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Twitch and Shout

Twitch and Shout: A Touretter’s Tale

Lowell Handler
Foreword by Elkhonon Goldberg
With a New Afterword by Neal R. Swerdlow
Copyright Date: 1998
Edition: NED - New edition
Pages: 256
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  • Book Info
    Twitch and Shout
    Book Description:

    With a new afterword by Dr. Neal R. Swerdlow of the Tourette Syndrome Association Lowell Handler, who has Tourette’s syndrome, sets out on a journey through less than savory parts of America. From a transvestite bar in Tampa to a flophouse in New Orleans, he meets people who, like himself, don’t conform to the standards of conventional society. With a keen eye for detail and an acute sense of humor, this memoir captures the unforgettable life of a Touretter.

    eISBN: 978-0-8166-9658-1
    Subjects: History

Table of Contents

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  1. Front Matter
    (pp. i-x)
  2. Table of Contents
    (pp. xi-xii)
  3. Foreword
    (pp. xiii-xxii)
    Elkhonon Goldberg

    I met Lowell Handler a few years ago through Oliver Sacks, a mutual friend, and am delighted to write an introduction to his unique and poignant book. While I knew about Lowell’s about Tourette, there was nothing in our occasional social interactions to betray the pain that accompanied his coming to grips with his condition and the inner strength that made it possible. The manuscript both impressed me with its evocative power and left me a bit shaken by pointing out how unaware we often are about fellow’s anguish, despite the illusion of familiarity.

    I am a neuropsychologist and cognitive...

  4. Introduction
    (pp. xxiii-xxviii)

    This book was written with the hope of better things to come, as the epigraph I’ve chosen suggests. In the years since the events described in the first chapter, much has changed in all our lives. It is with this hope, and hindsight, that I look back on a journey that has taken me half my life, brought about much change, and showed me corners of the human experience.

    From the mideighties until the midnineties, I worked primarily as a photographer. In 1990, I began teaching at the School for Social Research, a university in New York City. At this...

  5. 1 Hitting the Road
    (pp. 1-15)
    Lowell Handler

    are not as bad as they used to be, but there are even more problems with my speech. Some words seem to become stuck in my throat and don’t make it out of my mouth. Other words I feel the need to shout out, emphasizing individual syllables. Sometimes, though, I thrust my arm away from my body, almost as though I am shaking something. I keep thinking maybe there is something really wrong with me—mentally. Am I fooling myself by imagining all these disruptions will disappear in time?

    I have dropped out after my second year at School of...

  6. 2 Talk Isn’t Cheap
    (pp. 16-29)

    I knew it at first sight. The French Quarter, New Orleans, with its incredible architecture, its seductive mix of charm and decadence, was an invitation to explore not just a city but myself. The Big Easy, it’s called, and I was immediately at ease. Meandering through the old narrow streets I smelled Creole sauces, gumbo, beer, and honeysuckle. I heard sounds of distant rhythms from brass instruments, partying, and raucous conversation. The air was and sultry, with scent and sound wrapping around me like a humid blanket.

    I had never seen anyplace like the French Quarter. The buildings are Spanish...

  7. 3 Diagnosis
    (pp. 30-47)

    At two A.M. in an all-night diner my brother, Evan, and I sat after a long night in the bars.“Lowell, you’ve got to go to the doctor or a hospital,” Evan insisted. “You’ve got to find out what’s with you.”

    “I don’t want to go,” I remember saying. “I’ll be OK. I know everything will work out.”

    In 1979, I had returned to New York from New Orleans and I was sharing a Manhattan apartment with Evan. Then were two compelling reasons for my return: the first was to finish college and the second was to find out what was...

  8. 4 Drugs and Orphan Drugs
    (pp. 48-63)

    After my diagnosis, I made an appointment with a neurologist at The New York Hospital that would lead to my long and complex relationship with drugs. The doctor to me that my symptoms could be made manageable a prescription of 3 milligrams a day of haloperidol, known by its trade name Haldol. Haldol is a psychotropic medication affecting certain chemicals in the brain called neurotransmitters that influence a wide variety of behaviors. It is suspected that people with Tourette have overabundance of dopamine, which is responsible for the ability to control and inhibit movement. Haldol reduces the amount of dopamine...

  9. 5 Life and Leukemia
    (pp. 64-87)

    I have always been much more comfortable shapes and colors than with letters or Growing up with dyslexia I had a difficult time interpreting words in print. I wanted to capture part of the world. as seen through my eyes, in black and white. I discovered that all I had to do was freeze something or someone in time and space.

