≡ Menu

How To Have Tourette’s: The Singing Stone And The Space-Age Bribes

A lot can go right in here...or wrong

A lot can go right in here...or wrong

I recommend listening to the audio version of this post. It will give you a better understanding of my symptoms.  You can click the audio player below to start listening.  Or if you would like to save the audio as an MP3 file so you can take it with you, please right click here and choose “save as.”

Well, we’re only one week into the series and I’ve already got a big fat correction to make.  After talking with my mom for a while, it turns out that I had my timeline confused.  I was six years old when I started having tics, which is pretty common for tics in children, but was not officially diagnosed until I was in 9th grade.  So from then until now in the story, I’ll do a bit of fact checking on the dates before forging ahead too wildly.

When we ended part one, I was still six years old, whether or not I had been diagnosed.  My mother’s first memory of the tics was during one of my school programs.

From ignominious thespian beginnings…

Neither one of us know what my part in the school program was.  If my later school performances were any indication, it was not an important role.  In fourth grade I was in the chorus in the most unholy, atonal school production of The Nutcracker ever cobbled together. All I remember other than how hot it was was that our school librarian did a bellydance routine during the Arabian desert song.  I was a lusty lad even then, although I imagine our librarian was not quite the sex bomb I’m picturing.

In fifth grade I was Little John in Robin Hood, despite having the largest head in the school, including faculty members.  My head is the same size now as it was in elementary school.

In sixth grade I was Jacob Marley in A Christmas Carol. I sang my first solo, “Being Tight Is Not All Right.”  It was a monstrosity.

So if we follow the trail backwards, on my night in the spotlight when my tics were discovered, I was most likely on stage trying my best to act like a singing bale of hay or a jolly stone.

Why is he doing that?

During the program, my mother says my face was going through all sorts of shenanigans and contortions.  Blinking, grimacing, mouth opening and closing like a large-headed grouper.  “Why is he doing that?” my parents asked each other.  Apparently it lasted through the entire performance, but I acted as if I didn’t notice.  Maybe I didn’t.

Cosmic bribes

Those were the years when for my birthday and Christmas, I insisted that every gift I ever received be either Star Wars– or E.T.-related.  Pictures of my room from our photo albums are the wet dreams of marketers everywhere.  Action figures, blankets, pillowcases, clothes, posters, slippers, stuffed animals…on and on and on and on.  But for all that I had, I obviously needed more.  My mom knew how to appeal to my basest instincts and manias.  This would cause her some guilt later.

A couple of days after the program, my mother told me that if I would “Stop doing that” with my face, she would buy me another Star Wars toy.  It worked like a charm…for about two days.  I stopped doing whatever I was doing with my mouth.  But two days later, my eyes had picked up the slack and were working double time catching on the screwiness.

She tried this more than once with the same results.  She believed that it was a matter of me concentrating hard enough–that it was a habit that I could break.  A behavior.  And of course, at the prospect of more swag, I would get excited, enter into these sinister pacts willingly, and then the symptoms would morph into something else.  And I wonder if I felt like I was breaking our deal.  I wonder if it upset me that I couldn’t concentrate as hard as she wanted me too.

If it worked that way today, I would be bribing myself, buying a few days of relief with extraterrestrial toilet paper, Jabba The Hutt prophylactics, and Han Solo kettlebells.

Watching and wondering

While Tourette’s research is far from cutting edge today, it was less so 25 years ago.  My dad came home one night and told my mother about a conversation he’d had with a co-worker.  The man’s son had Tourette’s and he had suggested to my father that maybe that’s what his own boy was dealing with.  He pitched this idea to my mom and she was able to scratch up a book about Tourette’s.  I don’t know what the book was and she can’t remember.

It didn’t do much to comfort her when she read about the symptoms.  Today, even though people who have heard of Tourette’s most often associate it with the uncontrollable obscenity and shouting, back then, apparently that’s about all they talked about, even in this book she had.

Well, that and all the weird sexual stuff.  She read study after study about these poor little boys who, according to the book, spent 90% of their school days with their hands down their pants or their weenies hanging out of their pants…this concerned her.  I picture her and my dad lying in bed at night, staring at the ceiling.  Suddenly she turns over and says, “Frank, get in there and make him sleep with his hands above the blankets.”

She may have envisioned me being forced to walk around in a sandwich board that said “Beware!  Future pervert!”

I never had a teacher call her to say “The boy’s having another go at himself and we’re all a bit put off by it at Farmington Elementary school.”  It didn’t happen at any other school either.  What she read was so far removed from what she was seeing that she convinced herself that me having Tourette’s wasn’t even a possibility.

To my parents profound relief, none of the hardcore drama hinted at in that book came to pass.  And even the worst of it all was years and years away.  So for the time…it was just the way it was and that was okay.

This is the end of Part 2. If you missed Part 1 of How To Have Tourette’s, you can read it here.

If you liked this post, please Subscribe To The RSS feed.

Comments on this entry are closed.

  • Chris Mason June 24, 2009, 10:43 am

    Hey Josh,

    I identify with many things you wrote. I started having tics around 7. I wasn’t disgnosed until my Senior year in high school. That leaves me with 11 years of being unable to answer questions from peers as to why I’m having the tics. My parents also offered me rewards for not having tics. They also thought at times I was doing it to annoy them. I can’t really blame them, though. As you stated TS was realatively unheard of 20 years ago….and those that thought they knew…..well, they likely knew about the swearing portion. I remember going to a Kansas City Royals baseball game with my dad. Before we left, my mom told me to not do those things so it would be an enjoyable trip. This was the same time Jim Eisenreich was playing for the Royals (he also has TS). It was TS awareness day at the stadium and they were talking about Jim Eisenreich having it over the PA. I asked my dad what Tourette’s was and he told me it is where a person swears uncontroablly. I spent a good portion of the game watching for Jim to burst out in obsceneties…lol. I was around 10 at this time

  • Josh Hanagarne June 24, 2009, 10:46 am

    I was in my baseball and little league heyday around that time. If I’d known that Jim Eisenreich had it, I might have wanted it myself.

