Living with Tourette Syndrome. Can it be done? Is it hard? Is it genetic? If I have it, will my children have it? Is there a relief? What causes it? Will it go away? Can it be treated? Cured?
These are all good questions. I've asked myself all of these at one point or another. You see, I have Tourettes.
A little background. I can remember the first time I realized something was wrong; I was in kindergarten. My teacher had a point system, we started out with a certain number of points each day and if we were bad or disruptive we lost a point. Every week we would learn a new letter of the alphabet. Then we would take turns drawing the letter on each others backs three times. One week our teacher decided we didn't need to draw the letter on the others backs so we had story time instead. I remember feeling....tense? Stressed? Agitated? I can't really explain it. I wanted, no, needed to - had to draw the letter on someone's back. We couldn't skip a letter. They all had to be drawn on someone's back. They had to. There was no exception. It could not be avoided. oh I tried to resist. Believe me I tried. But during story time that day my hand reached out and traced the letter J on the back of the kid next to me. He squirmed and complained and the teacher told me not to. But that was only once, it had to be done three times. So I did it a second time. This time I got my first warning. Once more and I would lose a point. But it had to be done. I was so close, I couldn't stop now. I tried so hard just to sit there. But it seemed as though I had no control. So I did it. Quick as I could. The last J on his back. And I lost my first ever point. I was distraught. I had never lost a point. Why couldn't I just keep my hands to myself like everyone else? This is very confusing to a six-year-old mind.
I can remember my many more situations like this one. I didn't actually get my diagnosis until I was around 12 and ever since then I have read and soaked in as much information and research about Tourettes as I could. I've asked the previously mentioned questions many times, but unlike most I've actually taken the time to find out the answers. I hope you came here looking for answers too, because you're about to get them.
YOU CAN LIVE WITH TOURETTES. Is it hard? It really depends on the day. Think of it like a roller coaster. Some of the time its smooth sailing, you can sit back and relax. But then you turn a corner and plunge down into the spinning vortex of doom. That's a little dramatic maybe, but you can feel very out of control and depending on your tics it can be embarrassing, uncomfortable, or even painful. But roller coasters always have easy turns and at some point they've gotta climb, right?
Genetics? If I have it will my children have it?
Not necessarily. Both parents have to carry the Tourette gene, weather they have symptoms or not, in order for any of the children to inherit. And even then its not for sure that they will. Out of five children I'm the only one to inherit it in my family.
Tourette Syndrome is cause by a "deregulation of serotonin in the brain". Basically, stuffs messed up in my brain. But there is a relief. A few actually. Here are just a few suggestions. First, find yourself a good doctor who is willing to work with you to get you the meds you need. I tried three or four different medications before I found the one that works. My doctor was very patient and willing to do research. For that I will be forever grateful. Second, practice some self control. They say that it's possible to suppress all of the tics with medication. But in my experience, that's not true. It helps, for sure. But everyday is a constant struggle. Every hour I am fighting not to lose control. It gets easier after a while to suppress the tics. It becomes almost second nature to fight the battle raging in my head and, it seems, my entire body. It takes practice, bit it does get easier. Number three goes with number two. Find a safe space. A place where you can go to tic and scream and let it go. The more you practice, the less you will need to use your safe space. And fourth, find your release. The activity that helps you not to tic, or helps you to "forget" to tic. Everyone has one. For most people with Tourettes its some form of music. Yours could be writing, or soccer, or horse back riding, or making jello for all I know. It's there. Find it. Use it. It helps so much.
My friends, there is no cure. For some it just goes away in the late teens. I'm currently 21 so I missed that boat. But, its ok, you know? You learn to deal. You learn to breath. And you learn to take it one day at a time. Because when that rose coaster is spiraling into the vortex of doom it makes you all the more grateful for the slow turns when you can sit back, take a deep breath, and get ready for the next plunge. But hey, who doesn't like roller coasters??