Aware

Each year, I link a blog post on Facebook and call Tourette Syndrome Awareness month a success. In my mind, I check it off the list. I spread some awareness, time for a break—a 364-day break, well earned, I need the rest. Last year I linked my thoughts on the book Motherless Brooklyn, Jonathan Lethem’s story about a detective with Tourette. The year prior, it was that nonsense I wrote about Dominick the Donkey, a song always stuck in my head. Before that, a comic by Fish Lee. Right, I didn’t even create that one. As I did this each year, I thought, possibly, I could do more.

This year, I have. Tourette Syndrome Awareness month starts today. Inspired by some articles I read about Autism Acceptance Month, I vowed to step-up my game and do more.

Acceptance v. Awareness—where to focus? The autistic community made a shift over the past decade, a shift that I didn’t notice until this year. Autism Acceptance Month. Who isn’t already aware of autism? We all saw Dustin Hoffman’s sympathetic portrayal of an autistic adult in Rain Man, we get it. For decades, parents have tried to fix their autistic children. Instead, advocates now say, accept them, meet them where they are, don’t torture them by trying to change them.

But are we there yet? A friend described her son’s first pediatric appointment (only ten years ago) after his autism diagnosis. The doctor, fascinated by the diagnosis, wanted to know if the child did any ‘autistic tricks’ like math problems. We all know about the potential for savant attributes by autistics, but the rest? Are we ready to accept a violent grocery store meltdown at the other end of the aisle when we aren’t even aware that it’s fueled by autism?

I estimate Tourette Syndrome is decades behind autism in public understanding. We’re still waiting on our Rain Man. The movie version of Motherless Brooklyn? No way. No Dustin Hoffman. No Tom Cruise. Edward Norton stars—I don’t even know who that is.

Sophie, as a middle schooler, proclaimed that pineapple was the funniest word ever made. It worked as the punchline to any joke. Need a good laugh, blurt out pineapple. Tourette Syndrome occupies that same space. Comedians use it for a cheap laugh. Celebrities make egregious comments, when confronted, they joke that they have Tourette Syndrome. I can’t possibly count how many times I’ve seen foul language, or simply incongruous statements, explained away as Tourette. Even Stephen King, my favorite author, has twice (at least) used Tourette Syndrome as a punchline in his novels.

In Rain Man, a waitress handing Dustin Hoffman a toothpick, drops the just opened box on the floor. Toothpicks splatter everywhere. Hoffman stares at the pile and says “246 toothpicks.” Tom Cruise, noting that the box says 250 toothpicks on the side, is dismissive of Hoffman’s error. As they turn to walk away, the waitress notes “there are still four toothpicks left in the box.”

Tourette’s cussing is the equivalent of Dustin Hoffman’s toothpick counting trick. It serves as the stereotype but is actually rather rare.

In a small town like Gettysburg, it’s unlikely to encounter Tourette Syndrome in day-to-day life. Many of us with Tourette try our hardest to hide it. Those uncontrollable sounds and movements we make are often a source of embarrassment. The weird gestures and grunting noises, the strange faces and odd utterances are easily associated with the folks we see living on the fringes of society—the homeless, the mentally challenged, the mentally ill.

For awareness month, I hope to remind people that someone in their midst suffers from TS. I make those faces. I grunt. I blow air across my eyeballs. I do weird crap inside my mouth with my tongue. I get agitated, frustrated and embarrassed. I suffer from OCD and anxiety. I don’t cuss, except when I’m trying to make a dramatic point.

To expand awareness this year, I decided to parlay my employment with our countywide library system to help spread the word. A couple of years ago, the library was gifted lights to illuminate the columns of our headquarters building red and green during the Christmas season. Last month, we lit them blue for Autism Acceptance, I asked if we could change the color to teal starting on May 15. To give context to the people walking and driving by, I included a TS fact sheet in our weekly newsletter.

Do people notice this effort? A few might. As a final awareness effort, I’ll post this essay on Facebook where a handful of people might read it. Hopefully someone will learn something and maybe even share it. Small successes, incremental gains. Maybe one day, like our autistic neurodivergent cousins, we’ll be focused on seeking acceptance rather than awareness.

