I have Torrette’s syndrome.
Actually it’s a mild version called a Large Motor Tic Disorder.
I don’t volley out curse words randomly, although I do let them escape from my lips somewhat involuntarily from time to time, but that’s situational not medical. It’s my hands that won’t sit still. I can make them sit still. I can hold them in my lap if I notice what I’m doing. I can order them to go under the table and tic down there.
My hands only somewhat pay attention, so great is my urge to tic. It’s like an itch that’s uncontrollable. It takes all your energy to control it. Even under the table I can’t choose the exact form it wants to come out in. I scrape the daylights out of my pinkie on a regular basis. It’s a battle sometimes to pay attention when I’m fighting the urge to tic so hard.
The facial tics aren’t so bad. I look like I’m stifling a yawn.
People notice and they wonder. “Are you cold?” they ask politely as I shake in my seat.
“No,” I just have Torrette’s,” I tell them.
They look at me with horror in their eyes. We all have our limitations right? So I say move on. I can have this disorder and do whatever anyone else does. Maybe even do it better.
I was at the School of the Blind once. There were several kids there who had a host of issues. Quite a few had tics they couldn’t control. I envied them their freedom to tic. They did it without remorse in big swift movements. When you’re excited, tired, hungry, worried, it just feels so good. I didn't envy them the prison their tics and other issues locked them in. At least my tics are mild. A lot of people who know me don’t even know I have this disorder. But it shouldn't matter if my tics are mild or extreme. I'd be me either way.
What kind of man would fall in love with a woman who claps her hands and contorts her face regularly.? Sometimes even in public. You’d be surprised. There are men who can still love you. Who still want you. Who don’t even notice and then one day say “hey, I notice you do this thing.” And when you tell them they say “that explains it” and that’s the end of the whole conversation.
When I was a little girl I was always told to “sit on my hands.” I couldn’t explain how much I wanted to not do it or how much I needed to do it to relieve the surge of energy inside me. Sometimes it was stress and negative tension. Sometimes it was adrenaline and exciting ideas. Sometimes it was suspense and the terror of not knowing. But always it was there driving me to be that freak in the back of the room.
I’m not a girl with Torrette’s. It doesn’t define me. Lots of people are surprised to even find out I have it. But, I am a girl with Torrette’s. It is a filter through which I experience my life and my emotions everyday. It doesn’t get any worse and it doesn’t get any better. It is simply the way it is.
There are the jobs I didn’t get. The boys who didn’t ask me out. The strangers who look at me with pity. Still there are the jobs I earned. That book I wrote and even won a couple of contests with. The man who married me. The family that loves me. The strangers who don’t make a thing out of it if they catch me in a hallway.
There are medications. I can’t take them, though. One has the unpleasant side effect of lowering your blood pressure. A lot. And I already have blood pressure that is too low. Another is for anxiety. They don’t like to prescribe it to people who don’t have anxiety. At least people like me, who only have the normal amount, whatever that is.
The doctor suggested I do some behavioral therapy. I could learn with years of practice to control my tics and have them come out in less obvious ways. I’m 35 years old, though. I already did that on my own. I guess life is behavioral therapy enough.
I’m not Rain Man, but, I’m not completely normal either. I guess no one is completely normal so what’s the difference, anyway? Life is what it is. You can let your limitations define you or you can define them.
How many times do I get asked per day if I'm cold? Who knows?
"No," I say with a smile, “That’s just my Torrette’s” and on I go with my business. It’s the business of moving on and focusing on the joy in my life. There isn’t any other way to live.
Actually it’s a mild version called a Large Motor Tic Disorder.
I don’t volley out curse words randomly, although I do let them escape from my lips somewhat involuntarily from time to time, but that’s situational not medical. It’s my hands that won’t sit still. I can make them sit still. I can hold them in my lap if I notice what I’m doing. I can order them to go under the table and tic down there.
My hands only somewhat pay attention, so great is my urge to tic. It’s like an itch that’s uncontrollable. It takes all your energy to control it. Even under the table I can’t choose the exact form it wants to come out in. I scrape the daylights out of my pinkie on a regular basis. It’s a battle sometimes to pay attention when I’m fighting the urge to tic so hard.
The facial tics aren’t so bad. I look like I’m stifling a yawn.
People notice and they wonder. “Are you cold?” they ask politely as I shake in my seat.
