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How To Have Tourette’s Part 22 – Every Second Is A Choice

This past Friday I was in the dentist’s chair getting a tooth repaired. On the TV in the ceiling, the Joker said, “Because if you’re good at something, you don’t do it for free.” The music in the office was truly wretched, Muzak that somehow managed to get through the whine of the drill and The Dark Knight.

And I thought, You’re right Joker…now why won’t anyone pay me to punch myself in the face? Probably because I can’t plan on it.

The dentist put a temporary crown on the tooth that I just could not stop damaging every time I hit it. I stumbled out of that office back into the blinding light of normal life. I drove home and thought, well, that’s that for now.

The next day I was in the garden when I punched myself in the face. It was a good one. This is nothing new, but as far as I can tell, this was the first time two-year-old Max has seen me do it.

I could tell that he was just startled by the sudden motion, the dull smack, and the look on my face. He didn’t understand. He saw me in distress and worried. But–and I know this is silly–what I heard in his head was him saying: Is this going to happen to me? Did you give me Tourette’s?

He dropped his little shovel, took a step back, and started wringing his hands. I took a step towards him to tell him it was okay. Then it happened again. Wham! This time I had to sit down next to the hideous zucchini shrubs to clear my head. Suddenly Max was patting me on the shoulder. Then he put his arms around my neck.

And just like that, the choice was made.

I stood, picked him up, and we went into the house, where I spit out the temporary crown they’d given me about 30 hours earlier.

Family outing

While we drove to the store to find something to cement my stupid tooth back in with, I watched Max in the rear-view mirror. He was having small tics. Tics in children are hard to watch. I rubbed my jaw and wondered what was going to happen to him.

The rest of the weekend was fairly uneventful. But as we all know weekends have a way of coming to what always feels like a very abrupt end.

Monday

I spent most of Monday hitting myself again. When the crown came out this time, it was in three lovely pieces. No cementing it back in this time. I spent a long night annoyed because:

1. The cupboard was full of these children’s fruit snacks that I’m addicted to and I couldn’t eat them

2. Everything hurt

3. The tree outside my window is full of birds that start having a freaking party every morning at 4 AM. I don’t know what they are so happy about, so I can only assume it’s the sadistic glee they get out of rousing me out of my slumber

Tuesday

Back in the dentist’s chair. We’re all becoming great friends. Absence may make the heart grow fonder, but my dental pals and I are never going to find out.

Back Then

Back when my struggle with Tourette’s Syndrome was just an adorable little slap-fight–kind of how the UFC would be if the only fighters were the Jonas Brothers and the Care Bears–my parents still worried about my future, even though they had no reason to suspect that what I’ll call “The Great Season Of Foolishness” was on its way.

They wanted me to have the things that other, “normal” people get to have.

  • Love
  • Happiness
  • Success

Now

And now that my struggle with Tourette’s has become a war that threatens to swallow the entire globe–the equivalent of two coked-up, bespectacled  (yes, Tourette’s wears glasses and I suspect has late stage syphilis) tyrannosaurs with nothing to lose and no concept of collateral damage–my parents still have the same worries.

They want me to continue to have:

  • Love
  • Happiness
  • Success

And of course, I want the same things for my son.

Every second is a choice

Every time he looks at me…every time he has a little twitch…it’s all I can do not to apologize.

I know, I know. Not my fault.

But no matter how long I live, I’m never going to forget those two minutes in the garden, when he patted my shoulder and I hoped with all my might that he’ll never have to understand what’s happening to me.

But that doesn’t mean I’m going to dwell on those minutes and let them wreck me. It means that out of this experience, I choose to remember the feel of Max’s arms around my neck, not the knobby chaos of my own fists. I choose to remember the concern in his eyes, not the whine of the dentist’s drill.

Every second is a choice. In those moments I reacted with fear and sorrow, which was natural. Then I got over it and drove to the pharmacy. It’s Tuesday afternoon now and it still hurts like hell. I won’t be able to get the permanent fix until next Wednesday. I fully expect to knock the tooth out four times before then.

Boo hoo. I choose to spend the next week doing something  so good that it outweighs the bad and makes it seem laughable by comparison. I don’t know what it will be, but this post is step one.

And as to what will happen with Max in the future…if you’re a parent, you know that you can no more stop worrying about your kids than you can roller-skate to the moon. But tomorrow’s going to come no matter what.

It should never ruin today.

Josh

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Comments on this entry are closed.

  • Larissa May 5, 2010, 12:47 am

    Max is so lucky to have a dad like you, Josh. . . and it seems that you have a very sweet little guy there.

    And I think there should be a contest to see who can draw the best depiction of Tourette’s. 😉 He’s one ugly you-know-what. .

  • Steph May 5, 2010, 2:35 am

    I wholeheartedly agree with Larissa. In fact, you’re both lucky to have each other. Onwards and upwards!

