I encountered someone with Tourette Syndrome last week—I think. Their tics, facial twitches, were subtle. I stared too long and probably got caught. Still unsure, I stared some more. Once I decided I had it right, I wanted to walk over and say “Hey, me too! Tell me your story.”
Susan said “Don’t, it’s none of your business.” Sometimes people don’t know. I didn’t until I turned fifty. I blamed my unrelenting eye tics on dry eyes. The ophthalmologists I saw six or eight times didn’t figure it out either. When the grunting started, we put the symptoms together.
I outed a guy once. He had the classic eye tic, a repeated long squeeze. I asked his girlfriend if he knew. She didn’t, and she had no idea if he knew either. “He’s pretty private, I don’t know if he would tell me.” I never asked her if they talked about it.
You might wonder why it matters. Maybe it doesn’t. It did for me. Besides avoiding a half dozen useless eye appointments, several mental health conditions usually accompany Tourette. With my diagnosis and subsequent research, my mental baggage, especially my undiagnosed OCD, suddenly made more sense.
For me, Tourette is a lonely disorder. I’m in a couple of unsatisfying Facebook groups. In flesh and blood, I’m all alone. I saw my recent encounter as a chance to build a community. To Susan: “What if I ask a mutual friend?”
Again, “Don’t do it. It’s not appropriate.” She’s right of course. If someone approached me before my diagnosis, I would have been confused and/or embarrassed and/or offended. I once asked a twitchy guy at the gym.
Me: “Hey man, do you have Tourette Syndrome?”
Twitchy guy: “Only when I forget my meds.” He walked away shaking his head.
Possibly, my encounter will resolve itself in the future. While many in my orbit swear they don’t know I have Tourette Syndrome until I tell them, they certainly see my tics. Maybe the next time this person and I wind up in the same place, which happens now and again, they will approach me. Maybe they will say something to feel out what I know about myself. Then I can start to build my community. Or possibly they have no idea they have Tourette, and they wonder why I make the same faces as them.
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Pronouns: I wrote this story with gender neutral pronouns to further anonymize the encounter. I’ve noticed that my kids generally use genderless pronouns when talking about others. This eliminates errors when talking about their non-binary friends. Leaving non-binary pronouns aside, dancing around pronouns in this story seems to violate everything I believe about writing.
Photo by Joel Reyer on Unsplash. The tag I searched was “Alone in a Crowd,” a phrase that seemed to fit the narrative of the story. The photo is a poor fit, but I really like it.
The Other Stuff 
No doubt I will ponder aspects of identity, community and self acceptance over the next few days. There are also questions around friendship to think about too.
Despite always being tempted to offer advice, I am not wise and will refrain.
Luckily you have Susan et al.
Thanks Jeff.
Be well and do good.
DD
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Thank you for the care and consideration you reserve for my blog.
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You always write in an interesting way. Here you have provoked me to think about issues on what I see as the community-identity/ acceptance spectrum and related community-friendship spectrum. I am sure they overlap but struggle with how. Maybe I am struggling to keep up with social change.
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When I saw a man with a scar on his back earlier this year I asked, ‘Which level?’ We fell into conversation about lumbar fusions – his was one higher than mine, and a couple of years older – in that easy companionship that shared medical issues can provide. I don’t know if there’s an easy way to broach this with a stranger who may/may not have Tourettes, but being the frank sort that I am I would probably have asked.
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As a person who struggles to converse, a discussion about a shared medical issue puts me in a rare comfort zone. I think that’s why I’m looking for that connection. This one is tricky because a lot of disinformation, shame, embarrassment and secrecy surrounds the disorder. And of course all those people who don’t know they have it and are just frustrated by their twitchiness. A scar (or a scarlet letter) would help.
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I’ve never known anyone with Tourette who talked about what it’s like to have it before. That’s so important, I think, in dispelling the mystery and helping people understand it.
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I started blogging about the same time as my diagnosis. TS and writing are pretty well linked in my practice. I’m happy to help demystify TS, It’s a really strange disorder and easy to misunderstand (especially with the prevalent media portrayals).
