My Journey with Tourette’s Syndrome
I was diagnosed with Tourette’s Syndrome when I was an 11 year old boy. For the two-or-so years prior to that I had been doing some unusual things: making odd noises and exhibiting strange facial expressions. “Nervous twitches” was what we called them, back in the day. I have a few clear memories of that era in my mind; my Year 4 teacher (a lovely bloke) getting irritated at my repetitive sniffing; a conversation with a school friend about why I always squeaked as we walked along the pool deck at Beatty Park during swimming lessons; the peppermint tress and 80s decor at the office of the GP who referred me to a Neurologist. And I remember seeing that Neurologist, replete with tendon hammers etc, and receiving the diagnosis. Naturally, being 11-or-so and it being the late 80s or very early 90s, I had never heard these words: “Tourette’s Syndrome”.
So, what’s it actually like? What do I feel?
I feel a compulsion to do things with my body and voice that have no purpose other than to relieve a strong urge to do them. It’s not totally involuntary, but the urge is extremely strong and immensely difficult to suppress. But once I start to do a tic, there is no great relief from it, and I sometimes get ‘stuck’ in the tic, like a car spinning its wheels in beach sand.
The most troubling thing I face now is a compulsion to look at people - women and men - in a sexually inappropriate manner. The nature of the urge is to do the thing that shouldn't be done. I feel an urge to do it because it is “wrong” and should normally be inhibited. In this way it is similar to coprolalia, which is a compulsion / tic involving swearing. In Tourette’s - as I understand it - the problem is that the normal inhibitory forces are reduced. Others have the impulse to do the sorts of things I do, but the signal is unconsciously modulated by the brain. My inhibition mechanisms are sub-par, which is why the strange urges make it through to my conscious mind. When I developed some coprolalia in my early twenties, it was the catalyst for beginning to be medicated for Tourette’s. It was a strange and distressing compulsion - a “don’t think of pink elephants” force pressing in on me quite often. The strange thing with all of this is that people who know me know that I am not a leery or sweary person. Far from it. Maybe that’s why I feel these particular urges? Because it is so out of character?
Here are some of the other noises and movements I feel compelled to make or do:
Beat box noise
Snort
Squeak
Stroking my beard
Rubbing my fingers together
I have had many other compulsions in the course of my life, and things generally wax and wane over months and years.
A lot of water has flowed under the proverbial bridge since I was given the diagnosis. Living with Tourette’s has been everything between mildly irritating (for me and others) to deeply demoralising. Most days I just get on with things but there have been many dark and despairing times.
The funny thing is that I wouldn’t necessarily wish away this burden, because I can’t imagine who I would be without it. Living with Tourette’s - in no small measure - has made me who I am. Which is not to say I think I’m anything special, it’s just that I don’t know Tourette’s-free Tim. Maybe I wouldn’t like him? One thing is for sure - I am glad that I had to go through a kind of death when I was young. I had to “die” to the hope that Tourette’s was going away for me. I had to accept that Tourette’s (plus the anxiety that came with it) was putting a handbrake on my career achievements. When I was 17, I felt like the world was at my feet. When I was 23, I was content to find some way of living that was merely sustainable - “I’ll settle for a life where I can put one foot in front of the other”. But I suspect that what I had to go through is true of most people. We are all constrained in some way. We all have to come to terms with the fact that we don’t get the life we could have, hypothetically. We all come down to earth. I guess it was just pretty vivid for me.
My Christian faith has been the lens through which I have tried to make sense of having Tourette's. It has been the engine room powering my (mostly) constructive response to receiving this fate. That process - of framing the problem, coming to terms with it and overcoming it in some measure - has been profoundly and positively influenced by my relationship with God though Jesus Christ. I don’t know where I would be without this faith.
From within the Christian worldview, we understand God to have placed us in bodies. We are creatures with creaturely needs and limitations. But God’s plan has always been for us to be en-fleshed, encased in bodies. Next to my faith, and beside my family, the best thing I have had to help me keep going has been exercise and sport.
For me, exercise/training/competition has been;
A way to reset my brain and breathing
A way to connect with the environment
A way to connect with my deeper thoughts and feelings in solitude
A way to calm down my body and mind
A way to train myself to cope under stress
Moving my body and being fully immersed into an all-consuming physical experience (e.g. running a race or riding a wave) has been a transformative habit. Maybe that’s why life has pulled me back into the direction where I’m making it my job to help others connect with movement for the sake of their mind?