34 thoughts on “Aware

  1. Jeff, you stepped way up brother, this is awesome. I have a daughter who is disabled and mentally challenged. People still use the R word, it’s really offensive and ignorant. I’ll pass along the TS teal.

    Liked by 3 people

    • Thanks Biz. Are you in America? Americans make fun of anything they fear or is different or they don’t understand. Teal is a funny color. It took me a really long time to get he lights right because I really couldn’t envision what teal was.

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  2. You certainly are a leader and advocate for TS acceptance. I don’t live in your skin, Jeff, but I admire you for your forthrightness, for giving voice to TS concerns, for pushing ahead, and for challenging stereotypes.

    Liked by 3 people

  3. Awesome post Jeff! And good for you with the lights and fact sheet.
    I have a question… you’ve written about symptoms of OCD being present in childhood, but I can’t remember if Tourette was also showing signs then. Also, do you think your brain injury affected either OCD or TS?

    People *still* ask what Ben’s “superpower” is🤦🏼‍♀️ If he has an area of savant genius, we haven’t found it yet. I know a lot of people in the Autism and Neurodiverse Communities are offended by Rain Man as an example. TBH, it’s the easiest way for me to explain Ben. Limited speech, very particular, easily upset and toddler tantrums in a strong, man sized person.

    Sorry🤪 went on a tangent again… By spreading awareness, maybe you’ll feel more confidence too. If people understand the reason why, a lot may be more accepting. Not all, cuz some people are just jerks🤷🏼‍♀️

    Liked by 2 people

    • Right, for some reason, I haven’t written much about my childhood tics. I only remember 2 of them. One was a horrible high-pitched screech that thankfully I only did at home and only when I was in a room by myself (much like my grunting today). The other is a side bend jerk that I still do on occasion now. I wasn’t diagnosed as a kid. I don’t know what my parents thought of my tics (my dad claims not to remember) and I can’t really remember how they made me feel either. I know the side bend one was more of an issue for me because I I did it at school. All my tics went away in my mid teens when I started partying, and stayed gone until my brain injury. They’ve been present ever since. In my tourette facebook group, many people talk about their tics starting after mental or physical trauma. This topic often gets hot, because some people think they are saying that tourette can just appear and it isn’t a life long condition. Maybe I should write about all of this someday. Although I know from experience that people don’t seem very interested when I write about my childhood.

      Liked by 2 people

    • Also, it’s been a really long time since I saw Rain Man, but I seem to remember Hoffman doing a pretty good job with a lot of autism traits. Of course the card counting is what sticks with everybody, similar to how the tourette cussing does as well, so I understand the offense. I doubt I’ll watch the movie again because I loath Tom Cruise. I also think in that movie he essentially played himself. I’ll need to stick with my memory.

      Liked by 1 person

      • Yeah. It’s the “higher functioning” people who get upset. I’m not fond of functioning labels, or words like “severe” but there just isn’t a way to say “Ben isn’t kinda quirky and socially awkward” I think his actual diagnosis is “severe classic autism”🤷🏼‍♀️
        Dustin Hoffman did a good job in my opinion too.

        Liked by 1 person

      • It sort of makes me wonder why they got rid of the Asperger diagnosis in the US. The spectrum is so wide with different populations presenting very different issues. I think this lends itself to a lot of the anger about how the disorder is portrayed. TS is a spectrum too, but it’s really just varying severity of the same issues. Someone very ‘high functioning’ bears no resemblance to someone clinically disabled by the disorder. What are your thoughts on this?

        Liked by 1 person

      • I’ve read/heard Neurodiversity people say that people like Ben should be under the “disability” banner. But then there are levels of disability too. I think that’s part of the problem with the micro labels.
        Maybe if humanity could be more accepting and accommodating of all differences (🎶cue John Lennon) we wouldn’t need labels or “level of impact” words.
        With TS, Autism, whatever… we’re still comparing people with a Dx to “normal” people. What is “normal”? Everyone has something different… allergies, migraines, dry skin, acne, weird toes🤷🏼‍♀️

        I dislike language that furthers an US vs THEM mentality. Why do we “other” people?? To feel superior? To take their stuff?