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Thanks so much for this, Jeff. Similar situation when I see someone in a random place who looks they’re enduring chemo… at least 99% sure… at once wanting to connect… to give them a knowing nod or a fist bump… and maybe even a warm hug… yet keenly aware that they might just be a private person… or maybe they just want to forget being a cancer patient for a while and don’t need any reminders.
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I know. Don’t you just want to go over and talk to them? Who could possibly understand you better.
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I have very dry eyes. I am on prescription eye drops for the condition, and also do eye exercises. Often, I will squeeze my eyes shut on purpose in an attempt to make tears. I do this in public places like the gym and airports. No one has ever approached me asking if I have Tourettes. Then again, I have an awesome resting-bitch-face, so I probably scare most people away. linnie ❤
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I can’t keep up with your multiple identities. So long as you’re sure it’s just dry eyes. I think most people with TS eye tics thought they had dry eyes at one point. I sport a killer RBF too. Susan always walks up to me and says ‘smile with your eyes.’
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I should prob change my name to Sybil. And yes, just dry eyes … as I’ve only had this problem since I got old. Tho, like you, I also have OCD (and obviously some anxiety issues– but don’t tell anyone!). And new identity is private, so I think I will be good (for now). I’m much calmer when I’m behind the curtain. 🙂
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Building community is so important. I hope and trust you’ll figure out a way to find an appropriate entree. You could always say something like, “Wow, my eyes are bothering me today. I’m so grateful that I figured out it was Tourette’s after many years of trying to solve the wrong problem.”
It’s a funny note about the pronouns – I didn’t notice until you mentioned it. A hard thing to do well and I think you did.
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Yes, I’ll need to strategize my approach. Really hoping a mutual friend reads this and just connects us.
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You raise an interesting question, should we connect and over what, it’s hard to make friends and gets harder as years pass, I think my age group struggles with things they younger generation takes invite stride such as identity. So many thoughts.
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About 30 years ago I read a novel about a group of young adults in a small town who bonded over alternative music. In the last scene as the protagonist drove out of town he saw a car with band bumper stickers and realized that he missed an opportunity to connect with one of his tribe. Sometimes deep connection can occur over something seemingly superficial. I’m always envious of people who make friendships easily. Really hard for me.
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Hey Jeff,
Braden the Caffeinated Philosopher posted ‘this’ poem about his experience of Tourette’s: https://caffeinatedphilosophyblog.wordpress.com
Cheers
DD
PS I copied him in on your post.
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Thanks DD. I actually read it when it was posted on Lifesfinewhine, but it was nice to read again. CP’s point about needing to ‘do it right’ or do it again is a really annoying aspect of the syndrome. I’m fortunate that I don’t have the counting compulsions any more. Those were present when I was a teen.
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When I was living in London a few months back, I was in Harrods spending a gift voucher I got for Christmas. I could afford some nice cufflinks with it. To my surprise the person selling them had Tourette! If not Tourette, certainly another tic disorder.
Because I was with colleague, I didn’t ask them, however i I was alone I absolutely would have. It seems such a lonely condition, I would have been delighted to chat, if they did. Oh well, I will never know!
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I saw the person in my story again yesterday. I was ticcing like crazy so I guess if they want to talk about it, they will because there isn’t much doubt I have TS. I live in a pretty small town and I don’t know any adults with Tourette. Seems like it would be nice to hang out and commiserate (or at least compare notes).
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I feel the same way when I see someone that I think might have ocd. I don’t k own anyone personally that has it and when I think I see someone that might…just maybe also have it I want so badly to say something like hey me too. Of course I don’t but I often do wonder what it would be like to actually have some friends that I can hang around with that truly understand what its like.
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I was once participating in a drumming circle at a local art-space, and two people happened to arrive with prosthetic legs. They were immediately best friends, comparing hardware and injuries and experiences. I think those of us who feel ‘othered’ crave this sort of connection. I know bigger municipalities have support groups, but my town is just way too small.
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