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

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,

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:

Left: An illustration of the original Jim Crowe, played by TD Rice Right: A Couple dressed as Ray and Janay Rice

By performing as African Americans or Indians, white people get to play act a kind of 'imaginary liberation', writes Michael Mark Cohen

Life and Style
ebooksA superb mix of recipes serving up the freshest of local produce in a delicious range of styles
Life and Style
ebooksFrom the lifespan of a slug to the distance to the Sun: answers to 500 questions from readers
Arts and Entertainment
Hand out press photograph/film still from the movie Mad Max Fury Road (Downloaded from the Warner Bro's media site/Jasin Boland/© 2014 Warner Bros. Entertainment Inc.)
films'You have to try everything and it’s all a process of elimination, but ultimately you find your path'
Arts and Entertainment
Imelda Staunton as Dolores Umbridge in the Harry Potter films

New essay by JK Rowling went live on Pottermore site this morning

Russia Today’s new UK channel began broadcasting yesterday. Discussions so far have included why Britons see Russia as ‘the bad guy’

New UK station Russia Today gives a very bizarre view of Britain


Top Gear presenter is no stranger to foot-in-mouth controversy

Arts and Entertainment
Keira Knightley and Benedict Cumberbatch at the premiere of The Imitation Game at the BFI London Film Festival
filmsKeira Knightley tried to miss The Imitation Game premiere to watch Bake Off
Latest stories from i100
Have you tried new the Independent Digital Edition apps?

ES Rentals

    Independent Dating

    By clicking 'Search' you
    are agreeing to our
    Terms of Use.

    iJobs Job Widget
    iJobs General

    Mobile Developer (.NET / C# / Jason / Jquery / SOA)

    £40000 - £65000 per annum + bonus + benefits + OT: Ampersand Consulting LLP: M...

    Humanities Teacher - Greater Manchester

    £22800 - £33600 per annum: Randstad Education Manchester Secondary: The JobAt ...

    Design Technology Teacher

    £22800 - £33600 per annum: Randstad Education Manchester Secondary: Calling al...

    Foundation Teacher

    £100 - £125 per day: Randstad Education Chelmsford: EYFS Teachers - East Essex...

    Day In a Page

    The drugs revolution starts now as MPs agree its high time for change

    The drugs revolution starts now as MPs agree its high time for change

    Commons debate highlights growing cross-party consensus on softening UK drugs legislation, unchanged for 43 years
    The camera is turned on tabloid editors in Richard Peppiatt's 'One Rogue Reporter'

    Gotcha! The camera is turned on tabloid editors

    Hugh Grant says Richard Peppiatt's 'One Rogue Reporter' documentary will highlight issues raised by Leveson
    Fall of the Berlin Wall: It was thanks to Mikhail Gorbachev that this symbol of division fell

    Fall of the Berlin Wall

    It was thanks to Gorbachev that this symbol of division fell
    Halloween 2014: What makes Ouija boards, demon dolls, and evil clowns so frightening?

    What makes ouija boards and demon dolls scary?

    Ouija boards, demon dolls, evil children and clowns are all classic tropes of horror, and this year’s Halloween releases feature them all. What makes them so frightening, decade after decade?
    A safari in modern Britain: Rose Rouse reveals how her four-year tour of Harlesden taught her as much about the UK as it did about NW10

    Rose Rouse's safari in modern Britain

    Rouse decided to walk and talk with as many different people as possible in her neighbourhood of Harlesden and her experiences have been published in a new book
    Welcome to my world of no smell and odd tastes: How a bike accident left one woman living with unwanted food mash-ups

    'My world of no smell and odd tastes'

    A head injury from a bicycle accident had the surprising effect of robbing Nell Frizzell of two of her senses

    Matt Parker is proud of his square roots

    The "stand-up mathematician" is using comedy nights to preach maths to big audiences
    Paul Scholes column: Beating Manchester City is vital part of life at Manchester United. This is first major test for Luke Shaw, Angel Di Maria and Radamel Falcao – it’s not a game to lose

    Paul Scholes column

    Beating City is vital part of life at United. This is first major test for Shaw, Di Maria and Falcao – it’s not a game to lose
    Frank Warren: Call me an old git, but I just can't see that there's a place for women’s boxing

    Frank Warren column

    Call me an old git, but I just can't see that there's a place for women’s boxing
    Adrian Heath interview: Former Everton striker prepares his Orlando City side for the MLS - and having Kaka in the dressing room

    Adrian Heath's American dream...

    Former Everton striker prepares his Orlando City side for the MLS - and having Kaka in the dressing room
    Simon Hart: Manchester City will rise again but they need to change their attitude

    Manchester City will rise again but they need to change their attitude

    Manuel Pellegrini’s side are too good to fail and derby allows them to start again, says Simon Hart
    Isis in Syria: A general reveals the lack of communication with the US - and his country's awkward relationship with their allies-by-default

    A Syrian general speaks

    A senior officer of Bashar al-Assad’s regime talks to Robert Fisk about his army’s brutal struggle with Isis, in a dirty war whose challenges include widespread atrocities
    ‘A bit of a shock...’ Cambridge economist with Glasgow roots becomes Zambia’s acting President

    ‘A bit of a shock...’ Economist with Glasgow roots becomes Zambia’s acting President

    Guy Scott's predecessor, Michael Sata, died in a London hospital this week after a lengthy illness
    Fall of the Berlin Wall: History catches up with Erich Honecker - the East German leader who praised the Iron Curtain and claimed it prevented a Third World War

    Fall of the Berlin Wall

    History catches up with Erich Honecker - the East German leader who praised the Iron Curtain and claimed it prevented a Third World War
    How to turn your mobile phone into easy money

    Turn your mobile phone into easy money

    There are 90 million unused mobiles in the UK, which would be worth £7bn if we cashed them in, says David Crookes