“No,” I just have Torrette’s,” I tell them.
They look at me with horror in their eyes. We all have our limitations right? So I say move on. I can have this disorder and do whatever anyone else does. Maybe even do it better.
I was at the School of the Blind once. There were several kids there who had a host of issues. Quite a few had tics they couldn’t control. I envied them their freedom to tic. They did it without remorse in big swift movements. When you’re excited, tired, hungry, worried, it just feels so good. I didn't envy them the prison their tics and other issues locked them in. At least my tics are mild. A lot of people who know me don’t even know I have this disorder. But it shouldn't matter if my tics are mild or extreme. I'd be me either way.
What kind of man would fall in love with a woman who claps her hands and contorts her face regularly.? Sometimes even in public. You’d be surprised. There are men who can still love you. Who still want you. Who don’t even notice and then one day say “hey, I notice you do this thing.” And when you tell them they say “that explains it” and that’s the end of the whole conversation.
When I was a little girl I was always told to “sit on my hands.” I couldn’t explain how much I wanted to not do it or how much I needed to do it to relieve the surge of energy inside me. Sometimes it was stress and negative tension. Sometimes it was adrenaline and exciting ideas. Sometimes it was suspense and the terror of not knowing. But always it was there driving me to be that freak in the back of the room.
I’m not a girl with Torrette’s. It doesn’t define me. Lots of people are surprised to even find out I have it. But, I am a girl with Torrette’s. It is a filter through which I experience my life and my emotions everyday. It doesn’t get any worse and it doesn’t get any better. It is simply the way it is.
There are the jobs I didn’t get. The boys who didn’t ask me out. The strangers who look at me with pity. Still there are the jobs I earned. That book I wrote and even won a couple of contests with. The man who married me. The family that loves me. The strangers who don’t make a thing out of it if they catch me in a hallway.
There are medications. I can’t take them, though. One has the unpleasant side effect of lowering your blood pressure. A lot. And I already have blood pressure that is too low. Another is for anxiety. They don’t like to prescribe it to people who don’t have anxiety. At least people like me, who only have the normal amount, whatever that is.
The doctor suggested I do some behavioral therapy. I could learn with years of practice to control my tics and have them come out in less obvious ways. I’m 35 years old, though. I already did that on my own. I guess life is behavioral therapy enough.
I’m not Rain Man, but, I’m not completely normal either. I guess no one is completely normal so what’s the difference, anyway? Life is what it is. You can let your limitations define you or you can define them.
How many times do I get asked per day if I'm cold? Who knows?
"No," I say with a smile, “That’s just my Torrette’s” and on I go with my business. It’s the business of moving on and focusing on the joy in my life. There isn’t any other way to live.
I love you sister. Im glad to hear you finally speak out about your tics. I don't even notice now whhen I'm around you. I love you sooooooo much and I am so proud of you and everything you've accomplished. You are an amazing sister, wife, and mother. I could never ask for a better sister. Never change my love :)
ReplyDeleteWow! Thanks for sharing Tiffany. I remember you being told to sit on your hands and, while reading, I could remember, sort of, your tics. But in my mind it's just Tiffany. You just are who you are and I guess that's what you're saying. So you move your hands a lot. It's part of your specialness. :)
ReplyDeleteThanks for sharing something of such a personal nature. I had a student this year with Torette's. He had severe facial tics, but he was also one of the most personable kids I've ever had the pleasure to teach! Such a thirst for learning, especially about snakes, frogs, dinosaurs and Spiderman.
ReplyDeleteLike you, he'll probably grow up to accomplish great things.
Tiffany - my husband has been dealing with a facial tic for many years now.(Diagnosed as a hemifacial blepharospasm) Through him, I understand some of what you deal with daily. I'm glad you've learned to handle it both physically and emotionally.
ReplyDeleteHugs, Becky
www.BeckyBarker.com
Tiffany - What a beautiful post. My daughter attends the School for the Blind and having gone there for a few events, I know exactly what you are talking about (seeing the children and them just letting loose) -- but they are some of the most beautiful children in the world. Continued best wishes and success in life and in writing. :)
ReplyDeleteTabitha
TIffany - You are amazing.
ReplyDeleteThanks for sharing your story. I really think that the only way to end some of the stigma over uncontrollable things is to speak out about them.
ReplyDelete