        Having a Dx helps get proper treatment or support. Like a dx of diabetes helps get insulin and other meds.

        I got interrupted and forgot the point I making🙄🤦🏼‍♀️🤪 I don’t like micro labels but unfortunately, until there is more knowledge, acceptance and kindness/accommodations, I think we’re stuck with severity levels to help explain and educate.

        Liked by 2 people

      • Clearly, you’ve spent much more time thinking about this than I have. When I think of ‘normal’ I think it means the ability to navigate the world within today’s societal expectations. To some degree, in my professional and personal life I’m expected to interact with others in ways that don’t make them uncomfortable. I Have a hard time with that. I think that brands me as ‘different’ (abnormal?). Many of those areas you list (except maybe the toes) have extreme versions of the condition that would cause people to be labeled other. In my earlier life, I was pretty cavalier with throwing around that label. That I now put myself squarely in the other camp is just-desserts.

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      • Nah! It’s not Karma biting you. Young people are almost always dumb but think they know it all😂😂 I’ve had conversations with both daughters about how just a few years of actual “adulting” in the real world can teach us how much we DON’T know.

        I know we humans are social animals, a groups function better with shared ideas and values, but it seems that there’s been a real push toward cookie cutter conformity. Maybe it’s always been there and I’m just more aware of it now. Do we really want to become robots? If everyone is the same, how will there be any growth?

        I’ve kinda been on the outside most of my life. I’ve been accepted, but never really felt like I “belonged”. That plus the drama of my life, with two complete deconstruction and dragging myself back together, has given me a different perspective🤷🏼‍♀️

        Seriously though… I don’t think there’s anything “wrong” or “other” about you. Your reactions to stress may be different than mine, but they are what they are. Taking a medication to alleviate some of the OCD and/or TS symptoms is no different than my opiates for pain. They both improve quality of life. I think you are your own worst critic. I’ll bet your wife says the same😂

        Liked by 2 people

  4. I’ve certainly learned a lot of TS from reading your blog, thanks for sharing these bits of your life with us readers.

    Edward Norton is an excellent actor btw 🙂

    Liked by 3 people

    • At some point I’ll watch that movie. The book made me feel really bad about myself, but I’ve heard the movie is excellent and tells a really different story from the book.

      I guess there are probably a lot of people who know a lot about TS who wouldn’t otherwise. I’m that way with Autism. I knew nothing before I started reading blogs. Now I run around diagnosing everyone 🙂

      Liked by 1 person

      • No, he was in Motherless Brooklyn. I wonder if I’ve ever seen him in a movie. I don’t watch very many. They’re pretty much all initiated by my kids… so mostly Marvel.

        Liked by 1 person

  5. Jeff, this is a great idea. Cheering for your focus here: “Small successes, incremental gains.” This is important. Also, you model the normalization of this discussion, calling into question the “punchline” approach that was previously (sadly) normalized. Thank you for this.

    Liked by 3 people

    • My newest fear is that people called out for perpetuating stereotypes of disorders like autism and TS will just say people are being ‘woke’ and do it all the more to ‘poke those liberals in the eye.’ As a teacher, do you encounter many people with Tourette Syndrome?

      Liked by 1 person

      • It’s interesting, Jeff. In 20 years, don’t think I’ve ever seen this designation on a student’s IEP, and yet. I see a lot of kids with various tics. Some of these have other diagnoses (autism, etc. . . ), some don’t. I wonder how often Tourette’s goes undiagnosed, especially in communities like the one where I teach, where access to diagnostic services is sometimes limited. Your post was giving me new insight into some behaviors I see, which is yet another reason why I appreciate it.

        Liked by 2 people

    • Well, not quite the days of Noah, but my symptoms started in the early 70s. Of course no one knew ‘why I did those things’. But yes, I think environmental issues definitely play a role.

