As it were…

I was 47 years old when I learned I’d had Tourette Syndrome ever since I was about 10 years old.

I’d heard of it of course.  It’s that weird disease that makes you yell swear words at inappropriate times, right? Well, it’s not a disease, and only about 1% of people who display symptoms have the swearing symptom.

How did I find out? I randomly watched a video on YouTube of a comedian who plays off his Tourette’s for his comedy. His name is Samuel J. Comroe, and the longer I watched the more I heard about my own life. Check it out, it’s REALLY funny.

The most common Tourette’s symptoms are tics. It’s like a twitch, but twitches are usually one-offs, single or few instances.  A tic can be something as benign as sniffing a couple times per minute. Or a light cough. My first memory of anything is from when I was about 10 and my mom said one day “What’s with the cough-sniff?” and I said “What are you talking about?”.

She said “Every couple minutes you cough and then sniff”. I said “No I don’t, why would I do that?”. But then I started noticing she was right. There are two kinds of tics in Tourette’s, auditory and muscular. The famous swearing symptom is auditory, but it can be anything.  My first tic combined two auditory tics, and I’ve never had another.

There’s another taxonomy of tics that contains transitory and chronic tics. Mine have been exclusively transitory, though I have one now that I’ve had for years, and I wonder if it will stay. Transitory tics last a few days, weeks, or months, and then fade away. They rarely return, but I’m quite careful not to do them on purpose just to see.

My first really noticeable tic started while I was at camp one summer, so it was a surprise for my family when I came home. You know how you can move your jaw side to side a little bit, and flex the joint, and maybe even pop it like cracking a knuckle?  I started doing that, except also flexing the muscles on my cheek. But only on one side of my face. I sat at dinner the first night home and my dad said “Why are you doing that?!?! You look retarded!”

I need to point our here that my dad was rarely that callous when I was a kid, and I had a good enough relationship with him that I was able to say “I can’t help it, back off!” and he did and I wasn’t scarred by it.

I’d also like to point out here that my dad was a paramedic instructor and my mom was a Registered Nurse, and it never occurred to either one of them in my whole life that I might have an actual neurological disorder to explain this stuff.  My family just said I lived in the Twitchy Zone.  They all came to accept that I had tics.

Over the years I’ve had the ever common shoulder roll a couple times.  We’ve all seen baseball players do it as they come to the mound. I’d just do it every 45 seconds or so for 6 months. (Note, as far as I know, all of my tics have gone to sleep with me at night, I don’t have any tics while sleeping.)  One time after I graduated from college I noticed my forehead muscles ached. Then I realized I had been flexing them every 30 seconds or so for days.  That one lasted just a few weeks. My roommate hated it, he couldn’t understand why  kept doing that when I looked at him.

It’s really hard to cuddle up with my wife and sit still to watch a movie or fireworks or anything. My current tics are small, but she can feel every one of them and it’s really uncomfortable.

My current tics:

• I move my fingers against each other so they rub, kind of like scratching a slight itch. Many people do this, so unless you watch me long term it’s really hard to notice.
• I flex the muscles around my ears, forcing my ears back away from my eyes, which pulls my glasses up. Again, glasses wearers will tell you we all do this, but the movement is SO tiny that people don’t usually notice. I just do it every few minutes.
• My left bicep has had a light tic for a couple years now. It just barely flexes for about a quarter second. Most people don’t notice, but a few people have asked me about it.  I suspect far more notice that say anything. But even that is a small motion, so unless you’re in a conversation with me, or watching closely, you won’t notice.

I’ve always wanted a tic that made my abs flex spontaneously every few seconds, so I could get a free sixpack. Alas.

Tics are often called involuntary, but they’re actually unvoluntary. This means that I can stop a tic any time I want just by thinking about, but the longer I don’t do it, the more mental focus it requires to keep it from happening. After a few minutes, 100% of my focus is on making it not happen, and as soon as I think away, it happens again.

After watching Comroe’s video I just sat in silence for a while, thinking about all the tics over all the years.  I started reading about Tourette’s and found that I fit the symptom profile perfectly for all age groups. Kids are more likely to be vocal.  It’s worse in the teen years (because who doesn’t need to look different as a teen?). It gets less pronounced in the adult years.

I read about other common symptoms, and was astonished to discover I have most of the symptoms of ADHD. Again, all I knew was ADHD was “hyper” and I was never hyper. But boy do I have the actual symptoms. OCD is another common co-symptom, and while mine is pretty specific, I absolutely have it in some places.

There’s isn’t really a treatment. Symptoms are rarely bad enough to change ones capabilities in life. If they make you look or act unusual then you have to get around that, but it’s really not that bad for most people. For a few the tics can be very dramatic, like throwing oneself on the ground, or swinging arms in a wide arc.  Even for those folks the treatment is usually based around hypnosis or something.  Remember the focus thing? That can be exercised and enhanced if you really need to, and it can help a lot of people.

I have been extraordinarily blessed in my life that no-one has ever made me feel bad or teased me about any of this. Kids can be amazingly cruel, and I never got any of that.

It’s really hard to describe how life changing it has been to know what’s been going on all these years.  It’s even weird to say, because my life hasn’t changed. Nothing is any different. But now I know why I was different from the other kids. Why my body does this stuff that I can’t seem to control. There’s a reason, I’m not just randomly out of control of my own body.

I wrote this post so that maybe someone else like me will find it and come to the same understanding. I also hope it’ll help YOU, dear reader, understand what Tourette’s is, and perhaps spread that understanding, so that fewer people make to their fifties before knowing what they’re dealing with.

Here’s some reading material on Tourette Syndrome:

• WebMD
• Wikipedia
• Camp Twitch and Shout