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Book Trailer, Tourette’s Update, Miscellaneous Semi-Whines

A concerned local reader recently observed me yapping away on the reference desk and asked how I was doing.

“Like this!” I said, and proceeded to produce a veritable discordant symphony of nonsense for him.  He laughed.  I laughed.  We both knew it wasn’t funny, but whatever.  We laughed and that usually feels good.

It’s been a while since I’ve written about Tourette’s, and sadly, there just hasn’t been much to say besides, “I’m back in the middle of it and it sucks and things have been a bit desperate.”  It’s exhausting.  It hurts sometimes.  And the stronger and bigger I get, the faster my movements are.  There’s a trade off.  Boo hoo.

So here’s a rambling recap from Last Exit to Twitchville.  

A camera crew came to the library recently to film a book trailer.  That was an odd experience.  I’m highly susceptible to open light bulbs right now.  I am compelled to look at them in a very specific way, and then blink in a very specific way, and it’s intrusive as all get out.  But there are lights, and then there are weird umbrella TV lights one foot away from my face. 

Just look at that enthusiastic weenie in the blue shirt.  You’d never guess that he’s squawking his fool head off between takes. The trailer was fun, besides the tics.  I’m excited to show it to you soon.

At work, I’m okay on desk, but in the back room I’m making terrible noises.  I know it’s annoying everyone because it’s annoying me.  Everyone is too nice to say so, bless their hearts.

Staying indoors is becoming increasingly tempting, but I can’t do it.  I always feel like I’m about two missed shifts away from never coming back.  It’s a silly feeling, but it still feels true.  I don’t want to find out.

I’m not sure when my next down spell will be and I try not to think about it.  This isn’t Tourette’s-specific: when something hurts, the best way to go nuts is to start looking ahead to tomorrow, and the next day, and the next.  From Infinite Jest, here’s a character in a misery greater than anything I hope I ever see:

He could just hunker down in the space between each heartbeat and make each heartbeat a wall and live in there. Not let his head look over. What’s unendurable is what his own head could make of it all. What his head could report to him, looking over and ahead and reporting. But he could choose not to listen…everything unendurable was in the head, was the head not Abiding in the Present but hopping the wall and doing a recon and then returning with unendurable news you then somehow believed.

Every moment is endurable.  I like that and I’m glad it’s true.

I’ve gone to a couple of support group meetings recently.  It helps, just not with the symptoms.  It can be a very lonely disorder, and there’s something in everyone ganging up and venting, being lonely together, I suppose.  It breaks my heart to see kids with Tourette’s who just haven’t gotten through enough twitchy days yet to make their peace with it.

Most of the things that used to help me–“used to” meaning two of the last three years–aren’t doing anything. Some are making it worse.

I’m getting the most relief right now from writing, which is useful from a productivity standpoint. Once I finished the book I immediately started the next.  The problem was that I wasn’t sure of what exactly the project would be.

But I type and I type and I forget to blink often enough and my eyes get dry and tired.  But I’ll tell you this, aspiring writers who struggle with output: I’m sitting on top of a mess of about 500 pages that I’ve been pounding away at since early September.  My typing speed has nearly caught up to my IQ at this point.  An online test tells me I’m consistently hitting 101 words per minute.

BOOM.

This pile of writing is not a book, but it’s a book-length mess.  I go back and look at some of it and have no idea where it came from.  Some of it’s good. Some of it’s awful. Lots of it is pretty hilarious, if utterly without context.  Some of it’s just strange. My editor would have an aneurysm if I sent it to her. Anyway, I’m not contractually allowed to for a while.  First things first.

Does any of this matter?  It does not, not as far as decision making goes.

I’ve got work to do, so I’ll do it.  I go to the library.  I write.  I lift.  I try not to be too obnoxious.  I try not to let my temper get short.   I whine to you guys.  I used to say I didn’t want sympathy when I actually did.  Now I say I don’t want sympathy because it doesn’t do any damned good.

“You’re brave,” someone said recently.

Nope.

It isn’t courage–I’m past worrying what people think about it all.  It’s some weird combination of irritation and rage and spite.  I’ve got what I’ve got and so do you and we’re all dealing with things that feel unbearable now and then.  But if they were unbearable, we couldn’t live through them, and if you’re reading this, I hope you’re alive.  But if you have a zombie gravatar please comment so I can see you.

When I talk with David Cain from Rapitude, we have actually been signing off with “Good spite!” instead of “Good night.”  He laughs.  I laugh.  And we both know it’s not that funny.

Despite it all.  Life is good.  I’m happy. I’m glad I have you knuckleheads to pal around with and bounce ideas off of, and I know things will get better.  I’ve seen this pattern before and I’m sure I’ll see it again.

I will give a signed copy of the book to the first person who says, “Josh, you’re so handsome!  You’re far too gorgeous for anyone to live without!”

Comments on this entry are closed.

