Do you or your loved one have Tourettes Syndrome
By Gina Melo
Smashwords Edition
Published By
Gina on Smashwords
Copyright 2011 by Gina Melo
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Do you or your loved one have Tourettes Syndrome?
He blinked fast and hard and furrowed his eyebrows as he took a look around to see if he was being watched. He quickly rubbed his eyes as though that was the reason he blinked so forcefully. The rubbing of his eyes was an automatic move to cover the real reason he rubbed them . . . he, or she, has Tourette syndrome.
If you have Tourette syndrome and see someone make a sudden move (tic) or a cough or any other of the items on the menu that Tourette syndrome handed them, you automatically look away. You do this because you know the shame and embarrassment they go through when they know they’ve been spotted.
Embarrassment? Yes, embarrassment at being dealt a hand in life that could stay with them forever. I know because at this writing I am 72 and still try to hide and cover my embarrassing moments.
This short essay is not just for us who have it but also for all of the other people who spot us and sometimes are cruel to us . . . and this includes parents, so-called-friends and teachers.
A person with Tourette syndrome has no friend close enough to share their thoughts… they are all alone in their little world of “Why?” Nobody takes them by the hand and says, “It’s all right, I’m here with you.”
When a child first shows signs of Tourette syndrome, he (or she) does not know they are doing something different until they have it pointed out to them by their friends and family, and many times in a not so kind way.
My story began when I was about five or six years of age. I would shake my head violently and blink like a semaphore machine. In my mind I simply had a ‘habit’ that I thought would somehow go away. I developed a noise in my throat that sounded like, ‘Eeep!’ and that was when I was noticed by my family. They noticed it first because at home I was more relaxed with it and tended to display it more than when I was with friends. When a person with Tourette syndrome is with friends or around other people they tend to concentrate on the syndrome more and cover it better… at least that was what we thought.
It was at this point that my brothers started calling me “Shakey.” And it was at this time that my parents, mostly my dad, started yelling at me to ‘stop the noises.’
Of course I tried and succeeded for a few minutes, then tried to just ‘eeep’ low and of course I progressively got louder and he’d yell again. It got to a point that I would always be in a different room than him. I’m not angry with him as I realize that it was taking place in the early 1950s and he was an immigrant from Scotland and knew no better… he just wanted to ‘fix’ me.
I was brought to China Town in New York City on the advice of a family friend and I remember being in a store with an elderly Chinese gentleman who made up a concoction of powders for my mother to have me take. Result: I still shook my head and Eeeped on.
Then I noticed that walking down the street I avoided stepping in the same square of the cement sidewalk twice. This meant that at times I had to almost jump one and miss the next one… and I was so sure that nobody noticed… that’s the power of the mind: ignore what was reality and blind yourself into thinking that you are getting away with it.
I went to Catholic grade school and although I had almost 16 nuns over the eight and one half years I attended, one once had me stand in front of the 50 students as she asked me why do I shake some much. I was mortified and didn’t understand how she knew… after all I was always covering by rubbing my eyes or clearing my throat. Stupid me.
I worked as an artist for a magazine in New York and was and still am married with two boys of which one showed a very, very slight symptom of the dreaded disease. Happy to say it left him early. Thank God.
I didn’t know I had Tourette syndrome until I was in my middle sixties and it was one of the biggest shocks of my life. I was shocked and devastated to learn that my life wasn’t full of ‘habits,’ but that I had Tourettes. It was then that I pushed away all of the make believe reasons I had used for my own peace of mind and admitted the real reason.
Why do I (we?) shake my (our) head? I remember when I didn’t like someone I would look at them, then look to my right, close my left eye and swing my head to my left. This was my way of eliminating them even though they still stood there and, no doubt, thinking I was a nut who shakes his head whenever they are around. After awhile I would close my eye and eliminate things I didn’t like: a mouse in a mousetrap, etc. I don’t recall what excuse I used to create the Eeep, but it was along the same lines as the head shake.
The bottom line is this: people with Tourette syndrome have to work harder than those without the disease to be accepted. They need understanding especially when they are young and all alone with their thoughts.
Can a person with Tourette syndrome ever be ‘normal’? Well, if by normal we mean without Tourettes, I don’t know. I’ve read where some grow out of it, and my son is an example, but I know I never will and I’ve never asked another person with Tourettes if they are doing their ‘habit’ and cover up, less or the same.
Don’t leave a child with Tourette syndrome alone in that lonely world . . . it’s scary. Say to them “It’s alright . . . I’m here with you.”
End.