MY TOURETTE’S – by Garry (aged 39)

My earliest memory of being told that famous quote (the one known worldwide to all young ticcers as they grow and their Tourette’s becomes more noticeable) – “STOP DOING THAT” – was by my Mum and my Nan in the kitchen on that lovely sunny day in the mid-1970s.

Everyone had longer hair then,  and even though I was only 5 or 6 at the time, I can still remember sitting on the counter, tilting my head back and looking toward the ceiling so the longer hair at the back would touch the back of my neck and the middle of my shoulders.  I really liked that feeling and for some reason wanted to do it again and again and again.  It was summer and I had my shirt off and it felt lovely on my bare back.  It seemed a really big deal to my Mum and my Nan, though, and they were discussing whether I needed a haircut – as if it would stop this new bad habit!

Then over time I’d do it at the family dinner table and got slapped on the wrist for doing it so much.  Then I did it at school and forever after, as well as other things such as constantly blinking and sniffing.  And yes, forever after I also got shouted at to “STOP DOING THAT”, especially when in the company of my parents’ friends or other family members.

In school, I never took part in things with the other kids and used to stand on my own in the playground at dinnertime in my own little fantasy world, staring at the clouds, trying to make friendly shapes out of them and wishing for home time to hurry up.

Then came the various noises – not words, but grunts and throaty stuff, and even louder and longer constant sniffing.  My most painful and prominent tic was rolling my eyes so much that they strained, and shrugging my shoulders uncontrollably.  I can remember being in the bathroom and being frozen solid, trying to make a certain sound with my throat by breathing in air (as if taking my last breath).  I couldn’t move until I’d done it.

I was pretty poorly as a child and my bronchitis, which I had suffered with for a long time, had also become bad.   I was spending more and more time away from school because I was quite ill.  The simplest common cold or virus went straight to my chest and I’d end up wheezing and spluttering for weeks at a time.  Maybe people thought the other noises were associated as well and blamed it all on the bronchitis?  I was on all sorts of medicine and had to use a couple different inhalers, but I can always remember there being more and more tablets that, for some reason, I only took at home.

I went through the next few years coming home and just wanting to sleep.  As soon as I got through the door, when I was about 12 or 13, my mum shouted at me to stop sniffing.  “Don’t your teachers say anything about that?”

Other things started to happen to me.  I used to pick up my dinner plate  from the kitchen, but couldn’t walk through the door until the two imaginary firework circles inside my head were going in the same direction.  You know how when you have ‘sparklers’ you hold them in the dark, move them around in circles, and on some cameras it comes out as a funny orange circle?   Well, that was now in my head and stopping me from doing things unless they were both going in the same direction, and sometimes it would be hard to make them do that.  It was actually such a strong impulse that I thought this part of me was normal, and didn’t everyone have to make the circles move at times?  It wasn’t until my final diagnosis that I discovered they didn’t.

I felt so ashamed about my twitching – so utterly, utterly ashamed.  I’d always shy away if it was mentioned or ignore the issue, or just run.  I could never talk to my friends about it and certainly never spoke to girls – at all!  Adolescence was the worst time.  The name-calling started and I found myself making up stupid excuses to explain why I twitched.  I’d say I was in a car crash and had an operation and it made me like this, so it wasn’t my fault, or other such stupid stuff.  I’d forget about the noises, or if I caught someone looking at me, I’d reverse them into a type of cough, which, due to the bronchitis, I seemed to get away with.  I became used to camouflaging my tics, and still do it to this day.

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In 1989, when I was 18, Johnny Davidson from Scotland became the first person with Tourette’s ever to be featured on British TV, in a prime time documentary.  Coincidentally, it was on at a time when a lot of my friends were at my house for the evening.  I’d never heard of this Tourette’s word before, and probably couldn’t even pronounce it properly.  My friends were all laughing and hooting at the things he was doing and the noises he was making, and the swear words.  I remember one of my friends saying to me, “Hey Gal, that’s what you do,” and a few of them laughing at me.  Then my Mum came into the room when Johnny was eating with his family and had a spitting tic.  My Mum said, “That’s nothing, Garry was worse than that when he was a kid.”  Funnily enough, it still was never mentioned to me by anyone – not my family, not my friends, nobody – and was left like that for years.  And I still have not mentioned it to them now.

Years later, I looked at a few websites and started reading up on Tourette’s, so much that I once again began to obsess about it and couldn’t get it out of my mind.  I kept it like it was my dirty little secret.  Then I finally went to my doctor to see what I needed to do and where to go.  I’d read all I could about a TS diagnosis and was sure I had it, but was worried that they would say no, it was something else.

My doctor seemed completely fine about it and said he had a friend who was a neurologist and dealt with Tourette’s Syndrome on a daily basis.  Things then became confusing for me.  I had what I had suspected for a long time, but should I generally tell people or not?  The tics had actually faded with age, and everyone knew me as who I was, so why should I tell them something now that may upset them, or start the ridiculing again?  And I worried that with meeting new people, there is such a huge stigma attached to Tourette’s, they would just assume the worse about me.

