Getting Personal: I’ve Come a Long Way

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I turn 44 in August and in the last few weeks, I’ve thought about what how far I’ve come since I was first diagnosed with Tourette Syndrome. It’s been a long road. I, sometimes, forget about the changes to my life because of having it. I have to be careful not to be too stressed, too uncomfortable, too this or too that. But like I said, it’s been a long road.

 

When I had my first episode in study hall, I was scared but I was mentally recording the reactions of everyone around me. My teachers were so calm and caring despite never having seen something like that before. When my mom came, she was in concerned mom mode and wasn’t sure what was going on. But you could tell she had the situation in hand. Later, despite the ill-preparedness of the nurses at the clinic to handle my almost 90 minutes of ticcing, I was finally done ticcing. The episode was over.

 

Or so I thought. I would have episodes somewhat frequently the rest of the school year. I started to learn that my emotional state had a lot to do with my episodes… But so did the fact I would suppress individual tics. Eventually they’d explode, like a soda or champagne bottle that’s been shaken up violently and just waiting for the top to come off.

 

In college, it was the same. More episodes. I had grown weary of living like that. Granted, it wasn’t every day or every week, but at least once a month I would have had an episode or two. I never went back after that first year. Something I came to regret. It was fear. Fear of people seeing me differently because I am different. I didn’t see myself as normal or someone who was worthy of being in higher education. I was just a distraction.

 

As years went by, I learned to control my ability to remain calm, thus preventing episodes from occurring. I came to understand that I didn’t need to react to everything and that not everyone looked at me as damaged. If they did, they obviously didn’t know me. Strangely, it was my hearing loss that gave me that insight. Though it was a somewhat slow process, I became stronger and didn’t care if some stranger saw or heard a random tic of mine.

 

It got to the point where I had, maybe, one episode per year. Sometimes it would be 2 per year. But that’s far less than what I went through as a teen and young adult. From a supremely self-conscious teen to an adult in his 30s who ticced publicly like “What?”

 

It’s been almost 30 years since my diagnosis and living with TS. It’s been a wild, uncomfortable, sad and strengthening ride. I still have my moments of self-consciousness about ticcing and suppressing my tics, but then I remember how far I’ve come.

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