Our house was seventies suburban, solid hardwood floors but with drywall so thin I once punched a dent in it during an uninspired attempt to show my dad a bit of emotion. Each morning my father awoke early for work. He started every day with a shower. Everyone else had an extra hour to sleep, but that thin drywall, man, the plumbing with no soundproofing rattled the whole house. I guess what I’m trying to say is sound carried.
My parents entertained often. Usually boozy weekend bridge games while my brothers and I huddled upstairs watching my parent’s black and white TV. Barney Miller, Chico and the Man, shows like that. When primetime ended, we launched directly into Twilight Zone reruns, or better, Saturday Night Live.
One outlier occasion springs to mind: my parents had another couple over to visit one afternoon. Thinking back from my adult perspective, I assume it must have been a business-y sort of get together. Friends, but trying to achieve something specific. My brothers were out. I sat in our family room shrieking.
My father let me take the bowl of pistachio nuts the adults had worked on earlier in their meeting. “How many can I have?” Pistachio nuts were rationed in my house.
“I don’t know, maybe a thousand.” I misheard him. I later learned he said a dozen. We had a good laugh, sort of, about me finishing the bowl. I cracked a nut and popped it in my mouth.
My method of eating nuts hasn’t changed since childhood. I separate the nut into halves with my teeth. I stash one half under my upper lip, out of the way, while I work on the other half with my front teeth. My side-to-side motion reduces the nut to pulp, and then I start in on the other half. After each pistachio, I let loose my shriek—a guttural back-of-the-throat hum that traveled a couple of octaves in a continuous arc to finish off in a high-pitched squeak. Sort of like a slide whistle, but without the musicality.
I only made this sound when I was alone, but I always did it when I was alone. Knowing that my parents entertained in the next room might, I would think, cause me to keep quite—it would today—but I can’t remember that part of my life so well. What I do remember is that at some point during the afternoon, I heard my parent’s male visitor say with some annoyance, “What is that sound?”
My father responded “SHHH, mumble, mumble.” I couldn’t catch what he said. But I know I was interested in it. I had no idea why I shrieked all the time.
Given the sound characteristics of our house, I’m certain everyone in my family heard me shrieking. Once my friend Joel slept over, and we stayed up late into the night, my door closed, whispering about which girls in our class we wanted to get busy with. The next day, my mom told me the whole family heard every word we said.
When I laid in my bed or sat at my desk, shrieking, I felt like I was in a world of my own. In truth, I essentially had a piece of cardboard between my room and my brothers.
I still do this today. I don’t shriek anymore, it’s more of a grunt, or maybe a purr. Possibly the sound of an outboard motor failing to start. This evening, I sat in my family room. Susan went to our bedroom to change clothes for a fitness walk. I forgot Eli was home. I grunted absentmindedly over and over as I scrolled Facebook reels. Suddenly, I heard Eli walk into the adjoining room. I have no idea what he heard, or what he thinks when he hears it. In general, we ignore my sounds and movements. I’m self-conscious of them all the time, but there’s no point in discussing them.
I spent today interviewing candidates for the administrative assistant position at my work. This employee sits directly outside my office, about ten feet away from me. After we make a selection and they start, I’ll have the conversation. “I want you to know that I have Tourette Syndrome. You may hear me making weird sounds or see me making strange faces. Sorry to dump this on you. I think it’s easier if I just tell you about it up front.”
Tourette Syndrome Awareness Month runs from May 15 through June 15. During this time, I try to offer a sense of what it’s like to live with Tourette.
The Other Stuff 
You give me a view of Tourette Syndrome from the inside that I didn’t even think possible. Your candor makes the writing alive, vital, and important.
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Well awareness is definitely the goal of this post. It will be published on the Good Men Project website next week (lots of views there), TS is absurdly misunderstood, although some high profile celebs like Billie Eilish have talked about it quite a bit over the past couple of years. I think Gen Z and younger Millennials get it. Boomers (like me) and Gen X are still stuck on the cussing stereotype. Thanks for reading and commenting. Always appreciated.
At some point I’d love to hear from you if you think Fragments is still relevant. I’ve pretty much stopped talking about it because I’m concerned it’s pretty dated, but I’m not really basing that on anything except I haven’t picked it up in six years.
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Thank you for sharing another layer of your story, Jeff. You’re helping to raise my awareness of Tourette Syndrome and the daily challenges you face. I wish you all the best everyday!
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Thanks Mark. My story might be tapped out. Not sure what’s left to write.
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Maybe tomorrow will bring a new story to tell.
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You describe things so eloquently Jeff. Writing about something personal and important to you can come from so many different angles yet you always choose the right story to illuminate.
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Thank you Kate.
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Your comment that GenXers are stuck on the cussing stereotype rang true for me. Thank you for expanding my awareness and being vulnerable enough to share your experience. Beautiful writing, Jeff!
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Like with homophobia and various isms, attitudes may primarily change with older generations dying off and new generations being more open minded–or just kind. Thank you for your compliment.
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Finally … finally … I’ve caught up with you, although I think I might have missed a post or two along the way. Sorry I’ve been absent from your blog for a while. I’m starting on a new, much stronger painkiller tonight and am not looking forward to the fact that it might render me incapable of keeping up again. Honestly, since this tooth and its nerve got damaged so badly, I’ve got ridiculously behind with just about everyone’s work.
Thank you for sharing your honesty and vulnerability here, Jeff. I’m always interested in reading and learning more about you and how Tourette affects you. I can imagine it must have taken a fair bit of getting used to for your family and friends, but then, they love you for who you are, Tourette or not, as do all your readers. I think you were brave and sensible to share this information with your new colleague, although I imagine it must have been a tad scary when you had no idea how he would react. I’m sure he will accept you for the friendly, efficient and kind man that you are.
I know this is nothing like what you have to deal with. Still, I have this little ‘habit’ that my Nan used to pull me up on and tell me off for, and that was when I’m really absorbed in something or am, perhaps, feeling very anxious about something, I press my finger firmly into the side of my cheeks and chew the skin of my mouth and lips on the inside! Okay, I reckon that’s pretty gross, but I’ve done it since childhood. I think I’m more conscious of it now, so I can sometimes stop myself, but it’s frustrating. I must look pretty strange!
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I’m sorry you need to take drugs to get through your days. I hate narcotic pain relievers (funny coming from a guy with a history of abusing those drugs). I needed to take them for a three week period after getting hit by a car, and I swore off them for life.
I’ve got several inside the mouth tics that come and go. They can be among my most annoying. The skin inside the mouth isn;t very sensitive so it’s easy to mangle it. I often wonder if people notice my mouth tics. I think they would look pretty weird, but maybe no one pays attention to me.
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Thanks, Jeff. I hate taking these sorts of drugs, too, for pretty much the same reason as you do. I abused prescription drugs, as well as over-the-counter and illegal drugs, too, all those years ago. It’s been a decade at least since I last took anything remotely like them, and I don’t want to now. However, I just can’t cope with this level of pain, as it stops me from enjoying my life and participating in my usual activities.
I find the skin inside my mouth and lips pretty tough, too. I wonder whether I’ll ever grow out of the habit, although I think, at my age, it’s highly unlikely!
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