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A Soul-Deep Insiders Look at a Neurological Disorder:


Extraordinary Stories by
People with
Tourette Syndrome

by Adam Ward Seligman and John S. Hilkevich

Forward by Dr. Oliver Sacks

Hope Press, CA, 1992

Order here for only $12.95, see details below

        Oliver Sacks:  "We have many medical accounts of Tourette syndrome, but far too few stories "from the inside," stories of what it is like, what it means, to live with Tourette syndrome, every day and minute of one's life; how others respond to it, and how, finally hopefully, one may come to terms with it. "

        Don't Think About Monkeys is a remarkable collection of stories written by fourteen people who live with Tourette syndrome. Ranging from three teenagers learning to come to grips with teasing to adults encountering discrimination, the collection represents the incredible diversity of a disorder as diverse as life itself. The drama of living with a disability and the comedy of a Tourette syndrome conference show the range of a book the Oliver Sacks called "A fascinatingly varied book."

        Many ask about the origin of the title. The first paragraphs of this very personal and reflective, disclosing book illustrates:

        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 agreed to take him as a disciple. "All you need to do is follow these meditations, stop eating these foods and say 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."

        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 TS at bay ~~ we must try to not think about monkeys.

        In his forward, internationally known neurologist and writer, Dr. Oliver Sacks, commented: We have many medical accounts of Tourette syndrome, but far too few stories "from the inside," stories of what it is like, what it means to live with Tourette syndrome, every day and minute of one's life, how others respond to it, and how, finally, hopefully, one may come to terms with it. This collection of fifteen personal accounts gives a vivid sense of all the different ways in which Tourette syndrome may affect a person -- for it is never the same in any two people -- of the suffering and complex social difficulties it may cause, but equally of the great range of resources (human and social no less than medical) which can turn a tormented or disabled life into a decent, even creative, one.

        Some of the narratives in "Don't Think About Monkeys" are from young children or adolescents -- the first generation, as the editors point out, to get a prompt diagnosis of Tourette syndrome.

        Other accounts relate what used to be all but universal -- a delay of ten or twenty or more years, years of deep uncertainty, and sometimes accusations, before the diagnosis was made....

        ...One can learn to be on good, and even friendly, terms with one's Tourette -- this is the central theme of John Hilkevich's remarkable piece, "Making Friends with Tourette Syndrome," in which he speaks of the pluses and minuses, the transparency, the intensity of Tourette..."Tourette syndrome is integrated into my spirituality. It has been both a curse and a gift. It has both isolated and connected me...With the same intensity of a Tourettic tension, I can fell in my body the hop of a rabbit or the surrender of a hawk in flight to the winds. I physically and emotionally feel the life force gushing from the wound of an injured animal or leaking from a plucked tomato...How thin and transparent are the boundaries of life and death!"

        Some people with Tourette syndrome may be maintained on medication, with such control of their Tourette that they can all but forget it. But for those who cannot be pharmacologically "controlled" -- or who, perhaps, as adults, may decide they do not wish to be -- there is, finally, beyond mere "coping" or "acceptance," this possibility of a profound integration as Hilkevich describes; and this, perhaps, is the deepest theme of a fascinatingly varied book.

        Here's what a few readers had to say about Don't Think About Monkeys:

        "Informative, helped me understand what the touretter is feeling. (I am the parent). I understood that my son was not alone in some of the ways he feels on and off the medications."

        "I am a parent of a twenty year old with Tourettes Syndrome. This book helped me understand how my son views the world. I just didn't realize the numerous behaviors related to Tourettes. I wish I would of read this book ten years ago. It would of made me a little less critical of some of his behaviors. This book is a must for anyone wanting to understand more about Tourettes."

        "This book gives you a first-hand view to the complexities of this disorder. In reading through these stories, all those things that my child described were relayed in these pages. After reading this book, I finally found someone that described why our situation was so difficult. All those things that the doctors said fell into the "grey-area" were touched upon. "Don't Think About the Monkeys" provides you with the understanding you need to give your child the compassion and empathy he needs. If you're looking for material that will give you some insight -- this is the book."

        To order your copy of Don't Think About Monkeys, send a check or money order (U.S. currency only) to

John Hilkevich
Literature Order
45 N. Eastview Avenue
Feasterville, PA  19053

        Include your name, mailing address, item desired, $12.95 price plus $2.50 shipping/handling ($15.45) for each copy.  All orders are promptly filled.

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