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How To Have Tourette’s Part 3 – Sore Testicles, Diagnosis, Labels, and Basketball

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.”

This is Part 3 in a series.  If you need to back up, here’s Part 1 and Part 2.

Farewell my darlings...

Farewell my darlings...

After Part 2 of How To Have Tourette’s, someone who had listened to the audio asked an interesting question that has a strange answer. If you didn’t listen to the audio, my tics were kind of exciting that night and I made some weird noises.

Here was the question: “Do you make those noises all the time? I’ve never heard you make them in your videos.”

The answer is yes…sort of. I make the noises all the time, meaning daily or even hourly–but not constantly. They have to come out sometime, and if I clamp down on a vocal tic because I’m sitting in a meeting, it just means that my foot or hand or neck or shoulders are going to start doing something. It’s like there’s a measurable amount of lame-o symptoms that have to come out, and it can’t be stopped– only diverted.

The reason that it doesn’t happen during the videos is, oddly enough, because the videos aren’t about Tourette’s. This has always been my experience: when I’m around someone with Tourette’s, both of our tics get worse. When I talk about Tourette’s, something about having it on my mind stirs things up. Right now as I’m typing this I’m having tics that I haven’t had all day and it’s because I’m thinking about tics.

It’s been a morbid dream of mine to go to the national Tourette’s convention in Washington D.C., if only to see the asylum of hooting and gnashing teeth and writhing bodies and tics in children. If we all set each other off, multiply that number by a few thousand of us and WOO WOO! hold on to your hats.

It is exactly these sorts of questions I welcome and, to some extent, beg for. Thanks to all who have asked so far.

Now on to Part 3.

Getting Testy

Between second grade and my freshman year of High School, it doesn’t sound like much happened, Tourette’s wise. My tics were always there, but they were no big thing. It didn’t stop me from making friends and it doesn’t sound like I went around feeling sorry for myself.

I played little league soccer and baseball and learned that my tics were nearly always worse when I started breathing hard, but worse wasn’t that bad. Except for one thing that was usually just an annoyance but at times could be painful: I began tapping on my crotch–often much more forcefully than I liked.

This wasn’t the crazy compulsive masturbating that my mother talked about in Part 2 . This was a stupid urge to hit and rap and smack things with my knuckles–things that are better left unsmacked, at least without a safe word in place to protect myself. This resulted in a lot of stomachaches and groaning, but it wasn’t traumatic. However, much later when my wife and I started losing pregnancies, I found a way to blame my earlier testicle knockery.

The Diagnosis

Things changed in ninth grade. My symptoms had reached the point that my parents took me to get checked out by a doctor. They didn’t get much worse in terms of severity, but the tics were suddenly just as vocal as physical.

I have only the vaguest memories of going to that doctor. He said only that yes, it was Tourette’s, and no, it wasn’t severe enough to require treatment.  It might never require treatment.

On the way home, my mother tells me that I kept saying how relieved I was. That it was weird, it was annoying, but it was a relief to know that I had “a real thing,” and not that I was crazy.

As far as the vocal tics, they swung back and forth from excessive throat clearing to a really high pitched humming in the back of my throat. Sometimes it was a high pitched sound like this: dee dee, or sometimes deep deep deep. I’d need to do it in the middle of class and of course I tried to do it softly. But softly didn’t cut it. It had to feel right. I had to do it a certain way or it didn’t feel right. Remember when I talked about that feeling when you’re just about to sneeze? If I didn’t do it until it felt right, then it was like never letting the sneeze out.

Getting it right usually meant making it loud enough, which didn’t always sit well with classmates. During a math class in 9th grade, I kept clearing my throat so loudly that a boy named Steven Salazar turned around and yelled at me to shut up.

I was a pretty sensitive kid. I apologized and tried to explain, knowing it would get worse. He got angrier and I went in the bathroom and made myself puke so I could go home.

Calling the teacher

My mom got concerned enough about the amount of noise I was making to call one of my teachers and ask if I was being disruptive. She was pleasantly shocked when the teacher basically told her to back off and that yes, I was doing just fine. My teachers all loved me: I was a good kid who did his work and had good manners. Never a headache for them.

But that wasn’t why that teacher defended me.

