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T(r)IC(k)S #6

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Life's A Twitch! Celebrating 15 years.
1998 - 2018
Life's A Twitch! Celebrating 15 years.


The "Big Secret!!" Part I

For the first 18 and half years of my life I had a Big Secret. It was, I felt, a secret so terrible, so bizarre, so frightening, and so….well….BIG I tried hiding it even from myself. I did not know what would happen to me should others discover my Big Secret, but judging from the reactions I received when only the slightest hints of my Big Secret occasionally snuck out I knew it could not be good.

So I went to any lengths to conceal the truth: I said nothing when my parents interrogated me concerning "acting out" behaviour. I said nothing when, at 10, I was continually chastised for scribbling on my schoolwork and, at 16, I appeared to be peeing myself in class. I kept other children at arm's length and said nothing, positive they would never like me if they knew. I said nothing when, night after night, I endured what I fondly refer to as "scream-dreams", where everyone I knew and loved berated me, bound me into a straightjacket, and threw me into a padded room. Put into therapy at 12 because of my despondency, my therapist asked me if there was anything I wanted to tell him about. I again said nothing.

My Big Secret, of course, was that I "wanted" to do strange movements and make strange noises, although "wanted" seemed not to be the right word. Even though I "wanted" to, I didn't really WANT to. How does a child explain this?

Keeping my Big Secret was one of the most self-destructive things I have ever done. The ever-present sureness that I was a "wrong" person caused many self-fulfilling problems, and negated any positives that ever occurred (because, of course, those positives were given to me by people who did not know who I "really" was).

Back then, in the absence of much awareness of, or research in, Tourette Syndrome, my going undiagnosed may have been a good thing………had they known, all of my actions would have been interpreted within a very different context, one influenced by fear and ignorance. Decisions concerning my abilities, or assumed lack thereof, may have been made for me. So while at 26 I might have had fewer emotional scars, on the other hand I might have also been picking garbage in a park somewhere.

Today, however, with awareness, education, and supports for TS as widespread as they are, an early diagnosis can allow today's children to have their cake and eat it too - less psychological damage from going misunderstood AND the knowledge that you have many strengths and the ability to achieve your goals not just in spite of the TS but in fact because of it. I believe that "coming clean" about your TS in the classroom is one of the most risky, nerve-wracking, and courageous leaps of faith that you will ever take. I also fervently believe that it is one of the best, most rewarding things you could ever do for yourself. Here's why:

Suppression shoots you in the foot. From my own experiences, and from what I've observed in other TS'ers I've worked with, what is denied expression in tics leaks out in other ways.…..increased irritability, explosiveness, anxiety, obsessive-compulsivity.....all things that, ironically, can get you into much more trouble than the tics ever could have! In essence, you are so busy committing what meager inhibitory resources you have to hiding your tics, all reserves are depleted for inhibiting anything ELSE. You have left yourself defenseless in dealing with an unexpected frustration, focussing on a math lesson, or coping with an intrusive thought. One boy I know, after months of TS education directed at both him and his school, reached a point of acceptance where he chose to begin ticking in class. I remember the surprise in his voice when, in a subsequent meeting, he told me with pride, "I can pay ATTENTION now!"

Did I mention that suppression shoots you in the foot? One of the reasons I was so certain that people wouldn't accept my oddities is because of how "big" each reaction was. What I've learned since is that while people react "big" the first few times, unsuppressed tics send a clear nonverbal message that "I have a difference". This helps people who initially have no idea how to react to quickly adjust to the situation and develop good poker faces (many of my friends and colleagues claim they have reached a point where they literally don't notice my symptoms anymore). Back when I only ever allowed single tics to intermittently sneak out people hadn't the opportunity to become accustomed to them, to realize that there wasn't a purpose behind them, or sometimes to even realize that it was I making these noises. In a sense they hadn't the opportunity to appreciate how rude their reactions were. As far as they were concerned I wasn't "Duncan with TS", I was "Duncan who is just like us who just did something strange so it's safe to laugh".

Will conclude next time, my friends!


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Last updated on January 3, 2018

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