Topography – motor tics

What it looks like, I can tell you. What it feels like – this is where I’ve always been a little stumped about my disability.

When I was a little girl, my neurologist assigned me homework. My parents bought me a golf counter that I wore on a red ribbon around my neck. I was supposed to click it every time I had a tic.

Here’s my ticker, 20 years later and minus a couple of knobs.

I experienced a huge amount of anxiety, fear, and shame about my ticker, because of a unique attribute: 90% of the time, I don’t know when I am ticking. (Unique as far as I can tell, at least. I read a lot about TS and most people seems to experience regular premonitory urges and be aware of what they’re doing.)

My main motor tic can look like a variety of arm movements:
–In my “about” page you’ll find a photo of my most fundamental involuntary movement – my arms held in front of me, rotating wildly at the wrists, fingers flying all over the place, with my tongue tucked in front of my lower teeth and my eyes glazed over. Nowadays, as far as I can tell, I only do this when I am alone and feel fairly safe.
-A few minutes ago, I caught myself shaking my arm from the elbow and snapping my wrist very violently – ouch! I can have bigger and varied arm movements like this when I am agitated, cranky, stressed, worried, etc.
-In public, I interlock my fingers with my hands in my lap and shake shake shake shake shake those fingers. Even doing it intentionally for the purpose of writing about it feels soooo good.

I also bounce my legs pretty constantly and uncontrollably. And once in a while I just kinda rock back and forth side-to-side, because, gosh, does it feel amazing.

So how does it feel to do my motor tics? When I am aware of my tics, usually those smaller ones, it feels like – shoot, it feels like taking off an uncomfortable item of clothing that you’ve had on way too long – absolute, immediate relief.

And the tics are, amirite? (Err, triple-checking my spelling of “tic” there, that could be awkward.)

The majority of the time when I am having a large motor tic I am completely out of my body. I do not know that I am doing it, unless something happens to “snap me out of it” abruptly (with my wrist-snapping earlier, it was physical pain that alerted me to what I was doing). I don’t know that I have conscious thoughts at all when I am engaged in a tic that occupies that much of my body. I’m always very startled when I notice what I’m doing.

Keep in mind that this is normal to me; I don’t know any brain other than my own.

All that to say, with my ticker, I’d just click it a bunch and tell my parents the made-up number every night. As a professional to whom data is very important, I look back on that and grimace; but what else did I know? My doctor wanted numbers, so I had to find some way to provide them. I was 7 or 8. My parents sure weren’t thrilled when I admitted this a few years back. Oops.

Tics & Tricks

My Tourette’s can be classified as mild.  I have, for the most part, trained myself not to do anything “weird” in front of other people.  One tic that gets by, however, is bouncing my legs.  It’s not that abnormal.  Lots of people fidget when they’re just sitting around…right?

When I was a teenager, my dad would gently nudge me during church to quell my Thumper-like tendencies.  These days, I don’t spend that much time in formal…sitting…situations?  Is that a thing?  But take this morning at a fancy district breakfast.  I became a little antsy as the time came for my principal to introduce me to the group.  In between speakers she playfully chided, “now stop that!” and I realized my legs were bouncing out of control. I spent the next two teacher introductions very consciously willing my legs to be still while pressing my hands firmly into my lap.

Another time this tic was noticed was on a first date.  I muttered, “oh, I’m just a little fidgety.”  My companion replied, “yeah, I fidget a lot, too – although I usually use my hands on a date.”

And he winked.

Noooo!

Coming out

I have a lot of attributes.

I have an unhealthy love of puns. I have a love/hate relationship with my naturally curly hair. I have the appetite of a teenage boy. I have the entirety of Wayne’s World memorized. I have ridiculously high arches in my feet. I have an impeccable memory for numbers and dates. I have mild Tourette Syndrome.

Growing up I never thought of my identity as separate from my disability. TS was just another interesting character trait. As a child, I had a somewhat misguided perception of the disorder, and I was actually pretty proud of the fact that I had TS and was nonetheless a smart cookie. I didn’t mind telling people about it. I’ve never been good at keeping my own secrets. What’s more, especially given the non-disruptive nature of my tics, I thought it was fascinating, and I thought other people would, too.

Fast forward to college. You know, the freshman seminar class that’s all about feelings and bonding and teaching you how to write? An early icebreaker was Two Truths and a Lie – simple enough premise, share three facts about yourself, one made up, and everyone else guesses what’s true. I dropped my disclosure bomb as one of my truths. I expected the reaction would be “oh how interesting.” Instead there was uncomfortable silence.

That’s when I learned to be embarrassed about my disability.

Up to this point, a few close friends and family members know about it, and they all know I don’t like to talk about it. I’ve experienced a couple torturous betrayals of this zinger of a secret. I’ve told a couple of my bosses, nearly bursting into tears when disclosing the awful, gnawing truth to a friend when she became my supervisor. I lied to a student who asked me why my legs were bouncing.

But I’m sick of the shame. I want my whole identity back.

Until next time,
Tracy