Tourette’s: An anniversary commemoration

Tourette’s Syndrome is a fascinating disorder. I realized my first anniversary of having the full-blown disorder was this month, and it is worth commemorating in some way. So I thought I’d try (again, and likely fail, again) to explain what my experience with TS is like (fortunately, I’ve taken as motto, “Try again. Fail again. Fail better.”). People seem endlessly curious about it, and this seems natural because it just looks and is so odd. So here’s another shot:

At any given point I will have a particular repertoire of tics. These are the ones that will show up the most often during that particular period, though there are occasions where you’ll see the entire history of my TS in one five-minute interlude. These are relatively rare, and are usually followed by one of the old tics entering the newer repertoire.

My current collection includes five base tics, two “vocal” and three “motor”. The two vocal are clearing my throat and sharply intaking breath such that the tongue to roof of mouth suction creates the “Hut” sound. (The “hutting” is a crowd-favorite, as it supplied endless fodder for lame one-liners like, “What’d you see in the forest?” and “What dwelling is larger than a tent but smaller than a cabin?”). The current motor tics are touching my shoulders, tapping a surface in patterns of three, and snapping or stretching my fingers in patterns of three. Old tics which pop up again for a brief visit on occasion are sniffing, adjusting my jaw, blinking patterns, and tapping other people’s knees/notebooks/shoulders in patterns of three.

I go through frequency/intensity periods with my tics, and the patterns do seem to be weather-connected, with colder days seeing a higher frequency. On an average day I’ll experience roughly 100 tics an hour, with fewer during the mid-morning to mid-evening and up to ten a minute within the first few hours after waking and before sleeping. I also go through periods where I’ll tic twenty times a minute and periods where I might not tic twenty times all day. I’m still attempting to trace back and determine what factors impact the frequency.

Tics are divided into three parts: the urge, the action, and the repercussion. Sometimes the urge and action are entirely intertwined, so that I won’t know I needed to tic until the tic is already in progress. Most of the time, however, there is the knowledge that I have to perform a particular tic, with a conscious pause between when the signal to tic arrives and the tic is physically carried out. If the interchange is not instantaneous, there is the repercussion. This is a feeling of tension/pressure that builds and builds until it is the only thing I can think about. Sometimes the latency period between the signal and full pressure is a matter of seconds, and sometimes it can be as long as seventy minutes (which all of my professors of 75 minute classes are quite familiar with at this point). If I let the need build to maximum pressure, the release is tremendous with an incredible slew of tics occuring one after another for what feels like an eternity but is typically no longer than thirty seconds.

Tics can be aggravating, to both the performer and the observer. They can be frustrating, annoying, and limiting. But they can also be amusing and are an excellent diversion technique. Having Tourette’s, I get to see the worst in people- their impatience, their tempers, their ignorance, and their fear. But I also get to witness some of the best, when people laugh with instead of at, when I get shown compassion that isn’t tinged with pity, and when others take the opportunity to educate rather than join in taunting an easy target. Having Tourette’s isn’t all sunshine and rainbows, but it certainly isn’t a thunderstorm either. If I learn as much from year two of living with the disorder as I have from year one, I should be a sage by thirty.