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How To Have Tourette’s – Signals, Pain, and The Only Questions Worth Asking

If you’re new to the site or haven’t heard me talk about Tourette’s, the How To Have Tourette’s series is a good place to start. thanks!

Hey gang,

Since it’s been so long since I’ve written regularly here, and since so many of you have asked about my health, I wanted to give you an update. I’m doing fine–great in many ways–but Tourette’s is one of the pieces of my life that continues to deteriorate.

In a nutshell, everything hurts, all the time. I’m almost 39 and all of the little (and big) things are taking an accumulative toll that I thought I’d be able to stay ahead of. But physical pain is much easier to deal with than emotional garbage and I’m doing fine on the inside.

I’m a little worn out and pretty low energy, but the things that have always sustained me continue to do so. Reading, writing, thinking, friends, family, and love. I’m getting married in October and couldn’t be happier about it. I have book projects coming that I hope to be able to tell you about soon. I have a wonderful son and a family I love dearly. 

But one of the most obnoxious things about pain is that you can know all this stuff, know how good so many things are, and the great things still doesn’t feel like they matter as much as you know it does. Pain collapses the world. It’s a type of living in the moment that is not at all Zen.

Now, if you have Tourette’s, before you start nodding and thinking Oh yes, we have it so hard, and no one will ever understand us, boo hoo, I’d just say that I don’t feel sorry for myself.  I’ve been there, though. I spent way too much of the first half of my life crying about Tourette’s. It never helped or made me feel better or changed anything.

I’d rather have Tourette’s than cancer. I’d rather have Tourette’s than be in a wheelchair. I wouldn’t trade my hearing or sight for fewer tics. And it’s possible that many of those folks wouldn’t trade with me. There’s never any reason not to be humble when you realize there’s always someone suffering worse and handling it better.

You can’t show me someone who doesn’t deal with something awful, inside or out, seen or not. We all have something unfair in our lives but no one promised any of us fairness. Letting go of the idea that it was supposed to be another way is a big part of acceptance. It wasn’t another way. It’s however it is and now you and I and everyone else still have to live.

So here’s a clear-eyed update about what’s annoying me the most, just sticking to the facts:

As far as the symptoms, I am currently:

  • Smashing my teeth together to an insane degree. We were eating nachos the other night and I spit out a piece of one of my front teeth. Did it again last week at work. My incandescent smile grows more like Stonehenge every day
  • Very strange stomping tic where I’m slamming my heels into the ground. This has made it hard to stand for long periods, or even to walk around at work. Feels like needles are in my heels.
  • Lots of spitting, to the point where my damn chin is all chapped from wiping it off
  • Elbows hurt from weird arm cranking tics. I haven’t been able to find an exercise that doesn’t hurt in over five weeks, which is a drag
  • The fatigue at this point is hard to describe. It’s really surprised me. No amount of calories or sleep seems to cut into it much right now.

There’s more, but there always is.

That’s one of the biggest challenges with Tourette’s. Pain is a signal that says “stop doing whatever it is that hurts.” With Tourette’s, it’s not really an option. It’s like spraining your ankle and then, instead of bandaging it, icing it, and elevating it, you’re forced onto a pogo stick for 30 minutes of each hour.

But, like everyone else, when it hurts, there are only a couple of questions worth asking. (And they’re not “Why is this happening to me?” or “How come everyone but me gets to have a perfect, pain-free life?”)

Instead, when it hurts, I try, whenever possible, to look at myself and say:

“So what?”

and

“Now what?”

That’s it. Any adjustments we can make to our jobs, lives, attitudes, medical care, goals, etc, are just answers to those questions. There’s nothing else besides dwelling and moping and venting while the clock tics, the sun sets, and we now have one fewer day left to live.

So I have to look at the many, many days left in my life, and the millions of tics that will fill them, and to figure out what the best way to keep moving forward is.

It’s always the same: Learn, laugh, love, help more people than I hurt, and try to create a life filled with things that are meaningful to me.

I hope you’re doing the same. Thanks to all of you who have checked in on me. I’m tired and grouchier than I’ve ever been, but I’m still making progress in all the areas that matter most to me. Sometimes that’s going to be the best we can do.

 

{ 11 comments… add one }
  • Robin August 16, 2016, 5:19 pm

    What a remarkably practical attitude you have, I so admire you. Living daily with a chronic disease is no fun, but your determination to make the best of it is impressive. Thanks for sharing your symptoms; of course most people know about the tics and speech issues, but I didn’t realize how some of the movements contribute to pain and fatigue. Keep calm and carry on Josh!

    • Josh Hanagarne August 17, 2016, 8:52 am

      Robin, some of the pain is simply overuse. But I also have some huge physical tics–scratching, hitting myself, etc–that are pain every time. I don’t deal with as much damage as I do with a million lingering, nagging aches and pains, but it definitely adds up. I realized that one of the things that makes me feel older is that I’m ALWAYS aware of my body now. It used to just be something that carried my brain around:)

  • Joe August 17, 2016, 4:56 am

    Hey man, I’ve been reading your blog for a while then heard this podcast and thought I’d ask your opinion on it.

    It mentions helping improve Tourettes with orthodontics – is it bunk?

    http://smartdrugsmarts.com/episode-112-orthodontics-neurology/

    Thanks!

    • Josh Hanagarne August 17, 2016, 8:50 am

      Hi Joe, I don’t know when I’ll have time to listen, but I can see situations where orthodontics could help. The problem is in how we define help. For me, anything that gives me any relief whatsoever helps, because it’s just less overall stress. Stress–or pain, or anything that’s not good–tends to make my symptoms worse. But there are lots of moving parts. Less distress can equal a better day overall for me, so if orthodontics could give me some jaw or tooth relief, I can see it helping overall. But it’s just an improvement of the overall situation. Any silver bullet-type cure for Tourette’s is probably going to be closer to what you’re calling bunk, although everything seems to be THE ANSWER for someone. We just can’t generalize with outliers.

  • Jan August 17, 2016, 5:28 am

    I am in awe of your inspirational attitude…and your writing. Thank you for sharing your story and finding the strength to write about it.

    • Josh Hanagarne August 17, 2016, 8:51 am

      Thanks Jan! I’m not always the best example of the things I say, but I do believe that they’re true. Always trying to do a little better. Glad you’re here.

  • Jack M August 17, 2016, 5:33 am

    Josh, I hope that things get better for you and that you continue to deal with your condition with your usual strength and positive outlook. Sending you healing thoughts.

  • Michael LaRocca August 17, 2016, 3:15 pm

    I recently read Suicide Notes by Michael Thomas Ford. At one point a group was asked if they could change any one thing about themselves, what would it be. Later we as the readers realize that three characters added something and only one gave something up. My answer isn’t important, but it was additive. I just thought it was an interesting question because answering it can shift your perspective. And, as you probably guessed, nobody in the book had Tourette’s. The only book I recall reading with a character who had Tourette’s was written by a guy who works in a library. I’m glad he wrote it.

  • Beth Gainer August 18, 2016, 2:37 pm

    Hi Josh,

    Thank you for the update. I’m sorry you are dealing with all this pain.

    Your post is so insightful — I think somewhere in our collective childhood we grew up believing that the good get rewarded and the bad suffer. As we grow up, we realize that this is an illusion; good things and bad things happen to each of us in our lifetime, and we need to savor our lives.

    As you know, I have had cancer and, as you might not know, PTSD as a result of the cancer experience. While I do feel sorry for myself at times, I lead a mostly contented life. It’s a cliche, but happiness is a choice. My goal is to live a life worth living. And I’m doing just that, as are you.

    Thank you for the inspirational post.

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