Tourette Syndrome (TS or Tourettes) is a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics.
God! This topic again? Can you tolerate another blog post about mental health? About Tourette Syndrome? About oddity? About me?
It’s TS Awareness Month, therefore I feel the need to hammer you (again) with messages about Tourettes. It’s on my mind; even if this wasn’t THE MONTH, it still would be. I’m messing with my meds. How many times have I written that? Every six months or so, I make a change to the cocktail of pills I take to live a comfortable life.
Calling my medications “my meds” makes me feel hard-core. Serious. Mentally ill. I take my meds to even out my moods. They’re integral to my happiness. Some of you, I know, think taking pills is cheating. Not playing the hand I was dealt. Turning me into someone else.
Well, maybe they are.
I take a medication called Risperidone. Google it: you’ll find that it’s an anti-psychotic given to schizophrenics. No, I’m not psychotic and I’m not schizophrenic. As it happens, there are no drugs made specifically for Tourettes. All possible TS prescriptions are made for other disorders, but over time, someone realized they work on Tourettes, too.
I’m on a seesaw right now. A higher dose leaves me feeling mildly depressed, unmotivated, a little sad. Not paralyzed, but unnecessarily bummed out. I Googled this too. Apparently, depression on Risperidone only happens to people with Tourettes—it doesn’t seem to bother the schizophrenics. And a lower dose doesn’t fully control my tics, my involuntary movements and sounds.
In honor of Tourette Syndrome Awareness Month, I’ve lowered my dose. It helps people be aware that I have Tourettes. Last week at work, I was coughing. This is something that happens when I feel some stress. And work is a bit stressful right now. A cough or two, then nothing for fifteen seconds… then another three… and so on. I guess this was going on for quite a while. My co-worker Jess asked if I was OK. “You’ve been coughing a lot over the past week or so.”
Have I? I didn’t notice. “I have a neurological condition that makes me cough,” I said.
Jess stared at me for five seconds. “I can’t tell if your joking.” So now I’m out. My part of Tourette Syndrome Awareness Month: I just made them aware at work.
Tics are weird. Here’s how they work.
Last week, I headed out for my morning walk. This year, walking has become an important part of my day. It’s when I truly let my mind wander. Sometimes I sing a song, sometimes I solve a problem, sometimes I write a story in my head. Lately, I’ve been chewing gum while I walk. If I don’t, I scrape my front teeth together the whole time. I don’t want to, I just do it. On this particular morning I forgot my gum. I began to challenge myself. How far could I walk without scraping my teeth? Pretty far. As long as I concentrate, I can make myself not scrape my teeth.
After a few minutes, I realized that instead of scraping my teeth, I was flipping my tongue over. Twisting it as far as I could. Straining the muscle in the back of my mouth where my tongue connects to the side. This feels really good. So good, now I have to do it. In fact, for the past five minutes, since I’ve been thinking about it, I’ve been tongue-twisting non-stop.
Susan wonders if I can just accept the tics. The depression impacts my life. It hurts my relationships, my performance at work, the mood of my family. But the tics hurt no one. The only person bothered by them is me. If I can just come to peace with them, then everyone’s happy.
My recent trade, depression for tics, was something I considered for a long time. Eventually, I could no longer figure out why I was resisting the switch. Depression, even mild depression, sucks.
As a person with active Tourettes tics, I feel odd–there’s no question about it. At times it drives me nuts. Having Tourettes is like having poison ivy, and trying not to scratch. The tics, regardless of whether I’m conscious of them, are constantly with me. At times, like with Jess, they catch someone else’s attention, and I need to explain what’s going on.
I’ve been an avid educator for the past few weeks: Blogging, Facebooking, Tweeting informative messages about Tourettes, I’m truly embracing TS Awareness Month this year. And with less Risperidone in my system, it’s time I start embracing Tourettes as well.