I discovered social networking and started to use Facebook a lot.  I even found there were groups of people with TS openly talking about the subject on there, so one night I joined an American-based TS group and started to open up for the first time in my life.  It was nice, as I didn’t know any of these people or have to talk to them face-to-face, and I soon felt relaxed, as their stories and problems either outshone mine or were the same.  Very slowly, I also started to tell my closest friends at work, those whom I could trust, to gauge the reaction I would get.   Some said they’d always known I had a twitch but that was just me, and no I was wrong, I didn’t have TS, it must be a mistake.  Others I could never tell, as the subject would be just too outrageous in the testosterone-fuelled and piss-taking environment the stresses of my job create.  So for me, I have always been happy not to tell unless asked, and then scrutinize and check, then check again who I was going to ‘come out’ to.

More recently, and after talking to many people online with TS, I began to get invitations to meet up with other ticcers, but I always put it off.  I just couldn’t do it.  I was fine to talk about this openly in written form, but to someone else face to face!  What if someone at work found out, or a member of my family?  Part of me still had this underground ashamedness of it all that I felt as a child.

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Now this will sound a bit crazy but a few people that I was talking to online back then almost became like celebrities to me every night.  Wow, they were real life ticcers, just like Pete Bennett, not an e-mailed conversation from halfway around the world or a newbie like me.  They were in my own city and living with it and telling me I could also, and to get myself out and meet with people.  But I didn’t.  I still put it off and off and off again, until November 2009 when I jumped on the train and went to Victoria Station in London to meet my online TS mentor and very first other person I’d ever meet with Tourette’s Syndrome.

We met in a pub and then went across the street to meet up with several other people and to spend the afternoon and evening all together.  It was crazy, I just wanted to take notes and ask a hundred questions.  These guys had all known each other from before, some for years even.  My initial reaction was that I felt like a fraud; it was obvious that TS affected people in many different ways as far as tics were displayed and some were much more advanced than me in this field.  I was suppressing my tics still for some reason, probably as they were still strangers to me really and new people.  I was scared and felt like I wasn’t part of this group really as my tics were not as bad as some and, like most of the medical information I had read stated, TS can ease over time and obviously had for me.  I felt really guilty because of that.

After sitting and talking to people I realised that I was the same, I was very much part of this thing and began to really enjoy myself.  What was the worry, why had I been so scared to talk about Tourette’s in the first place, then scared to meet up with people who were basically more of an expert about it than any Doctor, or book I had read?  These were real life people now sitting and having a beer with me, who had experienced exactly the same as me throughout their lives.  The connection was unbelievable and also very emotional for me, so much that after a few hours I made my excuses and left.

I cried on the way home, like men do in Hollywood films, just wet eyes and a solitary tear on one cheek.

I had been accepted and I was now out of the TS closet.  Over the next week I told several people that I had Tourette’s.  I even found myself bragging about it in some circles.

Since then, I have told more and more people and met up with my friends even more, some individually and some as a group.  To me they are not just friends, though; they are family I never knew I had.  Just like if I was adopted as a child and then met up with my real family years and years later  – “This is your sister, this is your uncle, this is your older brother.”  We have so much of the obvious in common, it’s remarkable.  So thank you, ladies and gents, for kicking me up the backside and dragging me out of my shell.

Today, I am the guy who is still apprehensive about telling people I have TS straight away, but I like to tease them.  I wear a Tourette’s badge on my tie at work that is large enough for people to need to ask what the hell it is, and even when in conversation and I suddenly interrupt someone I will apologise and blame it on my ADHD, or if I am being told a story like I was today and got bored after ten seconds, I will tell them to hurry up as I’ll be walking away in two seconds.  Then they come back and ask what I meant and I tell them the whole story, and of course they say, “But you don’t swear and shout….”

So this is my story and this is me now today.  A tall good-looking guy who likes a drink and a wink, with a major neurological comorbid disorder called Tourette’s Syndrome.

I finally made friends with it : )

  1. April says:

    Just want to say that it was great to hear your story and for reasons such as those in your story is precisely why I have already begun teaching my son to embrace his TS and not be afraid to talk or tell about it. He (and his twin brother) are eleven now and up until last year he didn’t know what he had or why he does what he does. I’ve seen a great change in his happiness and confidence since he began learning about other children and people like him. He even started a tiny blog. If you care to he would be thrilled to get any comment or messege on his weblog http://tourettesandme.wordpress.com

  2. brian says:

    A very well written story Gary…You’ve been able to remove your mask and reveal yourself to the world as a person with tourette’s. I’m glad this makes you feel more confident and comfortable with yourself. I actually didn’t know I had tourette’s until I self-diagnosed myself later in life. My tic’s weren’t all that bad or noticable until recently, so it wasn’t a major issue with me or my family. Although I was struggling inside, I was able to conceal it or cover it up most of the time. These days I have a much harder time dealing with it, and believe stress in my life had made it worse.

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