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How To Have Tourette’s Part 19: Sitting Here In Silence

It wasn’t even One PM yet and more than one person had already asked: “Are you all right?”

It wasn’t what you’re thinking.

I assured everyone that I was fine. In fact, I was better than fine, because at 12:30 I passed the four hour mark without having had one tic since 8:30 that morning. Four hours. Every additional second without tics for the rest of the day would be brand new territory.  So yes, I was all right.

And everyone nodded and moved on. A couple of them said, “If you need to talk, I hope you know that you can talk to me.”

Finally I asked why they thought something was wrong with me.

Silence

“You’ve been so quiet,” someone told me. “You’re usually such a talker. You’re such a light-hearted person that it’s kind of weird to sit here and see you sitting there in silence.”

Sitting there in silence. Sitting there in silence. I said the words to myself over and over and over. I am sitting here in silence. I am sitting here in silence.

Four hours became five.

I am sitting here in silence.

Five hours became six. “Are you sure you’re all right, Josh?”

I nodded because that was enough. I didn’t have to talk. I didn’t need to fill the air with words to distract myself or shut down tics. I didn’t need to be the life of the party. I didn’t have to be the most interesting person in the room. Suddenly I had what I had always wanted:

To be anonymous. And that’s when I realized the enormity of the occasion. I have never been permitted to blend in, and suddenly I could–or, I could blend in as well as any other giant.

I looked around the library at all the people reading, playing on the computer, wasting time, whatever–none of them had any idea I was in the room.

I am sitting here in silence.

Disclaimers and misdirects

The last twenty-something years of my life have been one huge disclaimer, one massive misdirect. “Yes, I have Tourette’s, but see how funny I am?” “Yes, I have Tourette’s, but wow, I’m so well-spoken, aren’t I?” “Yes, I have Tourette’s, but have I ever played the guitar for you?” “Yes, I have Tourette’s, but have I ever told you about the time…”

I was always the most interesting person in the room, largely out of self-defense. I won’t lie–it’s fun to be interesting. It’s fun to know that getting through another day in my life means ten more stories were born.

But now–there was no reason to divert conversations into safer waters. There was no reason to start conversations at all if I didn’t want to.

I looked at myself in the mirror during a break and wondered who I was. What will you do when you no longer identify yourself with Tourette’s Syndrome?

Ten

When I left work, six hours had become ten. I had passed an entire shift and only spoke when I was asked a question. I didn’t know what to do. Should I celebrate? Should I go make some noise? Was it time for a party?

I thought it was, so I drove home a little too fast. But when I got there and saw Max, I decided to just spend the evening on the floor playing with him. He started having tics a couple of weeks ago. He’s only two, which is way, way earlier than I started having tics.

Max and I being extremely serious for some reason

I don’t know what will happen with him yet. Maybe I’m wrong and I’m not seeing the tics at all.

Regardless, as we wrestled and I flew him through the air and he tried to lift the 106 lb kettlebell that sits on our hearth, all I could think of was this paraphrased quote from my beloved Kurt Vonnegut:

Nothing hurt and everything was beautiful.

And ten hours had become fourteen by the time I turned out the light.

Josh

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  • Jenn March 30, 2010, 12:16 am

    This post moved me.

    Last week I had a conversation with my husband discussing what it was like finding my identity apart from borderline personality disorder. It was longer transition that I ever would have imagined.

    Your paraphrased quote is a perfect thought for the end of a long day. Thank you.

  • Josh,

    Thanks for sharing this with us, I can’t believe the strides you are making it’s truly remarkable.

    You are always enough… you are always interesting, even in silence.

    • Josh Hanagarne March 30, 2010, 10:25 am

      Thanks Shannon. And there will always be strides backwards. Today is unfolding quite differently, although I’m not in a desperate state. It’s fun to be quiet, I’ve decided. Now nobody knows what’s I’m thinking and it’s bothering them:)

  • Hilary March 30, 2010, 5:13 am

    Hi Josh .. I think it is amazing and what a great place the net is to be able to share these revelations and for us all to read so simply about life – and see how you are overcoming it. Blessings to you all .. and Max especially – Hilary

    • Josh Hanagarne March 30, 2010, 10:26 am

      Thanks Hilary. I’ll tell Max you say hello!

  • Joy Tanksley March 30, 2010, 5:54 am

    Josh,
    I think this is my favorite post since I started reading your blog about a month ago. I don’t know what else to say. I’m crying before work, damn it. Thanks.

    • Josh Hanagarne March 30, 2010, 10:26 am

      It might be my favorite post as well. Please quit crying:)

  • Kris Wragg March 30, 2010, 6:00 am

    There is only one sentence that accurately portrays this amazing feat…

    YOU DA MAN!!

