Wednesday, June 11, 2014

CAN'T HOLD IT BACK ANYMORE

Here's something you don't know about me:

I have Tourette's Syndrome.

Tourette's Syndrome is a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics.

If you grew up with me or have ever met me in person, right now you are probably thinking something along the lines of one of these statements:

1.) Good one, Elliah.
2.) I've never seen you do anything that would suggest you have Tourette's Syndrome.
3.) Why didn't you ever tell me?

Well . . .

1.) I'm not joking.
2.) You probably have seen me tic, you just didn't know it.
3.) I didn't tell you because--I didn't know it for certain myself, until last year.

So. As Maria from the abbey once said, "Let's start at the very beginning. A very good place to start."

When I was a toddler, my parents could tell I liked things organized. I used to steal pots and pans from the kitchen cupboards and line them up next to my bed. When my mom wanted to cook something, she'd come looking in my room. They could also tell I was afraid of a lot of things: people/cats/dogs/trick-or-treater's who came to our door. Some of these things are usual toddler behavior and fears, but for me, it was the beginning of my anxiety disorders.

In kindergarten and first grade, I walked up and down the (many) steps leading to my elementary school each morning and afternoon. I'd walk in a specific pattern. If I "messed up" on this pattern, I either went back to the top and started over, or was grumpy for the rest of the day, because life just didn't "feel right".


You see that square building at the top of the hill? Yep, that was my elementary school. I told you there were a LOT of steps. Photo courtesy of Joshua Askeroth.

In 5th grade, things got weird. I'd pull my thumbs down to my wrists over and over until I'd feel a loud crack, and then cry because of the pain. I'd wiggle and scrunch my nose and wonder why it was so itchy? Or why I didn't just use my hand to scratch it? I'd do a strange thing with my neck bones, sort of shifting them around in my throat. I asked my dad about it one day (he's a chiropractor).

Me: Dad, I keep doing this weird popping thing inside my neck.
Dad after examining me: Boy, Elliah, I don't know. Does it hurt?
Me: Yes.
Dad: Well, just try not to do it then.

In high school, things got even weirder. I rolled and widened my eyes, frowned, sucked in exaggerated breaths, tried to shut out the barrage of swear words that played in my head while I was suppose to be thinking about reverent things in church, cleared my throat, re-wrote the same math homework multiple times until it looked "perfect", sat motionless while scary scenes played out in my mind, and randomly flipped people off. At this point in the post, if you went to high school with me, you are probably rolling on the ground laughing, because I am probably one of the last people you'd ever imagine giving the bird to someone. Let me just tell you, it terrified me. Whenever my finger went up, I used my opposite hand to hold my arm down to my side, so no one would see. I also burped--a lot. I didn't know what was going on. I asked my Mom about it one day (Mom's know things about manners).

Me: Mom, I can't stop burping. Burp. Burp. Burp. Burp. See? I don't know what to do.
Mom: You can try to keep your mouth closed while you burp, then it won't be so loud.

In college, a few more things joined my weird list: jerking my arm, twisting my hands, rolling my lips, slamming the side of my ankle onto the floor until it popped, and thrusting my jaw forward until that popped, too. I had a roommate who, whenever she saw me popping any part of my body, would say: Stop that! It isn't good to pop your joints! (Which I already knew, because . . . I'm a chiropractor's daughter.)

So, in short: I've always known I've done weird things. Haha. Silly me. But I never once thought it could be Tourette's Syndrome. To me, TS was crazy people who shouted rude things in public places. I certainly didn't do that. After I was married I saw a few doctors and therapists who diagnosed me with OCD, Generalized Anxiety Disorder, and ADD. I went through some cognitive behavior therapy. Some of it helped, some of it didn't, but at least I was starting to learn about my brain.

Fast forward to three years ago when my oldest child (then age 8) started doing some of the same weird things I did as a kid. How funny, I thought, She's got my quirky personality. But as months went by, she started doing things I never did, like winking, blinking, squinting, sticking out her tongue, making a hmmm sound, tensing her arms and legs, and flicking her fingers. I researched the internet heavily (because what mom doesn't do internet searches on everything their kid does?) and everything pointed to Tourette's Syndrome.