  • Amy Harrison May 5, 2010, 3:28 am

    Your post reminds me that we all have brightness in our lives to cheer up our days.

    Sometimes you can just change your perspective, sometimes it comes in the form of an unexpected surprise, seeing a friend or having precious moments with family.

    For me, this morning, it was receiving your copy of The Knot in the post.

    The I remembered it had an inscription, so I flicked through to see it and am “chuffed” to bits. 😉

    Don’t forget about the brightness you put into other people’s lives.

    • Josh Hanagarne May 5, 2010, 10:21 am

      If you keep coming here, I won’t be able to forget.

  • Avil Beckford May 5, 2010, 6:11 am

    Josh,

    It’s such a blessing to be a part of your very personal journey and it’s a great reminder to quit the whining and don’t sweat the small stuff.

    Avil

    • Josh Hanagarne May 5, 2010, 10:20 am

      I still do some whining:) I just don’t write about it.

  • ami May 5, 2010, 7:38 am

    What great instincts your boy Max had. He was able to figure out exactly the right thing to do at the right time. Whatever the outcome from a genetic and physical perspective, you know you’re blessed to have a boy who cares and knows how to share that caring.

  • Susan Giurleo May 5, 2010, 7:51 am

    Josh, even if you son does have tics or full on Tourette’s, do you feel it’s possible for him to have love, happiness and success? It sounds like you do. And if anyone can set him up well to be ready to receive those things, it’s you (and his mom, of course).

    • Josh Hanagarne May 5, 2010, 10:20 am

      Of course I believe it. It happened to me, so I’d be crazy to think it can’t happen for him.

  • Srinivas Rao May 5, 2010, 8:17 am

    Josh,

    This is such a great reminder or presence. My favorite line of this post was “tomorrow’s going to come. But it shouldn’t ruin today.” I agree that every second is a choice and what we chose to dwell on will largely impact the experience we have in life.

  • Amy J May 5, 2010, 8:48 am

    There you go again, Josh. Reaching through the screen to touch my heart. *Hugs*

  • Michelle McGee May 5, 2010, 9:06 am

    Josh, your ability to share your innermost thoughts on TS with your readers is priceless. For people like me, moms of kids with TS, it helps me to see an adult living a full life with TS – a life full of good days and some bad days too. What helps is to see how you choose to deal with those bad days and put them in perspective. If your son has TS he couldn’t ask for a better dad to help him navigate his way through a life of ups and downs. It’s very hard to watch our kids go through stuff that can interfere with life, but it’s so incredible to see how resilient they are and to know that we are a part of that journey and can choose to give them the tools to manage the difficult times or choose to show them that fear of the future, if given the chance, will destroy your life. Max is one hell of a lucky kid to have a dad as strong as you. And you are one hell of a lucky dad to have a kid with enough compassion at such a young age to understand that sometimes you just need to give someone a hug – and that’s enough.
    I will keep you and your precious boy in my thoughts – sending nothing but good vibes your way, Josh. Jacob sends his best as well.

    • Josh Hanagarne May 5, 2010, 10:18 am

      Thanks Michelle. I hope that Max agrees with you when he’s older!

  • Stephanie Smith May 5, 2010, 9:43 am

    Josh,
    Do you ever make people mad? I ask, because when they read your posts as you share your ups and downs with such raw honesty,yet your hope and perseverance shine through, perhaps it makes them re-think the negatives in their own lives? I am not mad. I can only be glad that you provide a slap back to reality when I am drowning in one disaster or too many projects at once. I read your reality and realize: “buck up Stephanie -things CAN get worse!” Which I knew, but tend to forget, as we all get wrapped up in our own problems and lives. So thank you for reminding me that every day we have to put things in perspective.
    A minus thank you for reminding mne I need to have a cavity filled and I HATE the dentist – even though I have a great one, the smell in the office brings a wave of nausea and fear, and the gas does not make me laugh, it only makes the anxiety bearable. Oh well – hey- does he give you a mass crown discount? I know-bad joke- sorry. 🙂

    • Josh Hanagarne May 5, 2010, 10:17 am

      Not the worst joke I’ve heard today. Someone just emailed me and asked if I get a “punch” card:)

  • Lisis May 5, 2010, 10:45 am

    Hey, Josh… I can SO relate to the parental worry, and wondering if what you are seeing are “early signs”. In my immediate family tree we have such gems as bipolar disorder, schizophrenia, and depression. ANY time my son acts in a way that’s a little too this or a little too that, I catch myself worrying if it’s an early sign (and, if so, what to do about it?)

    I also experienced that moment of awareness when I first realized that he noticed my condition and that how I handle it will shape his world in so many ways. Ahhh… the joys of parenting. The unavoidable inner monologues we must endure simply because we love them.