    Next stop, 24 whole hours of pure silent bliss! 🙂

    • Josh Hanagarne March 30, 2010, 10:26 am

      Kris, I may never make it longer than 14 hours, but that’s just because I like sleep too much.

      • Kris Wragg March 30, 2010, 1:24 pm

        It’s ok, as long as your master the art of not snoring or talking in your sleep then you can continue your silence 🙂

        • Josh Hanagarne March 30, 2010, 1:54 pm

          Kris, this just means that I’ll be able to slip across the pond and put you in a sleeper hold before you know what’s hit you. Beware.

          • Kris Wragg March 30, 2010, 2:24 pm

            That’s a pretty big swim! But hey, if you can cure a supposedly incurable disease then I don’t doubt you could swim the Atlantic ocean!

            But that would be a bit dangerous, after all, there are all kinds of sharks in the sea as depicted in little Ethans book 🙂

  • John March 30, 2010, 6:33 am

    Awesome and inspiring Josh. Thank you for having the courage to share your story with us everyday. It’s ironic, you mentioned not needing to be the most interesting person in the room, but I think this is the most interesting post I have read on your blog. Funny how life works.

    • Josh Hanagarne March 30, 2010, 10:27 am

      It might also be considered ironic that I say all I want to do is be anonymous but I’m here trying to write a blog that 100,000 people will eventually be reading:)

  • Geoff Neupert March 30, 2010, 7:45 am

    EXCELLENT, Josh! Congratulations!

  • Joshua Black | The Underdog Millionaire March 30, 2010, 7:56 am

    Once again, excellent work. It’s really powerful that you can share your journey on overcoming your ticks with the rest of the world. As for your son, he may just be copying your facial expressions. I have a friend that has ticks and his son mimmicks his movements as well, although his son has no issues. Perhaps your son will mimmick “doing nothing” as well.

    I think that you should create a product about doing nothing.

    I use breathing exercises in my martial arts practice as well as when I am creating new products, and I think that a lot of people could benefit form what you have learned in your own testing.

    -Joshua Black
    The Underdog Millionaire

    • Kris Wragg March 30, 2010, 8:01 am

      Joshua, that is mirror neurons doing what they do best, copying other people.

      I really hope that he’s just copying Josh, but if not I’m sure that Josh will be cured long before his sons tics become a major problem and he can help him too 🙂

    • Josh Hanagarne March 30, 2010, 10:28 am

      Interesting idea, Josh, thanks.

  • adam March 30, 2010, 8:02 am

    Oh friend, how boring this post will by mid April when the post reads 12 days no tics. Or a year from now when it’s # of months without tics

    March on brave drummer

  • Srinivas Rao March 30, 2010, 8:55 am

    Josh,

    Thanks for sharing your progress with us. Every time I read one of your posts about your progress I share with my friend who has tourette’s. You really make it possible for a paradigm shift in terms of what the mind is capable of.

  • david March 30, 2010, 9:00 am

    I actually said to my girlfriend last night… it’s going to be pretty amazing when one of these days in the next month Josh goes to bed not having had one tic for the entire day. Once again, the only flaw in my prediction was that it happened much more quickly. Amazing Josh.

    The earth is flat, etc.

  • Giulietta the Muse March 30, 2010, 9:17 am

    Hey Josh,

    Great writing! I ditto everyone else’s comments. I’m happy you are making progress. I also understand how this will further shape your identity. Frankly, I loved reading you are the life of the party, defensive move or not. We need more “life’s of the parties.” Thanks for being that bright light.

    Imagine a world where people fill the air with vibrancy!

    cute pic of you and your son. I wish the very best for you.

    Giulietta the Muse

    • Josh Hanagarne March 30, 2010, 10:29 am

      He is cute, isn’t he? It’s a shame he’s eventually headed for my face.

  • Mirella McCracken March 30, 2010, 9:41 am

    Amazing control! I admire you Josh!
    Good job
    Mirella

  • Mirella McCracken March 30, 2010, 9:44 am

    I wanted to tell you that my brother had tics when he was young, but then it disappeared one day. He is 46 now and I cannot even remember when he had it!

  • Heather March 30, 2010, 9:59 am

    CONGRATULATIONS!!!!!!!!!!!!!!!!! ISN’T BEING YOUR OWN JOYOUS SUNBEAM GREAT?!?!?!?!?!?!?!?!?!??! What’s even slightly funnier is that you were freaking people out, and you didn’t even mean to, you were just sitting there, living your life, being YOU! YOU SANS TICS! Congrats again and Max is adorable! He’ll be fine! Just keep on doin’ what you do, and show him how to do it too. Will have to watch Adam’s vid at the house, am currently trapped at work. CONGRATS!!!!!!!!!