“It is wrong to label kids,” she told my mom. “You can’t give him the idea that he’s different or he’ll always act like he’s different because he’ll think that he’s different.”

She says this put her mind at ease for the time being. I’m sure it was a relief–one less thing for her to have on her mind.

Basketball

This was my first year of high school sports. I was already very tall, at least 6’4″, and I was pretty coordinated. I also weighed 130 pounds and gave off a palpable frailty. You might have taken me in like a stray kitten. Okay, that’s a little much. But I was skinny.

Our team was good and we traveled a lot. My dual status as a tall, reasonably good player and twitchy weirdo with a giant red afro made me an immediate favorite of hostile crowds. And you’ve never seen hostile crowds like those in rural Nevada. There’s nothing else to do except go to high school games and yell.

I remember shooting free throws during a game in Reno as the crowd chanted “twitch twitch twitch.” I obliged. I also made the free throws and flipped them all off when we won. This was poorly received by my coaches and the fans of the team we had just killed with my dagger-like shooting.

That was my first hint that I could fight Tourette’s with anger and competition.  This would cause me a lot of problems later, but in those early days, as long as I could win at something, it stung less when people made fun of me. If someone called me a twitchy gimp, I could ask how it felt to get bested by a twitchy gimp.

End of freshman year

All in all, things were okay. I wasn’t popular, but I had friends. In a lot of ways I was the opposite of popular. For instance, at the end of the year we had the assembly where they give out the awards to students. Best of this, best of that, most likely to, et cetera.

I was shocked when they called my name. “And for the fastest typist in the school, Josh Hanagarne, please come down.”

That was the longest walk of my life. Those bleachers could have been the steps of Chichezn Itza. Top it all off, they gave me a blue ribbon that said “Best in show” on it. I’m sure that weeks earlier, it had pinned to some pig’s curly tail at the State Fair.

Thanks for reading. If you know someone with Tourette’s, please send this to them.

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Comments on this entry are closed.

  • Mac Wrigley July 1, 2009, 7:31 am

    Very interesting, I had no idea about half of this stuff. Also, I would like to add that “Testicular Knockery” would make a great band name. I’m just sayin’…

    • Josh Hanagarne July 1, 2009, 7:39 am

      Agreed and agreed. Do you want to start the band? As big as we both are, we could be a striking stage presence. We’ll get Yao Ming too.

  • flagmonkey July 1, 2009, 8:46 am

    Ah, the Steven Salazars of the world. I knew one of them too. Sometimes I’d like to meet him again.

    BTW: I think you linked the wrong embedded audio file.

  • Josh Hanagarne July 1, 2009, 9:19 am

    Marc, you’re totally right, thanks for catching that. Should work now.

  • Ragan York July 1, 2009, 2:08 pm

    Josh, I watched Nova the other day. They showed people drumming to control their tourettes. It was about music and it’s effect on the brain.

    • Josh Hanagarne July 1, 2009, 2:11 pm

      That’s awesome, Ragan. When I was 16 I started playing the guitar for about 8 hours each day. I got pretty good pretty quickly because it was always like a vacation to practice. Even now, anytime I watch TV, I have a guitar in my hands.

  • Ragan York July 1, 2009, 2:16 pm

    That Nova is an awesome program always interesting.

  • Sami - Life, Laughs & Lemmings July 1, 2009, 2:59 pm

    This series on TS is great Josh. It’s giving me a newfound understanding about the condition and what those suffering from TS go through. Thanks for sharing.

    • Josh Hanagarne July 1, 2009, 3:50 pm

      Thanks Sami. Hopefully it’s not too boo-hooish right now. Later I’ll get a chance to talk about how I was not suffering as badly as I thought–I just wasn’t up to it all mentally. Just trial and error and trowing up a bit. But thank you regardless.

  • We Fly Spitfires July 1, 2009, 3:45 pm

    Hi Josh. Just wanted to say that I’m really enjoying articles. I subscribed to your feed after seeing you on ProBlogger and it’s quickly becoming a favourite blog to mine. I really like your style, humour and tone. I also think your audio and video stuff is excellent – you have very engaging monologues.

    • Josh Hanagarne July 1, 2009, 3:49 pm

      Thank you! That’s a wonderful compliment that I will print out and pin to my chest in case anyone doubts that I am wonderful:0

  • Megan Horton July 1, 2009, 6:38 pm

    I like having a twitchy gimp for a brother.