    I know one thing, if Max does have to deal with this in his own life, then he is one lucky kid to have you as his dad. 🙂

    • Josh Hanagarne May 5, 2010, 4:27 pm

      I knew you’d be able to. Thanks for the pep talk.

  • Well it seems to me that your parents have nothing to worry about. I mean, you seem to already be filled with love, happiness, and success (I mean you’re the frickin’ rockstar of all librarians).

    Maybe this will be your “a-ha” moment to invent some new kind of indestructible crown for boxers that will make you rich beyond your wildest dreams.

    -Joshua Black
    The Underdog Millionaire

  • Andria May 5, 2010, 12:20 pm

    Wow. This is another brilliant post. You are doing wonders to educate us on what your world is like, and that takes so much courage. And your little boy sounds like such a gem. As someone else mentioned, he could be mimicking you, but if he is, that will certainly be beneficial to him in the long run, because you are not Tourettes….you are Josh, and Josh is a really fabulous human being whose words of wisdom and humor help make others’ lives better every day. That’s the best example any son could have.

    • Josh Hanagarne May 5, 2010, 4:26 pm

      I’ll cross my fingers and hope you’re right:)

      • Andria May 5, 2010, 5:30 pm

        I’m always right! 😛

  • Dave Doolin May 5, 2010, 1:26 pm

    I’m glad you’re able to drive.

    We live in a culture, a society, where those unable to drive – for whatever reason – are practically ostracized. Especially when they live outside the urban core of San Fran or Manhattan.

    Separating who you are from your emotions (and whatever condition plagues you) is incredibly important, and something I believe everyone has trouble with. You’re succeeding _inspirationally_ well!

    • Josh Hanagarne May 5, 2010, 4:26 pm

      Me too, although in my dream scenario, I live on a remote mt. top in Colorado and occasionally venture down into the city by helicopter. Also, I have the very long beard I’ve never been able to grow.

  • Melinda May 5, 2010, 1:31 pm

    I agree, you are the world’s strongest librarian, and I don’t just mean muscles.

    <3 Melinda

  • Matt Cheuvront May 5, 2010, 2:55 pm

    You’re an inspiration Josh. I wish I had something more eloquent to say here, but it’s just not in the cards. Thank you for continuing to do what you do here. Cheers my friend.

  • Lori May 5, 2010, 4:45 pm

    Boo hoo is right. More like oooo fong goo. Screw Tourette’s I say (and MS, too!)

    Lovely post, Josh. You’re the man.

  • Yusuf Clack May 5, 2010, 7:43 pm

    Josh,

    Talk about choices. You continue to take something that would send most of cowered in our bedrooms, covers pulled taught over head, and choose to share your personal struggles along with the life lessons as you see them.

    Have you seen Season 1 of the “Dead Zone?” Anthony Michael Hall gets a gift of extra sensory perception after being in a coma. His new abilities and mannerisms also ruin his “normal” life and he becomes an eccentric. He gets a glimpse of how nice his life could have been, had he not been in the accident, but then also sees all of the people that would not have been saved or helped by his newly developed affliction/gift. It made me think of you. You may not get time for TV, but it’s on Netflix if you get bored of American Ninja.

    P.S. Part 2 of your interview is up. Very Cool: http://bit.ly/aE5ngF

  • Hilary May 7, 2010, 9:01 am

    Hi Josh .. it’s amazing that you can write about it here for us .. and for Max to read later .. and you can still laugh about it – but as you say it’s the only way: get on with it – enjoy the good moments, all the good moments – they are worth so much.

    Thank you for reminding us of our good fortune – but also how determination has enabled you to find goodness and a way of letting the world know about this dis – ease … so many people need to know that they can help themselves too .. if they so wish. – I hope you have a good weekend .. Hilary

  • PicsieChick May 9, 2010, 5:04 pm

    Josh, this post of yours has been in my heart for days. I want to say that your experience of a body that does what it wants to is not unique to you or to people who have Tourette’s or MS or any number of other diagnosed conditions. But then I crumble and think hwo minimal my issues are in comparison.

    And yet, each and every moment is a choice for me as much as for you. And, although I haven’t broken my own tooth, I have had to sit out so many competitions and events in order to “heal” and “recover”…. and I’ve had that moment of being crushed to the floor from emotions in such turmoil there are no words, and, as the sobbing and tears escape me, surrendered to the kisses and hugs of my beautiful dogs.

    I Feel Max’s compassion and love. He’s a wonder. I feel your compassion and love and determination and hope to be half of what you are one day (and I don’t just mean in height, I might be at half already!).

    I have no idea what I’m trying to say here. Maybe it’s “I’m glad I found you” or maybe “I love you, man” or maybe it’s just “Thank you”

    Well, really, there isn’t much more, is there? Thank You. I mean this deeply. Please keep sharing yourself with us.

    Hugs and precious butterflies,
    ~T~