    Photographing is an exhilarating experience for me. I am involved, an observer and a participant at the same time. It is difficult to write about photography or talk about it much, because the act is experiential and proactive. Photography...

  10. 6 Jet Set Tourette
    (pp. 88-113)

    How are we driven by Tourette and all of its influences? Are we prisoners in our own bodies? Does it distort reality, diminish free will? Is it an exaggerated expression of will? Does it create a “state of being,” as Oliver Sacks says, or is it just a movement disorder? Can Tourette result in a changed reality with everything formed around the “will” of the disorder and its demands?

    As I began to work more closely with Oliver Sacks, I wondered why he was so fascinated by people with Tourette. Was this thing simply an aberration or, as in Oliver’s...

  11. 7 Pot and Prozac Love
    (pp. 114-127)

    Ever since my discovery of Tourette, I’d searched for relief from my symptoms, which seemed to come and go with a will of their own.

    Now, in my apartment in Cold Spring, New Yourk, I slowly, and then with alarming frequency, experienced repeated outbreaks of obsessive-compulsive traits. Like others with Tourette, I had obsessive thoughts, intrusive recurring notions that were difficult to control. The compulsions would be seen in physical actions that had no apparent purpose, yet it seemed necessary to complete the action to obtain tactile or mental satisfaction.

    Many people with Tourette have obsessive-compulsive aspects of their personalities,...

  12. 8 Susanna and Marriage
    (pp. 128-141)

    Lying in bed, our two naked bodies touched gently after hours of lovemaking. I leaned over and put my arms around her slim, soft waist, nibbled on the curve of her neck, and kissed her ear. We were exhausted and it was the middle of the night. We spent what seemed like endless joyful hours talking and making love. She is charming, caring, cute, and lovable, I thought. I hugged and caressed her often, thinking she enjoyed the attention. I felt so good around her, we glowed in each other’s company. We could not stop talking and kissing, sharing our...

  13. 9 Twitch and Shout
    (pp. 142-161)

    It was the morning of Inauguration Day 1989, and I was watching the proceedings on television when I received a phone call from Laurel Chiten, a documentary producer. She said she was in New York from Boston and asked if we could meet for lunch. That meeting was the beginning of a five-year odyssey for us both that resulted in the groundbreaking documentary about Tourette,Twitch and shout.

    “I really didn’t know where I was going with this,” Laurel recalled about that first encounter. “As we talked you were touching me, and I felt this immediate intimacy with you, like...

  14. 10 A Second Chance at Life
    (pp. 162-175)

    My work onTwitch and Shout, and the reaction to the film, made it easier for me to ignore my personal problems and the continuing disintegration of my marriage. I had done a great deal of traveling for the film, which had allowed me to put my own problems out of my mind, but at last Susanna and I had drifted too far apart, partly due to my escalated marijuana use, and in some part due to my wife’s inability to connect to me emotionally. I continued to use pot as a crutch in dealing with everyday situations—before a...

  15. 11 Tourette Culture
    (pp. 176-187)

    For many years now, I had been preoccupied by the world of Tourette. Through my early work with the Orphan Drug Act and my collaboration with Oliver Sacks to my activities in the Tourette Syndrome Association and the shooting of the filmTwitch and Shout, I had been thinking about how we view the world differently due to our Tourette. I had spent much time pursuing my own inner journey, and now I wondered what we as Touretters have in common with each other, and what is different about each of us. Could it be said that there was a...

  16. 12 Crazy and Proud
    (pp. 188-204)

    In thinking about human “difference,” I realize that I am not unique. Many people experience far more extreme departures from normality than those of Tourette syndrome. Mental illness can cause people to hallucinate—hear things and see things that are not actually there. Whose reality is genuine? In addition to the way Tourette changes my perception of reality, it also changes that reality itself: other people’s reactions to me, and my reactions to their reactions. Why is one person called “crazy” and another “neurologically impaired”? Perhaps I too was one of the crazy people. I would find out by immersing...

  17. Afterword
    (pp. 205-218)

    We know much more about Tourette Syndrome (TS) than we know about “Touretters.” As Lowell Handler recognized, each person with TS “has it differently”: their thoughts, behaviors, personalities, and life experiences reflect complex influences that cannot simply be attributed to the brain processes that underlie the motor and vocal tics that are clinical criteria for a diagnosis of TS. Lowell tells of shared experiences among Touretters, both in their symptoms and in the reactions their symptoms elicit from the people around them. But the most compelling characteristics of each individual we meet through Lowell come not from the tics caused...

    (pp. 219-224)
    (pp. 225-226)
  20. Back Matter
    (pp. 227-227)