  • Lisa March 30, 2010, 10:31 am

    What a beautiful thing. Sitting here in silence.

    Thank you, thank you.

  • Greg March 30, 2010, 1:44 pm

    Congratulations on your progress.

    Listening to your struggles resonates more with me as I watch my son. I can see him developing tics. Popping of fingers or chasing of nails. As I’ve watched, I can see similar beheviors in myself, many of which I gained *some* measure of control of through music. I can only hope my son finds some measure of release as well.

    I think that’s one of the hardest things we must do as a parent. Watching our children struggle to cope with the things that plagued us…

  • Annemieke March 30, 2010, 3:00 pm

    Wow, 14 hours. I am impressed. And I really hope your son was indeed just copying.

  • Colin Wright March 30, 2010, 5:27 pm

    Josh, that’s fantastic. Keep up the good work – whether that means being the life of the party or keeping dead silent – and we’ll keep being inspired by it 🙂

  • Pauline March 30, 2010, 7:38 pm

    “Nothing hurt and everything was beautiful.” Wonderful phrase, and I think I will use it as you did! I’ve had a few times I could say this in the past 30 years, and when it happens it makes me speechless . . . . May you and Max enjoy each other forever.

  • Yasuo Long March 31, 2010, 4:50 am

    Josh, I just wanted to say I really enjoy your posts.

    Congratulations with making it through the entire day, I know what its like to have to constantly feel like you need to misdirect in order to make your tics less obvious.

    People who don’t go through it don’t realize how great it is to just be able to sit and be silent.

    Good luck, God Bless, and keep writing.

  • George March 31, 2010, 12:17 pm

    Josh,

    Great post man. Have been sharing this with clients and my co-workers today.

  • eric March 31, 2010, 8:06 pm

    Josh, Do you know what it is that has caused your tics to disappear/subside? What was the frequency of tics previously?Eric

    • Josh Hanagarne March 31, 2010, 8:24 pm

      Eric, I was having violent tics every 2-3 seconds for the last 10 years. I do know what’s helping now. It’s some things I am doing with movements and work I am doing with Adam Glass and Frankie Faires. I can’t say too much about it yet. I’m already getting too many desperate emails that say “How do I cure myself?” and that is not a question I can answer. I’m still having a hard time about 80% of my days. But that % is going down and the process is speeding up. Whenever someone with Tourette’s contacts me, I’m doing my best to talk them through it, but I’m not ready to just put it all out there yet. Much, much more experimentation is required.

      thanks for the comment!

  • mike sheehan March 31, 2010, 8:08 pm

    you have a beautiful son josh, you are amazing keep up the great work

  • Cat April 1, 2010, 12:07 am

    Wow! So cool. And what a thoughtful response to such a significant milestone for you.
    I understand your concerns for Max. I suffer from food intolerances and had lots of concerns about my daughter having the same problems. Did lots of things to avoid it for her; apparently not enough. She now shows symptoms too. But recently I have begun to wonder if my talking about my issues in front of her has in some way created her problems. She wants to be like me… Has the power of my fear pushed the universe to create…
    That’s pretty metaphysical, I know. But maybe if you release your fears about Max, and as Tourettes becomes less and less how you identify yourself…Max will cease to exhibit anything like tics. AND, since Tourettes is becoming your friend, you will model that attitude for Max, should he need it.
    I’m going to take us both to see a good accupuncture practitioner soon. (they have a solution for food intolerances) We’ll have to sit very still. I’ll think of you.

    That which does not kill me, makes me stronger. -Nietzsche

  • Marti D April 9, 2010, 9:05 pm

    Hi Josh,

    My son was diagnosised with TS when he was 5 years old. For several years they were pretty frequent and very obvious. About 3-4 years ago I started to think they weren’t as frequent. At first I thought I was just so use to them they were becoming less noticable to me but as time went on they started slowing down. Now he is 17 and while he isn’t tic free they are to the point that if you are just meeting him for the first time you probably won’t pick up that he has TS.

    I understand the silence after years of tics. In one sense you are relieved to not have the tics but at the same time they become a part of your “normal” and when they disappear the silence seems “abnormal”. At least that was our experience.

    Thanks for always being willing to share your life with your readers. 🙂

  • Erin Z. March 5, 2011, 11:15 pm

    Our older son (4) has TS (not officially diagnosed, but I know, as his dad has it) and our younger son (2) does an incredibly cute tongue thing that I am positive is a tic. Looking back, I wonder if our older son was ticcing at 2 as well, but had the benefit of my oblivion. My advice, not that I’m qualified in any way except as a mom, is to try as best you can to not look for tics in your son. He is beautiful. He’s perfect. Enjoy every moment and take what happens. I’m working on following that advice too.