  • Monica Haney November 1, 2012, 5:23 pm

    (((HUGS)))

    • Josh Hanagarne November 1, 2012, 5:32 pm

      Monica, that’s not going to win you the book!

      • Monica Haney November 1, 2012, 9:14 pm

        Lol, I actualy didn’t see that last part. That’s ok I’m not in it to win a book. Not that I’de ever get a chance to read one with two crazy kids bouncing around my head (dam halloween). But I do believe you are a blessing and a comfort to me, as a mother, I can use your wisdome to give hope to my son.

  • Kirk November 1, 2012, 5:39 pm

    Josh, you’re so handsome!  You’re far too gorgeous for anyone to live without.

    Also, I love that line: Everything is endurable.

    I can relate.

    • Josh Hanagarne November 1, 2012, 5:46 pm

      Okay, we’ve got a winner. Remind me when it’s time. Also, I still want that guest post! You have given me more perspective than anyone I know. People should hear your story.

  • David Cain November 1, 2012, 6:53 pm

    Curses! Bags of hammers!

    I’ve had this “almost around the bend” feeling a lot of my life, and then sometimes it seems like I have finally rounded the bend. But then I quickly notice that I have only rounded a particular kind of bend, and the real bend is ahead. It’s always there, never here.

    Sorry, that got a bit abstract. But that’s the way it is, as much as I wish “The Struggle” could be something physical that I could beat up or dismantle with my hands. The more I think about my troubles the more abstract I realize they are. I think the concrete things that appear to comprise our troubles are really only hinting at some flaw in the way we regard it all. Why must we always have an issue with our issues? Maybe that’s the only issue.

    Have a wonderful spite!

  • Casey November 1, 2012, 7:30 pm

    List:

    1. The Tourette’s stuff is as engaging as anything I read online.
    2. I’m sorry that it is bad now.
    3. Laughing at things that aren’t funny is a topic worth thinking more about, I think that’s going in to the old writer’s journal.

    • Josh Hanagarne November 1, 2012, 8:04 pm

      I’m sure that bitter, bitter laughter has some great adaptive benefits!

  • Jenn Garrison November 1, 2012, 7:33 pm

    Thank you for coming to the support group. Andrew thinks it’s so cool that he knows you in person. Thank you for being a role model to him and letting me see that having Tourette’s is not going to hold him back. I know a lot of the talk at the meeting is about the kids, but I hope that you’ll be able to share more of your experience with us. You give me hope for the future! Thank you!

    • Josh Hanagarne November 1, 2012, 7:51 pm

      I’m thrilled to hear that. You tell him to model all the good stuff I do, and ignore me when I fuss.

  • Dave Currie November 2, 2012, 1:54 am

    Hi josh. I read your blog post and thought “damn, josh sounds like he’s having a bit of a crappy time of it just now, I should reply and say something meaningful and helpful and make him feel less crappy”. Then it dawned on me that I have no sodding clue how you feel or how you cope, and that there seems little likelihood of me writing anything profound, or even particularly meaningful. However, I remain continually impressed by your writing, your determination, your desire to help others, and your ability to lift, and throw, heavy objects, and if you can take anything positive from that or even just that there are people out there (here) thinking of you, then please, please do. Dave

    • Josh Hanagarne November 2, 2012, 9:09 am

      Thanks Dave. I already feel better this morning. Sleep always helps. Things will proceed as usual, because they have to. What’s the alternative?

      • Dave Currie November 2, 2012, 5:30 pm

        … As I go to bed I look ahead to tomorrow and realise that the day just gone was the day that yesterday I thought I’d never get through …

  • Kris Wragg November 2, 2012, 2:38 am

    Sucks that you’re having a hard time with the tourettes again Josh, hopefully you will find more ways to keep it at bay!

    When is the book due? I saw the book cover you posted a while back, got me excited to get another Josh Hanagarne book to go in my collection with my signed copy of your first book 🙂

    PS. You need to post more on StrengthRules.com its getting a bit stale!

    • Josh Hanagarne November 2, 2012, 9:10 am

      Kris, it’ll be out on May 2. Thanks for the comment. And you’re right about the other site. It’s a shabby state of affairs.

  • Gypsy November 2, 2012, 6:05 am

    I wanted to say something positive and cheering. Something about how my grandad spent 70 odd years living with Tourette’s and died a relatively happy guy- but you know I have no idea how he felt about it. Because at 23 I was too silly to ask. And that’s one of the reasons I like to read your blog- it gives me a little window to his soul. And then while I was trying to think of what to write I flicked over to some thing else and saw this: BACK IN THE DAY, THE CURE FOR INSANITY WAS TO HAVE A HOLE DRILLED IN ONE’S SKULL TO LET ALL THE CRAZY OUT. SOME DAYS I LAUGH AT THIS CHILDISH LOGIC. OTHER DAYS I’M ALL, “HOW DO I GET IN ON THIS? I’M WILLING TO SIGN A WAIVER.”
    And it made me laugh so I hoped it might you too!
    Much love to you Josh.

