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How To Have Tourette’s Part 29 – Back To The Drawing Board

Yesterday in the library a man told me “If you are going to walk around honking like a royal swan (a bizarre phrase that was the only silver lining) you don’t belong in this library.”

He was rude. I was mad. I embarrassed him and embarrassed myself as well, while pretending it was funny.

The realization that one might not actually know what one is talking about is uncomfortable. To step onto a path that was supposed to be familiar and realize that you have no idea where you are.

This month I have suffered a massive change of direction that I’ve no doubt I will be able to turn into a strength one day; to look back and say “That was a period of worthwhile instruction.”

Today is not that day.

Today I’m simply upset at how easy it is to overestimate my own intelligence, to say I know things I don’t, to step closer and closer to the edge of being brought low, while assuming that the worst is behind me.

Nothing changes the fact that I have made enormous strides in treating my own Tourette’s Syndrome.

Nothing changes the fact that I went for one full month without even the slightest tic to speak of.

Nothing changes the fact that the story has inspired many, for which I am grateful.

Nothing changes the fact that I chose to prematurely and imprecisely use the word “cured.”

And unfortunately for your twitchy librarian, nothing changes the fact that this past week has seen some of the most horrible tics of my life, and I have been put in more pain that I have memory of at any other time.

I can’t lift. I’m having trouble eating. Typing is an effort. Breathing is a chore.

This all annoys me.

I’ll fix it. I’m always able to work it out. My mental faculties are relatively unaffected, but my body is a mess.

It is time to ask more questions.

For anyone who has looked to me for answers with your own movement disorder, I still believe in the premises I have laid out. But they are obviously just fragments of a larger solution which I can only glimpse the edges of. Otherwise, I’d already be feeling better.

There is more and I’m going to find it. Or I will exhaust all options in the process of trying.

I’m sorry if this news discourages any of you with Tourette’s or brings you down. But I’d rather be honest with you than pretend things are great right now. Maybe they will be tomorrow, but it’s been a hellish seven days.

I am going to rededicate myself to study and research. There is some encouraging study coming out of Yale and UCLA. Sharing the worthwhile work of others is largely what I will now be doing as I continue the How To Have Tourette’s series.

Thanks for the support and patience. I am truly sorry if I have misled any of you.

Josh

 

Comments on this entry are closed.

  • Carly May 18, 2011, 12:53 pm

    Josh, we love you and just enjoy being on the journey with you. Thanks for your continual willingness to share insight and humor, even in the face of chaos.
    Stay strong!

  • Patrick Tracy May 18, 2011, 12:56 pm

    Josh,

    You’ve taken control of your movements before. I’m certain that you have the fortitude to do so again. I hope your current troubles are short-lived, and that you gain deeper understanding of your condition in the end.

  • Amy May 18, 2011, 12:58 pm

    Josh I’m sorry that the tics have been worse. You haven’t misled us, you have told us what works for you and sometimes that changes. Does the weather have an effect on your tics? I was just wondering because I’ve noticed that when the weather flip flops between hot and cold like it has been doing lately that Lane’s tics increase. I don’t mention it to him, just make a note of it.

  • jon burroughs May 18, 2011, 12:58 pm

    Please, do not be disheartened! All progress is met with setbacks, and the library is full of stories of perserverance and ultimate success. Your readers are pulling for you, Josh, and this setback does not detract from the amazing achievements you have accomplished so far, nor does it disprove your theory. It is an opportunity to learn, elaborate, expand, refine, adjust, elucidate, and if there is anybody on the planet equipped to do so, it is you, Brother, it is you.

    Best regards,
    Jon Burroughs

  • Tomas May 18, 2011, 1:00 pm

    Don’t give up, Josh. You WILL make it through!

  • Larissa May 18, 2011, 1:01 pm

    I am sobered by your honesty and humility, Josh. You are still in the hearts and minds of my boy and our family. Take care.

