Bruce sent me a text the other day: Hey Jeff, the movie “I Soar” is opening at a local Baltimore theater This is the life story of Tourette syndrome campaigner John Davidson. G and I are going to see it this weekend. Maybe it’s ringing in your neck of the woods.
Bruce is one of my oldest friends. We met forty-six years ago the day we moved into the dorms for our freshman year of college. For some reason I went to his room and introduced myself. Maybe he was playing one of my favorite songs. Maybe he had a wall poster that resonated with me. Maybe I had an unusual burst of confidence. Although a smart, strategic move, he came to college with a huge bag of weed. Oh right, plus he’s been a great friend my entire adult life. I find it difficult. I just went through a ten-year isolation period where I burned most of my friendships, but Bruce is still with me. He once said, “Don’t worry Jeff, you’re stuck with me for life.” So far, this is true.
Maybe you’ve heard of John Davidson and i swear Both were in the news recently a few months ago. In case you missed it, Davidson was invited to the BAFTA Awards (basically the British Oscars). i swearwhich has received nominations for various awards. Davidson, who has Tourette syndrome and specifically coprolalia, the uncontrolled pronunciation of words and phrases that are culturally taboo, shouted the N-word while two black performers were presenting an award. The BBC did the show two hours late. According to the report, they heavily edited the show, removing several other obstacles, but chose to keep the shouted profanity on air.
As you can imagine, there was an epidemic. I woke up the next morning to Facebook statements from the Tourette Association of America and Tourette’s Action (the UK version of TAA). Both organizations acknowledged the hurt black people must have felt when they heard the word screamed in the middle of the presentation. And they double down on the fact that Davidson has no control over his coprolalia. Using a racial slur is not indicative of his opinion.
Like most people with Tourette syndrome, mine comes with comorbid (cooccurring) conditions. The most disruptive of these is obsessive compulsive disorder. At this point in my life, my OCD is a mild case, but I’m still metaphorically bound to pick at scabs. And pick I did. After reading every news article I can find controversial, I read the comment sections to see how people feel. The hate was palpable. “Davidson shouldn’t be out in public.” “He needs to learn to control himself.” “If he wasn’t racist, the n-word wouldn’t be signaled and ready to pop out.”
When Tourette’s is portrayed in the popular media, coprolalia is almost always the disorder depicted, although only about ten percent of people with Tourette syndrome have coprolalia. People find it deadly and therefore funny. Non sequitur kissing is an easy way to get a laugh. I don’t swear. I scold. I make faces. I blew out my breath and covered my wide-open eyeballs. I lick my lips. I scratch my skin raw. These vocalizations and movements are called tics, and they change constantly. They come and go with no obvious trigger. Many persist for years and others pop up for a few weeks and then disappear. My biggest fear is that one day I will develop coprolalia.
At the end of BAFTA week, someone asked me about Davidson’s use of the N-word. Maybe, he said, Davidson can’t control his Tourette’s, but because he said that word, he’s obviously racist. I tried to explain that due to coprolalia, his brain was holding the most offensive word for the situation. My friend seemed to consider it, and then, when she didn’t say it out loud, she dismissed my explanation as incorrect.
A few days ago, while talking to my friend Karen, she mentioned that one of the reasons she often skips our yoga class is because she worries that her glucose monitor will disturb those around her. He is a type 1 diabetic, and requires continuous monitoring of his glucose. Turning off his monitor for ninety minutes isn’t an option, and his cell phone isn’t pinging during class either. Another woman often neglected to silence her phone, infuriating the entire class with the constant interruption of incoming texts. Fortunately, I’ve only had to defecate a few times while doing yoga and I’ve managed to keep it fairly quiet. The rest of my ticks are not audible, so I let them fly if necessary. Perhaps the most obvious is a full body torque in an attempt to relax my torso muscles which aren’t actually tight. My mind just tells me to torque.
Like many with Tourette’s, I interrupt people in my orbit all the time. I attend meetings at work and rub my eyes together repeatedly. People don’t look me in the eye when talking to me. I’m sure they’re trying to save me from embarrassment, and I think they are, until I realize that people change their behavior to make me, and especially themselves, more comfortable. I also sit at my desk and rant all day. For the past several years some of my assistants have listened to music and podcasts through headphones while working at their desks. The baby boomer in me gets excited by this practice, but I recognize that they are trying to hear something other than just my roar.
Sometimes when my ticks multiply, I ask my wife, “What will people think when I shed so many ticks?” After reading John Davidson’s comments in various publications, I now know what people are thinking.
I have already decided to skip the meeting i swear. Watching and reading Tourette’s content is triggering for me. It aggravates my tics and it makes me feel bad about myself. while reading a book Motherless BrooklynI wandered around in a terrible mood for weeks then assumed everyone I knew thought I was crazy (insults repeated in the book). Foolishly, I then tried to watch the movie. I made it ten minutes before I needed to turn it off. I ticked so hard and so relentlessly, I could barely concentrate.
A few weeks after the BAFTA debacle I ran into a writer friend. He also has Tourette syndrome and has written a novel with a Tourette plot. Her book moved me too, but I went through with it because I wanted to support her as a writer. I asked him how he was doing in the weeks after the BAFTAs. He said, like me, it has given him a lot of trouble. Then he said something I hadn’t considered. He believes the BBC placed offensive comments on their broadcasts to create buzz. All press is good press, they say, and at least in between my The online feed, the press was endless.
He probably has a point. I had never heard of the BAFTA Awards before the Davidson incident. Now I know all about them. Another example of Tourette syndrome exploiting the media for attention.
Tourette Syndrome Awareness Month runs from May 15 to June 15 Please take some time this year to read about Tourette’s and imagine what your life might be like if you couldn’t control your movements and sounds.
A Tourette reading list:
https://jefftcann.com/2025/05/19/so-much-more-than-tics
https://jefftcann.com/2023/03/28/torque
https://jefftcann.com/2021/02/27/motherless-brooklyn
Image via iStock
Previously published Jeff Cahn’s blog
