Conditional Corner: A Tourette testimony, part 1

Conditional Corner is a series that runs Fridays on TSParentsOnline. All stories, including this one by “Garry”, were originally published at Conditional Publications.

My earliest memory of being told that famous quote (the one known worldwide to all young ticcers as they grow and their Tourette 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.

Read the rest of Garry’s story next week on Conditional Corner!



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