  • Grmble May 18, 2011, 1:05 pm

    Oh damn, I was rooting for you.

    But still, even with this set back; you know now that it is possible for you to have relatively long, uneventful periods. There will always be times when things are not going well, but you too can have good times, and you will have them again.

  • CINDY May 18, 2011, 1:18 pm

    i don’t get to follow your blog, but only occasionally catch it but i have to say that each time i have i have been struck with how wise and real you seem to be.

  • Dave Currie May 18, 2011, 1:31 pm

    Josh, I believe that you can find a way. Dave

  • Pauline May 18, 2011, 1:44 pm

    To quote Carly, above, “Josh, we love you and just enjoy being on the journey with you. Thanks”

    We are with you all the way.

  • Daisy May 18, 2011, 2:10 pm

    You have my support. I run into discrimination and rude people in the workplace, too. I teach, and I am hearing impaired. My own journey to document the hearing impairment and seek reasonable accommodation.
    It’s sad that instead of looking up to our successes, people will look down on us for our disabilities, when our disabilities are such a minor part of who we are.

  • Keri May 18, 2011, 2:23 pm

    This is a beautiful post. You have nothing to apologize for!

    I have bipolar disorder, and in my own life I’m found that having a disorder necessitates a lifelong learning process… Just when you think you have it all figured out, something new comes up, or what was working doesn’t work anymore.

    Also, I think there’s a whole cultural narrative about “battling illness” that’s very harmful. Fighting to overcome something that is a part of you doesn’t help, it just hurts. I’m not trying to preach or anything, just sharing my own revelations regarding myself; I know everyone is different. Personally, I’m grateful for every part of me, including the dark and disturbed parts, because they make me who I am. My range of emotions and experiences makes me deeper than I would have been otherwise.

    I try to think of my disorder as not something to fight or overcome, but something to learn about and adjust to, something to learn to live with. I can’t separate what parts of me are because I’m bipolar and what parts of me are just “me”. All of it’s me. And I don’t want to fight myself =) If there was a “cure”, I wouldn’t want it.

  • Jodi Kaplan May 18, 2011, 3:10 pm

    Damn damn damn damn damn

  • Heather May 18, 2011, 4:19 pm

    Josh, I support you 100%! Stay as strong as you can buddy! Oh yeah. . . . take a deep breath and relax, too. . . sounds like it’s causing stress, which may exacerbate your tics somehow. Don’t stop working on it. You’ll get it back, and everything’ll be ok. . . . just breathe man!

  • Andrew Hamblin May 18, 2011, 11:04 pm

    That which does not kill us only makes us stronger. Seeing your determination to keep going is an inspiration.

  • Laura May 19, 2011, 2:13 am

    I have the same ups and downs with an undiagnosed hip issue, I think I have found the solution and then I am right back in pain and feeling defeated. Remember that in these set backs, the motivation to find a new way, a new solution or piece of the puzzle is at its strongest. I always benefit in some way from these times when they are over, even though it’s hard to see when you are in the middle of it.

    ‘Nothing in the world can take the place of persistence’

  • Todd May 19, 2011, 5:15 am

    That dude was an asshat! Unfortunately, in the past, I’ve been that asshat.

    Josh, remember, we’re not as smart as we think we are. When we start to feel that way, God has a way of pimp-slapping us back into reality.

  • Frances Ruth Harris May 19, 2011, 5:27 am

    Josh, it is good just to be a part of your journey. Thank you for this opportunity this blog gives us. You are evolving as we all are, so enjoy the ride! The best is yet to be. Never give up; there will always be surprises! Best wishes for new discoveries!

  • Piers McCarney May 19, 2011, 6:01 am

    Josh, I believe that the more data and setbacks you experience, the more you will be able to contribute to the success of those who also encounter reversals and surprise difficulties walking a similar path.
    A sad occurrence in that it troubles you; a joyous occurrence for those you will help more greatly by association.

