Thursday, May 09, 2013

NPR Teenage Diaries Revisited on Tourette’s

On NPR’s All Things Considered, they did a story on Josh Cutler and his experience with Tourette’s syndrome. It got me to think about, my own experience,so I wrote this letter to Josh through NPR’s comment page.

Josh Cutler,

I don’t know what you will say about having Tourette’s at 50, however I can tell you about my experience at 49.

In my generation, we weren’t all that aware of Tourette’s, I was just a troubled kid in Special Education who wasn’t supposed to go to college (but I did graduate from Central Washington University in 5 years). I wasn’t diagnosed until after I turned 40.

Now I am a computer programmer. I’ve worked for many small companies and one really large one. I think I do solitary work because I don’t trust my behavior. I admire you for having the guts to teach; I’m sad that it didn’t go well. I wish the world would be more supportive of people like us. I relate to children, I’m scared of adult’s reaction to me.

I totally relate with your jujitsu class; over the last few years I’ve been taking this Improv class over and over again; I believe that keeps me sane. I walk over a mile to work everyday day. The motion of the scene work and walking all over town helps me keep my ticks in check. I think the Improv has been good to me because it allows me to play with behavior and just be childlike among other grown-ups.

Most of my ticks are in my face shoulder, leg neck and elsewhere in my body. At times the energy behind the twitch can become overwhelming; sometimes I will shake all over for an hour at night. I’ve twitched to the point of pain. I don’t cuss, I have trouble saying the F-word in the locker room where I’m supposed to have a foul mouth. I do have a problem with “angry” outbursts.

I too had my bad Tourette’s event with long term consequences. My incident happened at Microsoft in 2000. I had been “normal” for over a year and then I burst. So, based in a moderate episode I am banned from ever working there again, and as far as I can tell, it is still in force. [NOTE: it isn't still in force, see my next post]

The curse of Tourette’s is that it leads to bazaar behavior. When I’ve behaved badly it is scary because it is different, not because it is necessarily dangerous.

Thank you, Josh, for sharing your life with us. It means a lot to me. You’ve given me the opportunity to put things into words.

Best of luck

Jack Stephens


I think there is a point where it is good to put it out there.

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