    • Josh Hanagarne July 1, 2009, 6:55 pm

      It sounds nice. You are very fortunate. I’ll be talking about you punching someone on my behalf soon.

  • Megan Horton July 1, 2009, 6:57 pm

    IT IS NICE! The best. If only Kyle was a twitchy gimp too I’d be the happiest girl alive. I love that story of me punching out that guy on your behalf. Pure gold. I might need you to punch out someone on my behalf pretty soon because I’m having troubles. So, develop that punching tic again and then I’ll point you in the right direction. Sound like a plan?

  • Marie July 1, 2009, 7:25 pm

    I’m glad that you were good at basketball. At least you could stick it to some people who made fun of you in high school.

    • Josh Hanagarne July 1, 2009, 7:51 pm

      Sure. And now that I’m good at everything…well, not everything, I suppose:)

  • Kelly Diels July 1, 2009, 9:50 pm

    “Best in Show”. That is so freaking awesome. Do you still have it? Can I have it?

    you rock, Josh.

  • Vanessa Vezina July 3, 2009, 12:04 pm

    This is rawk star stuff. Fantastic.
    My 7 year old son has a rare type of Cerebral Palsy which often inspires him to do things like ROAR loudly in public, or kiss & pull the hair of other random children. Needless to say our family lives with some pretty fun tics too.
    A close friend of mine has a pre-teen daughter who was diagnosed with Tourette’s a few months ago. I just sent her this link.
    Keep it coming =^.^=

    • Josh Hanagarne July 3, 2009, 12:09 pm

      Thanks Vanessa. I hope your son knows how lucky he is to have your support. If he doesn’t, he will one day. You’ve made me realize I know nothing about Cerebral Palsy and will look into it more.

      I really appreciate it. Take care.
      Josh

  • Larissa July 29, 2009, 7:52 pm

    So I listened to all your audio and watched the videos a couple of nights ago, and I still wasn’t getting how “it just has to feel right.” Since my son was diagnosed, I have been doing a lot of reading about different people’s experiences with TS, and that is a common statement, but I was having trouble understanding it.
    Last night our family had hot dogs for dinner, and my son decided not to eat the bun, and it was lying open like a book on his plate. It had been a rough day for him, and his neck was really hurting, so I started talking to him about how he felt about this whole “thing.” His response was so funny, and yet it really helped me to get a glimpse into his thoughts.
    He said: You know, mama, I really don’t like moving my neck, and I really want to stop.
    I said: well, explain to me why it’s hard for you to stop.
    He said: see my hot dog bun? It’s open, but if I close it, it makes it right. Just like my neck. . it just makes it right.
    I said: well okay then 🙂
    So my nine-year-old’s explaination did it for me. I know I can never fully understand why his brain is telling him to do something it doesn’t need to do and how it leaves him in pain, but I can now accept that he just has to “make it right” 🙂

    • Josh Hanagarne July 29, 2009, 8:46 pm

      that’s a great story, Larissa, thank you. I usually go back to the sneeze analogy. It doesn’t feel right to hold the sneeze in. Good for him for knowing how to put it into such a clear perspective.

      • Renee March 4, 2010, 9:16 pm

        Hi Josh,
        I’ve been reading your story. I remember one of my body tics being squeezing my butt cheeks together real tightly, and the pain it caused. I remember crying to my mother about how much I wanted to stop doing it, and how much pain it was causing me, but being driven to keep doing it. I usually switched to something else almost without thinking about it, when what I was doing became too painful. As far as describing the compulsion to tic, I use the blinking analogy – try not to blink – for a whole day. That is what having to tic feels like.
        I’ll keep reading. It is a little hard to watch you tic, but I think if I keep exposing myself to it, it will make it easier for me accept mine.

  • Pia Eliasson February 10, 2010, 7:35 am

    Hi! I just found this site. Your stories are very interesting. I did also get a reward in school for being the one student that was myself all the time and least likely to change myself to fit in the crowd. Instead of letting ppl tease me or trying the impossible task to be like everyone else, I made my self stand out completely and dyed my hair and stuff. 🙂

    • Josh Hanagarne February 10, 2010, 8:34 am

      Thanks Pia. We are now a wolf pack of two.