  • John May 19, 2011, 6:40 am

    I’m with Keri…you have nothing to apologize for. I imagine that your honesty in this post will continue to inspire those that read it (as it inspires me) rather than give people a reason to question you.

    I am truly sorry that you have experienced a setback, but as so many have said I am confident that if anyone has the will and strength to overcome it, it is you.

  • Stuart Atkins May 19, 2011, 8:40 am

    Thanks for the honest post. Sorry for the tough days you are having.

    Just some thoughts from one with tourettes for over 45 years. Perhaps you are tying too hard? The complexity of the human brain rivals even that of the cosmos. We can’t always control the physical frustrations of tourettes, but we can control our acceptance and responses. Overall, you do a fantastic job of that, in both your humble honesty and your life successes.

    The Apostle Paul had a “Thorn in the Flesh.” It kept him humble and it frustrated him (No one knows what it was, but I bet it was TS :). He said in his weakness it made him strong. I love the metaphor and it has helped me in the acceptance phases of my tourettes. Josh, in your weakness, I see strength. Thanks for that courage.

    As for public comments, that guy in the library was a jerk. It was his problem and not yours. All of us with TS learn to live, or I guess try to live, with those public attacks. Again, his problem and not yours. That must have been very tough. Give him my phone number and I will be glad to talk with him 🙂

    So, for what it’s worth–perhaps you are fighting it too hard? I often do. Be patient with your brain and yourself. Don’t be so hard on yourself. It’s a journey and you are traveling it well.

    One Tic at a time…

  • Boris May 19, 2011, 11:32 am

    It’s all a journey and a learning experience – I know it’s easy for me to say that. Just keep plugging away.

  • Bob and Lynn Taylor May 19, 2011, 1:00 pm

    Josh,
    You are amazing. We admire you willingness to be so open, to share, and to help so many. You are compassionate beyond compare. You can make it through this and will learn even more to help others. That’s what you do. Just remember Philipians 4:13, “I can do all things through Christ who strengtheneth me.” Love and Prayers to you.

  • cinderkeys May 20, 2011, 1:32 am

    I look forward to discovering what you learn as you learn it. Sorry the process has to be so hard. :/

    On another note, what did you say to that guy in the library?

    • Josh Hanagarne May 20, 2011, 12:07 pm

      LOL. that’s between he and I. He wasn’t happy when he left, but I wasn’t either, so we both lost.

  • Jeanette May 21, 2011, 8:29 pm

    So sorry, Josh! I’m sure you are exhausted in every way. Bummer about the ignorant Neanderthal in the library. I have seen the cyclical nature of tics in my son and I know how heartbreaking it is when they return full force and then some. I’m certain that the efforts you are making are making a difference for you. As you said there are probably just more pieces to the puzzle. Best wishes in the solving.

  • Amy December 6, 2011, 1:04 pm

    Josh, you owe no apologies. Your willingness to share your story has been a tremendous gift to all of us. We all have been positively impacted by your words, whether we have TS, are parents of TS kids (such as myself), know someone with TS, or are simply in love with your honesty and writing style.

    Your blog was simply my only safe haven when my little boy was first diagnosed with TS. There’s medical info everywhere, but precious little on what it means to live with it, raise a family with it, and try to find ways to allow TS to have a positive impact on others.

    I am forever grateful for your willingness to share. And I absolutely love your writing style. I wish everything positive in the world for you, and I eagerly anticipate the release of your book (congratulations, BTW!).

    Thank you thank you thank you…

  • standgale July 3, 2012, 1:56 am

    one month is a massive achievement, all the same. I don’t know where you went from here, cos this is the end of your series, but hopefully you kept looking, because you have already found something and there might be more.

    • Josh Hanagarne July 3, 2012, 7:58 am

      Thanks. I’m still working on it. Some things are going in the book which comes out in the spring, so I’m saving parts. There’s always more to learn.