This blog entry is written by Steve Colle, a volunteer with the TSFC Calgary Resource Unit and coordinator of the 2014 Calgary Trek. This blog entry originally appeared on an online forum about TS. You can join the official TSFC Forum by clicking here.
Something that I don’t often read about or hear people talking about regarding Tourette is the fun you can have with it with the right attitude. Believe me, I have my “down” days where I just want it to stop because it either hurts, exhausts me, or just makes me stand out like a sore thumb, but more often than not, I try to joke around about it or make light of it, which in turn creates a level of comfort with those around you, whether family, friends, co-workers, or even total strangers. Here are just a couple of instances where I’ve looked at the bright side:
- Shortly after being diagnosed 5 years ago, I was picking my wife up at work and heading home when I tried to say the words “I’m hungry.” That, however, is not what came out. One of my symptoms is getting stuck on a word, syllable, or sound (palilalia, not echolalia) and repeating it over and over again until I basically lose my breathe and have to stop, which will sometimes end it but not always. Anyways, I got stuck on part of a word and what came out was “I’m hung-hung-hung-hung-hung…” She couldn’t stop laughing and I had to follow up with a corny remark which wouldn’t be appropriate to repeat.
- My kids were all together at the dinner table with my wife and I one evening just talking and I got stuck on the word “or” and couldn’t stop, so I started to act like a seal with my hands clapping in front of me. They got a kick out of it.
- One of the tics I get is the urge to bend forward at the waist, which is an extension of tics that I get in my neck which forces my head forward in a “yes” motion over and over again. The same thing happens at my waist, over and over, and I’ve joked that I look like I’m bowing and follow up with “Pleased to meet you, pleased to meet you…” which is deliberate, not a vocal tic.
- I literally spent more than two full days non-stop repeating “Okay, okay, okay…” Needless to say, my wife took full advantage of that!
- I’m at work in the lunchroom with two of my bosses and a co-worker when my right arm starts shooting backwards like I’m trying to elbow someone behind me, as usual, over and over again. I shout out, “Anybody got a lawnmower I can start?” Laughter all around.
- I was walking for more than two months like I had MS, where my lower back and upper leg would cause both of my legs to shoot forwards (alternating) into giant steps like in the Mother May I game. However, this one day, I found that even though I wasn’t able to walk normally, I could (God knows why) jog! I’m at work in a large retail furniture store as a manager and had to show the store manager something in one of the departments, so I explained that I could run and I took off like a bolt. Next thing I know, he’s running right alongside me! Now that’s support.
- And finally, a story of the innocence of childhood: I was growling pretty loud with only my 2-year-old son and myself in the house. He turns to me and asks “Daddy, are you a lion?”
I too often get, because my Tourette is sometimes debilitating, a “poor you” or “I don’t know what I’d do…” or “I could never live with Tourette” or some such remark, even from people who I’d thought had adjusted (not accepted) to my syndrome a long time ago. Those are the people I want to convince that, no matter how bad it gets or may seem, I’m fine, I’m healthy, and I know it will pass, even for a short reprieve before it starts back up. The more I can accept it as part of me, the more other people will learn to accept it as well.
Do any of you have similar stories or instances where you’ve been able to laugh about your Tourette?
My son is 12 and we received the diagnosis today… the sense of humor really helps. He uses the code name “Clock” around us when his tics are or of control, “just call me clock today” but it’s hard when he is suck on a tic that is causing him discomfort, when friends unknowingly “mimic” the motor tics, or when he is stuck on the same word (or word part) around other people. Most of the time patience, understanding, and humor are enough to cope.
great post!
my daughter had TS. I took her to get an official diagnosis just 2 years ago, although she started showing signs at 3. I decided it was finally necessary since the tics were getting worse and starting to really effect her in school.
when we returned from the doctor and grandmom and dad asked what the dr said, I told them matter of factly that hr told us she must have swallowed a clock she’s so ticky. my daughter fell to the ground in a fit of laughter!
funny she has a nodding tic like you as well. I have dubbed it the “yes, mom” tic :)
some times it is hard as hell to smile after people isolate you for so long