Nick van Bloss on living with Tourette's syndrome
Every minute of every day, Nick van Bloss involuntarily yelps, shakes or blows raspberries. Tourette's syndrome made his life a misery - until he found the one thing that would calm him
Tuesday 18 April 2006
I sat bare-chested in the plastic hospital chair and shook my head violently from side to side; my eyes rolled back hard in their sockets as I painfully jerked my head towards my right shoulder; a forceful nodding of my head accompanied some forearm flexing that made my lower arms rise a little; I yelped loudly several times, not in pain, but because my brain commanded me to do so, and a final flourish saw me punch myself viciously in the stomach. The doctor, a paediatric neurologist, looked at me with a suspicion verging on scorn, and I returned his look with a pleading one of my own: Please help me. Please just make it stop.
I was seven and my little world had turned upside down. The doctor prescribed Valium, and I trundled back home fingering the bottle of little white pills while praying they would hold the miracle cure.
It had all come on so suddenly. There was no obvious cause. I simply developed a head-shaking tic, one that, as the weeks progressed, greedily seemed to recruit other symptoms to join it on its course of taking over my life and turning me from a confident boy into a confused, gyrating, ticcing and verbalising freak.
My parents carted me from family doctor to hospital specialist in the hope of some enlightenment. It came in the form of a verdict that was to label me for 14 years: bad nerves - attention seeking. Of course! How silly of us all not to have realised that I was simply putting on an act and causing myself physical pain, embarrassment, exhaustion and alienation.
The luxury of being able to brand myself came when I was 21, on deciding, now as an adult, to start seeking some answers. It was not such a futile journey this time round, and I was led to a neurologist who stated that I was suffering from Gilles de la Tourette syndrome. I was ecstatic at first. I had a real condition. I was believed. But then, as I began to research the condition, my initial ecstasy evolved into anger.
Tourette's syndrome had been in the ambit of medical information since the late 19th century. The more I read, the more I realised that I had always displayed textbook symptoms. So why had every paediatric neurologist I had seen all those years ago failed to detect it? I've long given up waiting for the answer.
The trademark bodily tics range from simple flexing, grimacing or shaking movements, to more complex, often extremely painful contortions, repetitive touching of things or people, jumping, self-harming, and countless others. The vocal tics can range from small, meaningless but abrupt noises, to startling and often deafening variations on a yelping theme. Some Tourettists mimic sounds or words they hear, and some do that thing for which Tourette's has become so famous: they swear. But most Tourettists do not swear. Their main struggle is trying to tame the vocal and bodily tics.
There are no drugs specifically designed for Tourette's, but a number of medicines, potent neuroleptic antipsychotics, do seem to help eradicate some of the violent tics. Ironically, though, these drugs not only tend to almost erase the patient's personality, but can also have serious side-effects, leaving an irreversible tremor called Tardive Dyskinesia. The course of taking a medicine that might help my TS, but could afflict me with something equally disturbing, is not one on which I've ever been willing to embark.
Living with TS can certainly be a punishing ride. I tic approximately 38,000 times a day. Not a moment goes by when there is not some muscle in my body either delicately ticcing away, or, as is more common, going for it hammer and tongs. I vocally tic practically each time I exhale and, at certain points during the day, I'm compelled to let rip with various mega-loud yelps, which tend not only to startle me, but everyone in my vicinity. I ooh and I ahh, I spit and I smash my jaws together, I flex, shake, contort and nod, I blow comical raspberries, some small, some huge, and I touch things and people. I don't swear out loud, but sometimes I have a dreadfully abusive script going in my head. With some people, I salivate as I'm compelled to spit in their left eye, and I go through agony as I fight the urge. It's a constant battle, I'm given no time off.
I accept myself now. It took a long time to get here, and I had to overcome a lot of self-hate and confusion, but I made it. It wasn't always a pleasant journey though. I was bullied at school. I was spat at, beaten, mimicked and excluded. I then found love in the form of music - the piano - and I excelled. Finding solace in my music, I practised every moment I could, the beauty of the sounds acting as a panacea to the ugly ills I faced in the outside world. Going on to study at the Royal College of Music in London saw me develop the dream of being a concert pianist. While ticcing and gyrating, I won prizes.
Although I still feel trapped in a body over which I have no control, people who know me accept me as a ticcy being and even love me for it.
'Busy Body: My Life With Tourette's Syndrome' by Nick van Bloss is published by Fusion, priced £10.99, www.fusionpress.co.uk
What is Tourette's?
Tourette's syndrome is a genetic neurological condition that is characterised by bodily motor tics (sharp, repetitive movements) and vocal tics (the repetitive uttering of noises).
The condition usually starts in childhood and is likely to continue throughout the sufferer's life.
Tourette's may also include obsessive compulsive behaviour, attention deficit disorder and hyperactivity.
Although recent research seemed to identify various genes linked to the syndrome, there is still no precise understanding of exactly what causes Tourette's.
It is thought that abnormalities in brain messengers called neurotransmitters could be to blame, but there's no hard evidence.
One in a hundred children is known to suffer from Tourette's syndrome.
There is no cure. Most sufferers will not require treatment, as their symptoms will only be mild.
Tourette Syndrome (UK) Association: www.tsa.org.uk
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