      Like

  6. Nice post, Jeff! I actually just listened to a book where the main character had TS. I didn’t realize it was a YA book when I got it from the library but wanted to hear about TS from her perspective. She put a lot of the same facts in – how sometimes she didn’t tell her peers because they would just assume she was going to yell profanities. But she described her tics well (I thought) as a need. She had a lot of compulsive behaviors too. The need to eat her food in a clockwise formation. At one point she accidentally slammed her finger in a car door and had to purposefully slam her other hand in the door to keep things uniform. And of course, she was a teenager and had to explain herself to a lot of weirded-out peers. It was called Forget Me Not. Anyway, great awareness/acceptance post! And that is cool you were able to get the lights at the library changed and to spread information in your workplace!

    Liked by 3 people

    • Hey Robyn, So in this book, was the story *about* the MCs Tourette, or was it about something else but the MC has Tourette? I Just beta-read a YA book (which I loved) where the character had TS but the story was about something else. A couple of other beta readers had told the author that they felt TS needed to be woven more into the story. I agreed with them (which I don’t think the author wanted to hear). But if this book is actually about something else, it sounds like it does a good job of executing what I was recommending to the author. I’ll check it out for sure.

      Liked by 1 person

      • Mr can my name is Robert j mcaree Jr ..I am writing you because I found all this ..I have had a rough life I can remember as far back as a kid I had problems banging my head to go to sleep as well as lash out I had seen.a Lot of docs and took a bunch of tests I had the paper work from all these tests but they were stolen …I remember I was on riddilin and I was ocd and ADHD very very hyper active attention seeking and let’s just say I ha some issues..I lost my mom when I was 9 and my dad when I was 22 and my wife when I was 23 ..I found her decesed it really took a toll on me I have a doughter she’s now 22 …I’ve used drugs any and everything I could get my hands on since I was 12 I’m 44 and I was born in 1978..i live in fwb FL .now in 2015 something happen to me I don’t now but I lost 3 – 4 days no recalection of where I was had done at had been ..but I wake up behingmd a dumpster at Hardee’s ..ever since I kinda see things before they happen but it’s by feeling I get these feelings and usually it’s when situations come about in the streets that they kick in …I see threw all the bull shit when people talk to me now I can tell a lie from the truth ..now I used to ocd as hell but that’s gone aways for the most park but I make people repeat them selves as I don’t hear it but I do …there’s just a lot of things new things going on that just came about I’m missing a big chunk out of my memory of the years I had growing up …I can’t remember what I did 5 mins ago but if you asked me what happens a year ago around a certain .. I can tell l you down to the t who and what I was doing …u live in the panhandle of Florida and I my number is 3053065447 and my email is justm331492@gmail.com….please message me I’d like to talk more I need help and I have no one …and don’t even know where to start ..I’ve also been homelesss 2015…like I said it’s been a rough life …not to mention some of these street people make it a mission to hate on people with misfourtions like this ..I never met a town where the people want to see someone fail at life so bad…you’d think theyd help in stead of make fun of slander my name everywhere I should sue the military as well as the town….

        Liked by 1 person

      • Hi Robert, I’m certain your community offers various nonprofit orgs that can provide help. Maybe start at a shelter or a library or contact the united way or the YMCA. Usually these places will have a list of resources where you can turn for help making changes in your life. To an old guy like me, 44 sounds pretty young. Lots of living left to do. I wish you the best.

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      • Yes, I would say it is mainly about Tourette and the MC’s experience with it. I mean, it is a YA book so she is also trying to get through school, develop a relationship, and her mom – but she is doing it all with TS. It’s not that long, so if you do get into it and can get past the juvenille stuff I thought she did a good job of explaining Tourette especially to that age group.
        That’s funny about your book and the age/appearance. I feel the same way!

        Liked by 2 people

    • Hi Robyn – thanks for the recommendation. I really enjoyed the book (in fact I read it in one sitting). I think the way Terry portrays TS as essentially being with you all the time, lurking on or just below the surface, is really accurate. I’ve read three young adult books from my ‘authors with tourette syndrome facebook group and they’ve all been excellent.

      Like

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