At first, I was horrified. After all, I still had it in my head that the definition of Tourette's Syndrome was crazy people who shouted rude things in public. But the more I learned about it, the more I realized things were going to be okay. And the next thing I knew, there was a light bulb hovering over my head. What if I'm not just weird? What if I have Tourette's Syndrome, too? What if those strange things I do . . . are tics? 

Not long after that, I saw a neurologist who gave me a definitive diagnosis of Tourette's Syndrome (although by this point I already knew I had it.)

You should know, I am not one to blab my personal biz to just anybody, so I didn't plan on writing up a blog post about my diagnosis, but something the neurologist said at the end of my appointment changed my mind.

Doc: If I were you, I wouldn't go around telling everyone that you have Tourette's Syndrome.
Me: Oh? Why not? If that's what it is?
Doc: Because Tourette's has negative connotations attached to it. It's a very misunderstood disorder.

And here's the thing: He's right.

The words Tourette's Syndrome conjure up preconceived notions in people's minds. Even I used to think of negative things when I heard those words, because I didn't understand. But tell me, if I took my doctor's advice to keep quiet, what good would it do? Everyone would keep being ignorant, keep believing the myths, keep thinking that every case of Tourette's Syndrome looks just like it does in the media.

Well, I'm not taking my doctor's advice. I cannot sit back and watch as autism awareness and breast cancer awareness grow each day (which is a wonderful thing, don't get me wrong) while I do nothing to spread a little awareness and understanding about a disorder that very much affects my life, the lives of each of my children, and the lives of countless others in this world.

In a way I feel like Martin Luther King, Jr. I have a dream that one day those with Tourette's Syndrome can sit in auditoriums, churches, book clubs, schools, movie theaters, and restaurants, and not only be able to tic freely without being embarrassed, but those around them will hardly notice or care, because they will be so aware, so understanding about what Tourette's Syndrome really is.

And what is it, really? Here are some quick facts.

*TS is more common than you might think, affecting up to 1-10 in every 1,000 Americans.
*Symptoms can range from mild to severe. I am lucky to be considered a mild/moderate case.
*To be diagnosed with TS, a person must have multiple motor tics and at least one vocal tic for at least one year.
*Only 10% of those with TS have a complex vocal tic called coprolalia (saying swear words out loud). I am lucky to not have this tic, but my heart goes out to those who do.
*The best thing to do when you see someone tic, is ignore it.
*Most people with TS also suffer from co-morbid conditions, such as Obsessive Compulsive Disorder, Generalized Anxiety Disorder, Attention Deficit Disorder/ADHD, Sensory Processing Disorders, and Depression. Unfortunately, I have to deal with all of these.
*A little understanding goes a long way.

9 comments:

  1. My nephew was recently diagnosed with Tourette's Syndrome. This is actually very helpful for me. Thanks for sharing, Elliah!

    ReplyDelete
    Replies
    1. Rebecca, you are welcome! Give your nephew a high-five for me. (Not because I'm glad he has Tourette's Syndrome, but so that he knows he's not alone.)

      Delete
  2. THANK YOU! Best I have read thus far!

    ReplyDelete
    Replies
    1. You are welcome. And thank you for reading.

      Delete
  3. There are many, many children and adults who have this condition, and have not been diagnosed. Thanks for sharing this your story, Elliah, as it takes some of the stigma away. Knowledge is power, and with that comes compassion and understanding. Allowing others a peek into your life is brave and selfless.I am humbled by your words.
    Hugs, Nicole Popel

    ReplyDelete
  4. Well every time I think of Tourette's I think of the lovely Kathryn Hepburn, and now you. Two of the most lovely ladies I know. Good for you for sharing!

    ReplyDelete
  5. This is an EXCELLENT post. Thank you so much for opening up and sharing what is very private for the sake of others like you. My daughter is 13 years old and has TS plus the co-moridities. We share your drive to educate the world. Keep going and so will we! Brava, Elliah

    ReplyDelete
  6. A friend of mine shares you affliction. I think you're right in being open. It's therapeutic and can help others with awareness or sometimes, their own struggles. I have bipolar and have been very upfront with people. I can't tell you how many people have thanked me for helping them understand a suffering loved one. You're awesome!

    ReplyDelete
  7. I didn't know much about TS. My heart goes out to you. Thanks for sharing your story! We do need more awareness of this condition that affects so many people! I've been reading your blog posts and I'm in total awe of you.

    ReplyDelete