Step, step, step, torque. I twist my torso, a jerking motion, hoping for a violent stretch. Looking for a pop. A release, like a knuckle crack, like that crunching sound Eli makes with his neck when he drops his head to the side. I torque the bottom of my ribs on the left, not quite my side, not quite my back. A popular place for a tattoo these days. I’m barely off my driveway, walking to work. This is where the school kids gather for the bus. They won’t show up for twenty more minutes. I’m thankful for the solitude, the privacy, as if the middle of the street is private. Step, step, torque.
Houses line the street. Split levels and ranches. Older houses, my age anyway, from the sixties. Most underwent renovations at some point. Do breakfast nooks hide behind these windows? I feel their eyes on me. Retirees, they monitor the street. They look for patterns. They look for anything unusual. Step, step, step, torque. I haven’t done it right yet. I haven’t felt that pop. I never feel that pop. Who’s watching me? What do they think? Step, step, torque.
It started in middle school. I did it when I thought I was alone. Late for class one day, an empty hallway, I slammed my locker, torque, torque. An older boy stood up the hall. I didn’t see him until too late. He mimicked my motion. He torqued. He said “God, you’re so gay.” In 1973 that’s how you insulted people. That’s what you called anyone different. My face heated, my vision tunneled. As he passed, he torqued again.
Decades later, Mike Wall, my coworker, approached from the end of the hall. I torqued. He torqued back. “Hey Mike, uncool. We don’t do that anymore. We don’t make fun of other’s idiosyncrasies.” He gave a good-natured laugh. He didn’t apologize.
A half a block into my commute, my need to torque fades. I crush my eyes together, an extended blink, as hard as I can. I open my eyes. My blurred vision slowly returns to focus. I crush my eyes again.
~
At a conference table in Baltimore, the three of us present our case to a potential client. Partners, that’s the name of our company. Morgan and I are partners. Ryan is an employee. The three of us share one side of the table. Six people, the leadership team from Lutheran World Relief sit on the other. They’re here to evaluate our services. They will hire us if we sell it well. I crush my eyes together. I strain them up and to the right, showing only the whites of my eyes. I crush them shut again. And again. I open them wide and roll my eyeballs around the sockets. I jag them left then right then right again.
This hasn’t happened before. Not like this. I can’t stop, twenty minutes, thirty. I sit straight, chin high, defiant. Confident on the outside, curled fetal in my mind. My brain fills with embarrassment. There’s no room for anything else. I can’t formulate my thoughts. I’m conscious of the time remaining, the points that still need to be made.
Morgan and Ryan can’t see my eyes. Oblivious, but they read the restlessness in the room. I’m sure they wonder why I’m not adding anything useful to the presentation. I haven’t said a word. This realization heightens my anxiety, and my eyes spasm worse than before. The LWR employees do their best to ignore me. They look everywhere but at my eyes. I understand their politeness, but I want them to confront me. I want them to say “Why the fuck are you doing that? What’s your problem?”
~
Once again, I’ve stumbled on a WordPress blogpost using Tourette Syndrome as a punchline. This time it was a comic strip. It wasn’t necessarily mean spirited, but it furthers the notion that Tourette Syndrome is funny, something to joke about.
Of course, I commented. I even got a reply:
Later (OK, immediately) I began to second guess my response. I start and end the comment with snark. Often, it’s satisfying to do that, but is it ever helpful? Maybe I could have said it without the sarcasm:
“People with Tourette Syndrome make unwanted and uncontrollable movements and sounds. Many are unemployed, underemployed or friendless as a result. Please don’t make a joke out of it.”
In this case, ArKay didn’t lash out, which is what usually happens when I blast someone with a snarky comment. He seemed to accept my argument. But he didn’t delete the comic. Maybe he’ll drop Tourette from his humor repertoire in the future, but not this time. He already put in the work.
I’m sick of this exchange. It happens two or three times a year if I also include discussions about OCD—a common co-occurring malady with Tourette. For some reason, these two disorders, my disorders make people laugh. I can’t think of any other medical condition that people feel comfortable joking about. Reread that part about me tanking our corporate job interview. Nothing funny about that.
Tourette Syndrome awareness month is approaching (May 15 – June 15). Last year, I pulled out the stops locally. I lit the façade of our library teal for the month, and I included a Tourette fact sheet in the library’s weekly newsletter and at the circulation desks. This year, I’d like to go bigger. I’d like to go global. Please consider sharing this post on social media. I’d like to hit one hundred shares by June 15.
Thank you – Jeff
The Other Stuff 
My son has autism. He has PANDAS. A neurological condition. He has OCD anxiety . He has these hand jerks so similar to tourette. His sensory processing makes his daily life a struggle. There is nothing to be made fun of. He struggles with all and tries to do things a neuro typical person does and expects him to do. I salute all who work to overcome their issues.
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It’s a pretty unfair part of nature that these comorbid conditions all spring up in one person. Any one is disruptive (or worse) and then you add in two or three more. I’ve made the decision not to get evaluated for ASD because I think I’ve already developed coping methods for ‘the way I am’ and I can’t see how one more potential diagnosis is going to help anything. Your son is a warrior. More power to both of you.
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Yes at 25 we also could add more conditions but there is nothing we can do with those labels. As you said we just have to learn coping mechanisms.
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There is nothing funny about Tourette’s at all. I have OCD and worst of all for me is anxiety it is pure pain. If in the middle of a tic run which for me are very painful, trying to repress is 100 times worse. I somehow persevered. Went to therapy to confront thee comorbids it has helped me greatly, and after 35 years of searching for meds I found two that work for me. But not easy.. I have basically done everything a normal person does, married, child college, job. But with difficulty. I have a belief in JESUS that will never die. Like I would have without him.
