Don't Think About Monkeys
This is a page dedicated to my son, Aaron, who has Tourette Syndrome and has lived with the stigma of it all his life. I hope that this page is informative to you, the reader, and that it helps reduce the misconceptions in this often, misdiagnosed, disorder. Please keep in mind that I'm not an expert nor a doctor, but am only writing from my own experiences.
This introduction was taken from the book ... Don't Think About Monkeys
There is a story about an Indian businessman who heard about a holy man who could walk on water. The businessman reasoned that if he could walk on water the publicity would help his business. He decided to seek out the holy man.
The holy man heard the businessman's interest in walking on water and agreed to take him as a disciple. "All you need to do is follow these meditations, stop eating these foods and read these prayers. Then you can walk on water like me."
The businessman smiled with delight. "That is it? Wonderful! I'll start today." He headed for the door.
The holy man cleared his throat. "There is just one more thing. It's a little thing but very important."
The businessman stood in the doorway impatiently. "Yes?"
"Don't think about monkeys."
Inside the businessman's head a stream of monkeys appeared; waltzing, dancing, eating and playing. He walked out the door and saw two monkeys by his car. As he drove home he pictured every monkey he had ever seen in a book. That night monkeys swung through his dreams. Within a week he was monkey mad.
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Having Tourette Syndrome is a lot like not thinking about monkeys. The monkeys are the tics, vocalizations, urges, obsessions, behaviors and enactments that are with us constantly, overwhelming our daily lives. To live and function we have to keep the Tourette Syndrome at bay - we have to try not to think about monkeys. This book is about how fourteen people with Tourette Syndrome survive and grow in their lives despite all those damn monkeys.
But before you read these stories of peoples lives you need to understand what Tourette Syndrome is. Since it was first described accurately over a hundred years ago by Dr. Georges Gilles de la Tourette, the misconceptions about this neurobehavioral disorder have challenged the lives of both those with it and those who treat it.
The popular conception of Tourette syndrome is of a movement disorder:tics. The second image is of the disease that makes people swear. The third image is that it is very rare and very severe. These are all true to a degree: people with the disorder must have a tic component to be correctly diagnosed; coprolalia (involuntary swearing) is present in about thirty percent of the people who have it; the full scale case is thankfully rare. But if that were all Tourette Syndrome was, then this book wouldn't be needed.
Tourette Syndrome is considered a very common genetic behavioral disorder characterized by a lack of inhibition. The inhibition may be around movement resulting in tics or twitches. It may be a problem inhibiting speech or sound resulting in vocalizations. It may be a breakdown in thought or action resulting in obsessive compulsive disorder. It may be a breakdown in controlling one's concentration resulting in attention deficit disorder. It may even be a problem controlling emotion, like in the depression Maura writes about or the anger my grandfather was unable to suppress.
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The most common form of Tourette Syndrome is a problem of impulsivity: of controlling addictive behaviors. You'll read a lot about alcoholism in this book - it can be a part of the disease. It is also part of the solution as the tools people with substance abuse issues use - the twelve steps - are applied by John to Tourette Syndrome in this book's conclusion.
Every aspect of behavior can be affected by Tourette Syndrome. Yet the person with Tourette Syndrome is not a loaded cannon waiting to explode. images/vabuse.jpg The miracle of tic suppression, or substitution, allows one to put off symptoms until a safe or appropriate place for them is found. For me it is my home. For others it is in the car, playing a musical instrument, or on the ball playing field. This hidden blessing of suppression, so painfully learned, so hard to develop, allows people with Tourette Syndrome to find the accommodations in their lives that make it worth living. It is our way of not thinking about monkeys.
So enter what Christian calls "Our Tourette World." Linger awhile with people who seem very different from the average person you may know. And look in the mirror of the Tourette Syndrome experience: You may see yourself looking back!
Top..........written by Adam Ward Seligman