New Series: How To Have Tourette’s

I have mentioned Tourette’s Syndrome often enough that several readers have asked me to elaborate a bit on this absurd disorder of mine. Writing about something painful can be dangerous:

I either wind up sounding pitiful or self-congratulatory. This series will be my attempt at discovering whether I’ve put enough distance between myself and my condition to write about it in a way that will edify readers, not trigger their gag reflexes and BS meters. Whenever possible, I will discuss my experiences with TS in terms that will be applicable to anyone interested in strength, knowledge, and living a rewarding life. I have no lessons to teach–that would imply that I know something, and that ain’t happening–but take what you will from the stories.

Tourette’s , named after Gille De La Tourette is strange and interesting. If I hint at anything you would like to know more about, please ask. People often feel intrusive if they ask me questions. I like to answer them. The more awareness there is, the easier it will be for the next person with TS that you meet.

Finally, I suggest you listen to the audio even if you read the piece first. TS stories are way better with the sound and I will be able to express things that don’t translate well in print, like all these weird noises I make.

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The first time I tried to write about Tourette’s Syndrome it was going to be a novel. I was 23, miserable, pitiful, and in love with my own cleverness. I churned out a couple hundred wretched pages with enough angst in them to fill a billion debut novels. Nothing is more dangerous to the writer than falling in love with the idea of yourself as being “tortured.”

I aborted that project because I lacked the writing skills and the perspective. I was still in the thick of my symptoms and at rock bottom. It was too close. Too painful. My attempts at honesty were lies and my attempts at cleverness were self-serving. Come to think of it, the best book about Tourette’s would be like the children’s books that have the buttons in them–when you see the appropriate picture, you could push a button to hear the appropriate tic.

It is time to do better. It is a story worth telling, but only if it can be told honestly. Unfortunately, I believe that no story can be told with 100% accuracy. Especially stories about great pain.

Memories and Pain

There are two reasons for this. The first is that stories change and memories change. We change them. Without going into it here, I would suggest you read my article “Do We Remember The Event Or The Story?” Here’s the gist: we change stories based on our circumstances. Embellishments or omissions–change is change. Whether we exaggerate to impress or cut things out to hide our weaknesses, we change things. Please read the article if you haven’t before.

The second reason: it is hard to talk about pain and suffering accurately. I will be talking about the greatest pain, mental and physical, that I’ve ever experienced. But I’m not feeling it anymore. All I can say is that I know it hurt and I know how badly it sucked. But ten years after you break your leg, you can’t make yourself feel the pain of that broken leg because your leg isn’t broken anymore.

So when I say things hurt, I mean it. They may not have hurt as badly as I think they did–if I had the same symptoms today they might not seem as horrific as when they were at their worst.

That’s the only disclaimer I’ll make. I’m going to tell you things the way I remember them, but my memories may be fuzzier than I think.

The beginning

When I was six years old, my parents noticed me touching my upper lip to my nose while watching cartoons. Over and over, up and down. My mother tells me: “We weren’t sure that you knew you were doing it.”

Over and over, up and down, sometimes interspersed with rapid blinking.

Was it cause for concern? Hard to say, perhaps, but who are any of us to tell parents when they should worry about their children and when they should let things play out?

A word about specialists

My parents eventually grew concerned enough that they took me to a specialist. “Specialist” as it pertains to Tourette’s is a word I’ve hated for the last ten years. I’m trying to do better. It’s not their fault, but the truth is, people who specialize in Tourette’s know a lot about it, but that doesn’t mean they can treat it.

One of the most maddening challenges of the disorder: there are no hard rules for treatments. Symptoms vary wildly, as do the ages at which Tourette’s might originally manifest. I have a niece and nephew who each have it, and they do all sorts of loony stuff that I’ve never experienced, and vice versa.

Specialists don’t like to admit they are guessing. After all, they know more than the laymen, that’s why we turn to them: because someone has to have the answers.

My specialist diagnosed me quickly and accurately, which must have provided my parents with equal parts relief and unease. Relief because it wasn’t more serious. Unease because there were so many unknowns, as is still the case today, 24 years later.

A brief description of Tourette’s Syndrome

Here’s what it boils down to at its most basic level: too much of this or that in the Tourettic’s brain causes a person to either vocalize or move their body involuntarily.

It sounds weird. It is weird. This is the best way I know to describe it:

Think about the worst you have ever had to sneeze. I mean when it’s right there on the brink and you want relief so bad that you’re willing to close your eyes and let it go even if you’re driving on an icy road in the snow. Now think about having that feeling all the time–you could stop it, but choking off a sneeze never feels satisfying, does it?

The “best” part about Tourette’s is, when you let that sneeze go, again and again and again…you don’t know how it’s going to come out. You feel the relief but then you start over immediately. Tic tic tic tic tic. The clock never stops and the battery never winds down.

Tic tic tic tic tic…

Maybe it just makes you curl your lip and touch your nose. Maybe things get a little more exciting. Maybe, in cases like mine, things get much, much, much more exciting. But I don’t want to get ahead of myself.

What Tourette’s is not

Hollywood has not done any favors for people suffering from Tourette’s, or for those seeking to understand it. Watching Deuce Bigalow does not grant one an understanding of the condition, yet what are the alternatives? Nothing, because too often we only love the sensational, crass, and lowest common denominator.

Novels aren’t much more help. Some are a lot of fun but use Tourette’s as the gimmick, such as the awesome Motherless Brooklyn by Jonathan Lethem–but that book is going to teach you more about how a great mystery is supposed to work than about Tourette’s. Some are dismal, superficial failures that use Tourette’s as a gimmick while pretending to be profound and daring, like Icy Sparks. Yep–it’s that one Oprah recommended and I don’t care. She shot an airball. Nothing is less moving than artifice.

Even though I’ve said that what comprises one case of Tourette’s may not relate to the next, please forget what you know or think you know about the condition, whether you’ve learned it from Deuce Bigalow, Oprah, South Park, or even myself. It’s more fun and enlightening that way and you may get a kick out of getting caught off guard as often as you’re going to.

This ends part 1. I’m going to write one entry a week until there are no tales to tell you. This means that we should all settle in for a long time, but it’s going to be great. As horrific as some of this stuff will be…wow it makes a good story.

And once more, if you have questions, please ask me. Either leave a comment for me after the post or send me an email. I will respond to each and every one because this is worth doing right.

Most importantly, if you know someone with Tourette’s, send this to them. It will help them know they are not alone. If I had found someone to talk to earlier, things might have turned out different. Not better, but possibly via a less twisted and anguished path.

In part two we’re going to be ramping up the weirdness a bit, so if you haven’t subscribed to the RSS feed yet, please do it now to make sure you get it just in case you can’t make it back to the blog.

As always, thank you all.

Josh

Update: If you’re just getting here and you or someone you know has Tourette’s, I would check out this post on tourettes medication and also subscribe to the Tourette’s newsletter. It’s got a 20 minute video in it that I think will be useful to you.

Tagged as: How To Have Tourette's, stories