My Life As A Hostage

I have memories of my Tourette's tics as far back as second or third grade. Back then, I wasn't diagnosed as having Tourette's. I was "disruptive". I was "hyperactive", "easily distracted" or I was someone who "doesn't pay attention in class". I got in trouble more times than I can count for interrupting class or not paying attention in church, and my ass saw it's share of beatings.

It wasn't until August of 2006, that I started to display tics that made me think something was wrong with me. When I had certain memories come up, or when I was especially stressed, my entire upper body would start to jolt violently. The frequency of these tics increased last Spring to the point where I was having hundreds of tics per day.

I was finally diagnosed as having Tourette's Syndrome on June 25th, 2009, at the age of 34. I was thrilled to finally have a diagnosis and a name to what I had been experiencing. I knew that this was something I wasn't going to die from, and, with medication, I could expect a fairly quick recovery. I couldn't have been further from the truth....

What I didn't know was that my brain was like a leaking dam. By trying to plug one hole, I had caused two more cracks to appear. My upper body jolts were starting to stop, but new tics were starting. These were tics that even my neurologist (a former head at Barrow Neurological Institute) had never seen.

I had developed an accent tic. Mid-sentence I will change accents, often to Northern Irish. I even will incorporate local slang and curse words. Then, as suddenly as it appeared, it will disappear...often mid-sentence. Stranger still, another accent that I have picked up is Matthew McConaughey. That one really annoys the wife.

I have also developed a migraine tic. Theoretically, I shouldn't be getting migraines since one of my Tourette's medications is also a drug to prevent migraines. I now have a migraine of some grade pretty much 24/7. The worse my migraine gets, the less I have any other tics; the migraine completely takes over my brain. The migraine will eventually get so painful that no medication will alleviate it and I have to go to the ER.

I have developed more common, and more frustrating Tourette's tics, like having to repeat a word over and over until it sounds right to me, or (a new one for me) the need to touch the top of my head over and over. I still have my upper body jolt, except now it is accompanied with a bark.

I entitled this post, "My Life as a Hostage", because that is exactly what it feels like to me. I foolishly felt like I was getting better over the last week or so. I went grocery shopping today and when I came home I started ticking again. I realized the reason I was feeling better is because I haven't left the house in ten days. My wife said something to me and I said "OK". Then, I yelled back "OK" more than a dozen times for the next two minutes as I walked to the dining room and sat down at the table. A voice in my head was telling me "Shut up. Stop it", while another voice was saying "He can't". It was like I was being held hostage. When I have to keep tapping the top of my head, it is usually while I am driving (I know...scary). It is entirely beyond my control. I'm steering with my knees and thinking about a bully in grade school, taking control of my arms, saying, "Why are you hitting yourself"? The worst one is the accent. It's like being a ventriloquist dummy. The worst part is, you never know when it's going to come.

For those of you without Tourette's, I can only describe it as if someone has stolen the remote that controls your body, and occasionally, just for kicks, makes you do things you don't want to.

I want my remote back.