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Like you Steve, I live a pretty normal looking life. Job, family hobbies. It all looks as expected until you go looking for my friends. My friendships evaporated when I got diagnosed (this was about the same time I quit drinking). One or both of those is the cause, but the real problem is my discomfort socializing sober and ticcing. Something I work on every day.
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Shares on facebook.
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Shared. Awareness is important. Thanks Jeff.
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Thanks Kate. It means a lot to me.
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I can see that Jeff and you’ve had a long time to live with it and put up with it. I think of a little kid, a teenager – it’s a terrible thing when you can’t be in control of your reactions at times.
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Lots of bullying. My more egregious childhood tics were reserved for home. I was very lucky that way. BTW, we had no idea what was ‘wrong’ with me. Tourette Syndrome was far from a normal household term at that point.
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It would have been I credibly difficult Jeff.
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I should be clear, I’ve been bullied very little throughout my life due to TS. I was bullied a good bit as a teenager because I was obnoxious and really little.
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Thanks, man.
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This was so insightful.
Thank you for sharing.
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Thank you Granny
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I didn’t know you suffered so, Jeff. My heart goes out to you and I’m so glad you stuck up for yourself – and for everyone with tourettes – in your comment. I’m equally glad the person didn’t lash out at you but accepted your well-written comment. Were you able to leave the meeting in peace? Did ‘the partners’ get the deal? Did you manage to “tourque” yourself to where you felt satisfied? I’m thinking of you and sending you love xx
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HaHa. No. Partners didn’t get that job. It seemed like a ‘lock’ going into the presentation, so I only blame myself. One thing I can say for Tourette, several high profile people are coming out with their condition, and I think that really helps. Even though I’m not interested in Billie Eilish’s music, I have a ton of respect for the way she’s helped normalize TS.
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I applaud you for speaking up and continuing to educate all of us about the plight of those who live with Tourette Syndrome. We live in a country where too many devolve into making fun of differences and characterizing empathy as a human weakness. Be well, my friend.
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I just shared this with my Facebook friends, Jeff.
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Thank you Mark. I really appreciate that.
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When I get an uninterrupted minute to figure out how to reblog this, I will. I don’t have many folks, but they’re good ones.
Even with all the autism awareness, people still don’t get it. I still get asked what Ben’s “superpower” is🤦🏼♀️
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I know how to reblog something on a windows PC. I looked on my phone and I have no idea what to do. I think many people never really encounter autism in their daily life and they still think of the rain man. Robyn once told me a story about a doctor who was asking about Declan’s superpowers. Sigh. There are a lot of ignorant people out there.
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Good for you, Jeff, for speaking up and raising awareness of Tourette Syndrome. It must be a real struggle to come to terms with at times. I think it’s important to share with people how life can be with this condition, as I think it’s more common now than it was, although perhaps that’s not right; it just seems that way because it wasn’t talked about in previous years.
It must have been really tough as a child to have these tics and mannerisms without knowing what was wrong. It’s awful, too, that you were bullied because of it. Kids can be cruel, but then, so can adults. I remember when people referred to ‘gay’ as an insult. The other [unconnected] word used to insult people with any disability was that awful term ‘spastic.’ Thank goodness that’s not used regularly anymore.
I’d not heard of the word ‘torque’ before and had to, in my ignorance, look it up in the online dictionary. Well, at least I’ve learned something new today. How long is it till your eye operation now? It must be coming up soon.
I don’t use FB anymore, but I have shared your post on my Twitter feed, although I don’t use Twitter much anymore, either. You never know; someone might read your post and better understand Tourette because of your writing and honesty. I wish you well, Jeff.
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I wasn’t too much bullied because of TS. I was bullied a bit in general, I was a tiny teenager. My most prevalent tic, a high pitched shriek I only did at home. I honestly don’t recall ever having a conversation with my parents about any tics or my OCD bedtime routine. They probably thought it was just something I’d outgrow. And I did for a while. This stuff all came back after my brain injury.
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Loved your post. I had a tic disorder as a young girl. They began when I was 5 ish, and I was eventually able to stop by around age 10. At least thats how I remember it. I became adept at hiding them or disguising them as I was always told off for pulling silly faces. I also had some vocal and belly tics. Having researched later in life, I understood that I had and still do have I guess, a mild form of Tourettes. I have always carried the extras, such as OCD, anger issues, night terrors, difficulties with mathematics, poor balance..I believe this neurological anomaly must be a spectrum disorder..I am humbly grateful for mine being at the softer end. I have managed to become much more calm and focused through Yoga and mindfulness. Tourette’s is the one condition that people will joke about, and if I ever feel the need to mention it, which is not often, the response is often, yeah and me, as if everyone has it at one time or another. I appreciate your honest writing. Wishing you the very best with everything. One thing I do know is that what we are imagining others are thinking is nowhere near the truth. I wish you luck with lessening your anxiety by holding on the notion that you have achieved so much despite the odds, and anyone who hasn’t walked in your shoes has no right to judge. Stay strong. All the best
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I’m sorry. I somehow missed this thoughtful and awesome comment at the time. For me, deep breath exercise (running and biking) has been my calming agent. Recently, I’ve added a yoga class per week, although right now that probably adds more anxiety than calm–I’m still figuring it all out. Like you, I probably have a spectrum disorder for all of my ‘issues’ to fall under, although my tourette medication seems to help almost all of it. Belatedly, thank you for stopping by.
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