  • Mac Wrigley June 24, 2009, 11:08 am

    Great job on this. I applaud you for being so open and sharing this with other people. Clearly, raising awareness and shining a spotlight on this condition is long overdue. You give a face to TS that brings it from the obscure urban myths and personalizes it. Keep up the good work!

  • Sami - Life, Laughs & Lemmings June 24, 2009, 2:54 pm

    Great post Josh. Raising awareness and helping people understand the truth about TS is awesome to see.

    Btw, I can totally relate to the “singing bale of hay” thing. If it makes you feel any better, I kept getting cast as a male. Lucky I have a good handle on my identity or it could have resulted in all sorts of complexes! 😉

  • Megan Horton June 24, 2009, 4:02 pm

    I didn’t know mom and dad tried to bribe you with toys to stop!! That’s bad. I’m sure they didn’t know any better, but shame on them! I remember your large collection of star wars toys. I remember us getting out your star wars toys, and he-man toys, my she-ra and my little ponies and having epic battles. Maybe I’m just hallucinating but I remember this. The good old days

  • Marie June 25, 2009, 1:22 am

    This may be my ignorance showing but here goes: why did it take so long for you to be diagnosed? If you started having ticks at age 6 or 7, how could you have gone another 7 years before getting diagnosed? Was it that Tourettes was so rare where you grew up or that generally there was little known about it?

    • Josh Hanagarne June 25, 2009, 6:34 am

      Marie, my understanding is that it was so minimal at the time that there was no reason to go see a doctor. I just had a few fidgets and so do lots of other people–so it didn’t seem like a condition or anything. Just some nervous habits. More of a small annoyance than anything.

  • flagmonkey.blogspot.com June 25, 2009, 10:42 am

    Do you make “those noises” every day? I didn’t realize them in your videos. But I do know somebody who does exactly the same since he was about 14. Now he’s at the end of his 20s and I never heard that he was diagnosed TS. He additionally can’t control his upper body and twitches all the time.

    • Josh Hanagarne June 25, 2009, 11:26 am

      At some point during the day yes, and it’s usually a lot worse. When I do videos, I talk fast and I’m a little less distracted. It’s kind of hard to explain. There are two things I’ve realized: when I talk or think or write about Tourette’s, I can count on it getting worse. If I’m around someone else with Tourette’s, we both get worse. I spend a lot of time each day trying to pretend it’s not happening. Writing about it–actively trying to think about it and express it seems to exacerbate the tics, and that’s part of what you’re hearing. If I do a video about Tourette’s, and I probably will, you’ll definitely see tics in it. When I’m talking about Twilight, Tourette’s is the farthest thing from my mind. Tell your friend good luck from me and let him know I’d be happy to talk if he ever needs it.

  • Adam T Glass July 4, 2009, 1:53 pm

    LMAO entertaining and enlighting Josh, well done!

    • Josh Hanagarne July 4, 2009, 3:36 pm

      Thanks! I saw that your blog is offline until August. I hope you’ve got your hands full of fun and not garbage.

  • Nancy Ward July 9, 2009, 12:51 am

    Hi Josh.
    I am enjoying reading your stories. My 9 year old son is currently in his eighth week in hospital while they are trying to sort out medications for his Tourette’s. He has severe ADHD, anxiety, OCD and other disorders that often accompany Tourette’s. My heart breaks for him as I see him already struggle so hard and he has been followed since he was 2 years old. I never noticed the tics until they were pointed out to me. He was seven at that time. He is already considered severe and I often wonder what his future has in store for him. He is an incredibly smart and delightful child. He has been experiencing incredible rage this past year and he is very aware of his disorder and frustrated with it.
    To emphasize how people misunderstand Tourette’s I wanted to bring up a situation I encountered. His much older sister was in a custody battle over her infant daughter. My granddaughter’s father dragged my son into the situation by trying to have the court order that my son not be allowed near my granddaughter (whom my son loves dearly). His rational was that children with Tourette’s grow up and turn into sexual deviants and molest little children. His request was obviously thrown out but it made me sick to think that anyone could think that way about an innocent child who already has so many obstacles to overcome.
    I will continue to read your stories as I think I can learn a lot more and maybe it will help me in our journey.

    • Josh Hanagarne July 9, 2009, 8:01 am

      Thanks Nancy. I feel for you both. Good luck, keep your head together if you can, and let me know if you think I can ever help you with anything.

      Much appreciated. I’ll be thinking about you both.

  • Jimmy T.Rets March 4, 2010, 7:20 am

    This is great Josh, thanks!

  • Katy March 24, 2010, 4:24 am

    i’m 16 and i’m in my last school year now, untill i finish my exams, i have struggled, so SO much, the past month, wit people being pathetic, i just feel so upset, and to be honest i hate myself right now, everything about me, my tics, the way i look my hair, and i never feel liek this, did you ever feel down and upset at school about it?

    • Josh Hanagarne March 24, 2010, 2:14 pm

      Katy, I’ve been there and I spent way too much time feeling down. If you’d like to send me an email through the contact form we can talk more. Things can always be better, I promise.