tell the class that the reason I was making all these funny noises was because I was off my head.”

    With the coarsening of society and the growing acceptance of swearing on television, has life become any easier? “No,” he says. “I don’t want to be swearing. I hate using foul language. A lot of people still come up to me and say that it is disgusting.”

    Repeated visits to the GP failed to secure a diagnosis. When he developed a coughing tic, his tonsils were removed. It wasn’t until he had a full breakdown at the age of 14, crying and shaking uncontrollably, that he was admitted to Borders General hospital. There, a student doctor who had seen a similar case in Manchester mentioned the word Tourette’s.

    Diagnosis was a relief but only temporarily. “I was a guinea pig for years,” says Davidson. “I was on so many medications, the side effects almost killed me. I feel much of what was prescribed was to shut me up for a wee bit longer. At times I was like a zombie.”

    Involvement with the BBC documentary was a turning point and from then on there was more understanding within the community. But not all the attention was helpful. “Religious fanatics descended on the house,” says Achenbach. “They said he was possessed by darker forces.” It is a testament to Davidson’s spirit that he can see the funny side. “At one point we had three men in white robes at the door sticking crucifixes through the letter box,” he recalls. “I was cradling a dying rabbit that the dog had just attacked in the back garden. It was like something out of Monty Python.”

    Around this time, doctors discovered that the tumour on Achenbach’s liver was not cancer after all. “John and I recovered together,” she says. “I was in a wheelchair and John would offer to take me out for some fresh air. Then he would suddenly get a tic and wheel me in front of a bus. There were days when I quite felt like being pushed under a bus. We used to laugh about it. Learning to laugh has been one of the most important things for John.”

    Laughter was not always possible, however. In his late teens he was attacked with a brick by another teenager. His nose was broken and he ended up in hospital. A couple of years later two men were waiting for him as he walked the dog one night. One accused Davidson of calling his wife a whore. When Davidson explained that he had Tourette’s, he was attacked with a crowbar.

    On another occasion, John’s tic reaction kicked in as he was about to be attacked. He broke the other man’s nose and was charged with assault. “It went all the way to trial,” says Achenbach. “Eventually it was thrown out at the last minute when we found an expert who could explain his condition.”

    Changes in the acceptance of the condition have been small. The fictional television portrayals and The Boy Can’t Help It, a follow-up documentary about Davidson, have helped. He likes Marty from Shameless, who in addition to being a sympathetic character sustains a loving relationship. Davidson, too, has had a long-term girlfriend, but was badly hurt when the relationship ended.

    “I’m very emotional,” he says. “I hate aggression and I can’t watch war movies. I’m easily hurt. I have relationships, but I never let it go too far. I quite often pull back if I think it’s moving too quickly. I find it very hard to trust 100%.”

    Even within the medical profession understanding of Tourette’s can be poor. He rolls up his sleeve and shows me a wound he inflicted on himself when using a Stanley knife.

    “The blood was everywhere,” recalls Achenbach. “The doctor was Thai and his English wasn’t good. I told him John had Tourette syndrome. John told him he’d cut himself with a Stanley knife. The doctor kept asking, ‘Who is Stanley and why did he cut you?’ I just thought, if he doesn’t understand a Stanley knife, what chance do we have of explaining Tourette’s.”



    Steve

    Dum spiro spero....While I breathe, I hope

    Tourette Canada Forum

  2. #2

    Re: A Scot's Tourette Story

    This is so sad and it also makes me angry!

    Why do people get punished for being different and it makes me wonder are we living in the twentyfirst century or in the dark ages?

    He had to endure so much just because he had a genetic condition. I hope that I can make a difference for people living with TS. Steph

  3. #3

    Re: A Scot's Tourette Story

    Why do people get punished for being different and it makes me wonder are we living in the twenty first century or in the dark ages?
    I would like to think that more and more people and especially public institutions like those in the educational system are better informed and tolerant of people with disabilities or people who are afflicted with behavioral disorders or indeed psychiatric or psychological disorders.

    We see school systems providing special classes for kids who need extra consideration and employers providing accommodations for people with special needs.

    But unfortunately there are still narrow minded, uninformed or intolerant individuals who cannot deal with anything they find unusual. For these we can only pray, and go on to live our lives. We cannot change the behavior of others, so we have to find our own strategies to cope with the shortcomings of others as best we can.

    It's tough sometimes, but in tough times, we can take advantage of our support systems.
    Steve

    Dum spiro spero....While I breathe, I hope

    Tourette Canada Forum

  4. #4

    Re: A Scot's Tourette Story

    That is the main reason I am going to be a nurse.

    To help look after people that no one else cares about. Steph

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