Debbie Frick, the author of Conversations About Autism, showed up out of the blue. Over the past week, she and twenty-three other people began following my blog. My friend Robyn Coupe wrote a guest post, and legions of her followers clicked into my blog to see what she had to say about Tourette Syndrome. After reading about my call for guest posts, Debbie submitted one of her own.
Debbie’s post is academic (and why not? She’s an educator) but at the end of her piece she asks a couple of nonacademic questions: “Why should someone have to work so hard to hide that part of who they are? What are the consequences to self-esteem, friendships, or jobs if they don’t?” I’m a member of a Tourette Syndrome group on Facebook. Of the people who regularly post and reply, about sixty percent are parents of children with Tourette, the rest are adult’s with Tourette. The answer to Debbie’s question is a recurring theme in this group.
Yesterday, I read a post by a guy who had just gotten off of a flight. The dog in the seat immediately behind him was yapping up a storm. This triggered the guy’s tics, and he started barking along with the dog. Guess who the airline told to put a muzzle on it.
As Debbie’s post suggests, sometime we can suppress these tics (for a while), and sometimes we can’t. I had a rough morning today. I was terribly dehydrated from yesterday’s long-run. I was headachy and sore; everything felt off—I even had to take my hearing aids out because they annoyed me so much. One of the outcomes of my running hangover was heightened tics. All morning long I repeatedly made a purring/grunting noise in the back of my throat.
The woman in the next office—separated by a thin wooden door—can hear everything I say or do. I have no doubt she hears the grunting as well. Thankfully she didn’t bring it up with me—today or any other day—because it would be mortifying, and there’s nothing I can do to stop it anyway.
The title of the class included the word psychopathology. I really don’t like that word. It feels, somehow, insulting. But I’m not a psychiatrist, what do I know?
It was a graduate class I took after I had already completed my Master’s Degree. Post Master’s I could choose whatever classes I wanted to take. This class covered just about everything from alcoholism to autism, from learning disabilities to Tourette Syndrome.
The class was composed mostly of people working on psych or social work degrees and a few people, like myself, who were in the teaching profession. Students ranged from young kids fresh out of undergrad to me, an experienced teacher just on the south side of sixty.
We had two textbooks. The shorter book was just over 800 pages. The other heavy (literally) volume was the DSM weighing in at over 900 pages. This is the diagnostic reference used by the medical profession to diagnosis “mental disorders.”
The class was intense but fascinating. We learned a lot in the sixteen weeks we were together about the struggles that many people encounter in their lives and the medications they may take to control their symptoms.
Many weeks into the class we started learning about tic disorders and my previous notion that Tourette Syndrome is usually defined by the use of expletives was finally dispelled for good. Only about ten percent of individuals with the syndrome use curse words. I wondered how I, as an educator, had not known that the percentage was this low.
There had been at least one child in our school that had Tourette. He had been in the room next to mine in one of those schools without doors or walls where I spent twenty years of my life. I heard various noises that sounded like seal barks coming from the neighboring room but never any curse words. I think I felt that this child was the exception because he didn’t cuss.
During our class discussion about tic disorders, a young woman in the class said that she had Tourette Syndrome. Many of the other students, I’m sure, were as surprised as I was, since we had never heard any unexpected or unusual vocalizations from the woman. She openly shared her experiences with us.
I wonder now if she was on medication but I don’t recall if she said anything about that. I do remember her telling us about her constant struggle to keep her tics under control in public. I was amazed that she could do that.
She said that if she focused, she was sometimes able to control her tics for the two hours she was in class. What a battle that must have been for her!
Then she said something like, “But you should see me when I get in the car. It all comes out!”
Her openness certainly caused me and probably the others in the class to look at Tourette Syndrome differently.
Why should someone have to work so hard to hide that part of who they are? What are the consequences to self-esteem, friendships, or jobs if they don’t? I don’t know the answer to that.
Just another reminder that we don’t know the battles that those around us face.
4 thoughts on “The battles of those around us – a guest post”
I bet if we added together all the people with invisible physical disabilities like my Fibromyalgia, people with mental illness and people with neurological differences like Tourette’s or Autism, that together we would outnumber the “normal” people.
Alas, the normal people still rule (or that’s how it feels when I’m ticcing away). And obviously in the schools, there is no place for neurodiversity. I wonder when that will change… not for a long time.
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Your guest posts and personal perspectives on Tourette Syndrome are enlightening, Jeff. I think the battles, disabilities and discriminations we face (no matter what they are) are less frightening when we can give voice to them.
Thanks Mark. I agree. Learning how to *talk* about the crap that I previously just *felt* has really helped me start to address the issues instead of just living with them.