    • Josh Hanagarne November 2, 2012, 9:12 am

      Thanks. I’m off to get my drill. Tourette’s is no worse than many disorders or situations, and it’s way better than many I could choose. Kirk who commented earlier has been battling cancer, loudly and defiantly, fighting for his life. I’m not in any real danger. It’s all perspective.

      That said, everyone’s got something that feels unbearable. There’s no point in sniffing and saying “You don’t know what hard is!”

    • Monica Haney November 2, 2012, 9:38 am

      LOL, I have had brain surgery myself, I can garentee you this didn’t cure my CRAZY, they’de have to take my whole brain out for that. 🙂

  • Ara Bedrossian November 2, 2012, 6:11 am

    I can imagine that your situation, especially now, is frustrating. I think about all the things we can’t control, and we don’t, and compared to this, they seem embarrassing, while your situation is..well, it just is.
    Soldier on.

  • Amy November 2, 2012, 6:35 am

    Josh, I just want you to know you have made a considerable impact on my life. I can’t tell you how much your willingness to share your story, thoughts, humor, and perspective means to me. Peace and love to you!

  • Heather November 2, 2012, 7:59 am

    Bitter laughter is the best laughter of ALL! Laughing at stuff that isn’t funny is often the best way to deal with the not-funny-at-all. Roll with it, see what happens! I LOVE DARK HUMOR!

  • Josh Hanagarne November 2, 2012, 9:13 am

    Whether it is or it isn’t, I’m a fan.

  • Daisy November 2, 2012, 9:41 am

    My hearing impairment gets in my way sometimes, but at age 51, I’ve learned to work around it. I still get embarrassed when I do something ridiculous because I didn’t hear correctly.

  • cinderkeys November 5, 2012, 12:05 am

    I hate it when people say, “You’re so brave/strong/saintly/whatever for dealing with [situation or condition out of your control].” As if hardship is the Hunger Games, and you can volunteer to take somebody else’s place. “No no, give the cancer to me instead of my sister.”

    That’s not to say that individuals have no say in how well they cope with their personal burdens. Not caring anymore what people think of you is a variety of courage. But I suspect that most people who say “brave” under these circumstances are on some level trying to make themselves feel better. If only the brave face hardships, then I, a coward, will continue to lead a comfortable life.

  • Kris Wragg November 5, 2012, 6:28 am

    Some tips for describing the characters in your next book?

    http://www.qwantz.com/index.php?comic=2313

  • Annabel Candy, Get In the Hot Spot November 5, 2012, 7:52 pm

    You tease:) I want to see that trailer NOW!!

    • Josh Hanagarne November 6, 2012, 7:57 am

      I’ll take your demands to the publisher.

  • Kris Wragg November 6, 2012, 7:59 am

    What if all your characters were super hot AND brianiacs?

    http://www.qwantz.com/index.php?comic=2314

  • Grace December 20, 2012, 1:32 am

    Josh, I’m so sorry (& frustrated!) to hear that your tics have come back. I spoke to you by email a while back to ask you for tips & encouragement for my now 20yr old son whose tics started around age 4 & kept getting incrementally worse over time rather than following the “normal” Tourette’s pattern that seems to decrease after age 13 or so.

    I wanted to let you know that we have since learned that he has been harboring chronic infections from borrelia, babesia & bartonella – possibly other things as well because the borrelia effectively turns off parts of the immune system so that the body is unable to fight off other things like strep & mycoplasma pneumoniae, etc. Turns out that bartonella in particular is rather infamous for causing neurological problems, including such things as Tourettes, when it gets past the blood-brain barrier into the central nervous system. Now we know why his tics kept getting worse every time he got immunized or sick and didn’t improve afterward (we joked – in that bitter laughter sort of way – that instead of waxing and waning his tics just waxed and waxed).

    We have been seeing a specialist for treatment. It is not easy as this is sort of a “new frontier” (nor cheap since insurance doesn’t cover frontier treatment!). We may never be able to get him fully well, but so far it has brought him out of his scary downward spiral that was triggered when his younger brother developed symptoms of walking pneumonia and has also decreased his tics by ~10% – those are worth a lot right there!

    So we have hope that he might be able to at least start living a relatively normal life even if we never succeed in getting him totally tic-free.

    I have also read of people who have developed a chronic infection from strep developing Tourette’s, and I am thinking that perhaps those people who develop Tourette’s that gets worse as they get older instead of improving may be fighting such chronic infections in their CNS. I hope & pray that we will have the answers some time very soon so that all who are struggling with this challenging condition will at last be freed from it!

    And thank you for all that you have shared as it has been such a source of hope & encouragement for those still trying to figure out how to accept their condition without surrendering to it!