James A. Fussell - Ticked: A Medical Miracle, a Friendship, and the Weird World of Tourette Syndrome

Copyright 2013 by James A. Fussell and Jeffrey P. Matovic

Foreword copyright 2013 by Jeff Foxworthy

All rights reserved

First edition

Published by Chicago Review Press, Incorporated

814 North Franklin Street

Chicago, Illinois 60610

ISBN 978-1-61374-380-5

Library of Congress Cataloging-in-Publication Data

Fussell, James A.

Ticked : a medical miracle, a friendship, and the weird world of Tourette syndrome / James A. Fussell with Jeffrey P. Matovic ; foreword by Jeff Foxworthy. First edition.

pages cm

Summary: An inspirational tale of personal struggle with and triumph over Tourette syndrome, this is the story of Jeff Matovic and the radical treatment he sought to cure himself. After suffering from Tourettes for yearswith his tics and outbursts getting progressively worse and with no results coming from drugs or physical or spiritual therapyJeff was able to convince his doctors and his insurance company to try a risky deep brain stimulation treatment, a surgery that involves the implantation of a pacemaker for the brain into his skull. Penned by a journalist who is also afflicted with Tourettes, this is the incredible story of a friendship that blossomed under their common experiences with this bizarre brain disorder. A complete discussion of the latest medical research of and treatments for Tourettes, written in accessible and easy-to-understand terminology, is also included Provided by publisher.

ISBN 978-1-61374-380-5 (hardback)

1. Matovic, Jeffrey P.Health. 2. Fussell, James A.Health. 3. Tourette syndrome PatientsUnited StatesBiography. 4. Tic disordersPatientsUnited StatesBiography. I. Matovic, Jeffrey P. II. Title.

RC375.F87 2013

616.83dc23

2012046321

Interior design: PerfecType, Nashville, TN

Printed in the United States of America

5 4 3 2 1

For anyone whos ever had an impossible dream

WE ARE PROFOUNDLY grateful and indebted to the late Dr. Robert Maciunas (19552011) for his incredible skill and intelligence, his enduring commitment and creativity, and his remarkable sensitivity and empathy. Consistently he went far beyond what was required of him, as a doctor and a man, to both save and change the lives of his patients. Personally and professionally, he was a shining example of hard work, stunning achievement, and all that is good in the world. Jeff and I hold him in the highest regard, and are honored and humbled to dedicate this book to his memory.

Jeff Foxworthy

I KNOW WHAT its like to walk into a room and have people stare at youto see someone nudge and whisper something to the person next to them and then have the two turn and not-so-discreetly check you out. Its uncomfortable. I often have wished that I could just blend in. I imagine that must be a little of what it feels like to have Tourette Syndrome.

The difference is that I brought it on myself. And dont get me wrong; I love being a stand-up comedian. But comedians by nature are observers. We arent very comfortable with being the observed. We want to get to know peoples stories because within them are the common threads that tie us all together, and that is where the comedy lives.

I met Jim Fussell while doing a phone interview with the Kansas City Star newspaper to promote an upcoming live show I had in the area. It was the last interview in a string of five and was scheduled to last twenty minutes. Jim asked good questions, and I tried to provide entertaining, honest answers. We hit it off right from the get-go. As the interview progressed I starting asking him questions, looking for that common thread. It was then that he told me that he had Tourette Syndrome.

To be honest, I wasnt exactly sure what Tourette Syndrome was. I thought it was a disease that made you shout obscenities at random moments. In fact, I have a friend who talks in a very colorful language when he gets excited, and we have often jokingly accused him of having Tourettes. But as my grandmother used to say, You are never too old to learn. So I asked Jim what Tourettes wasexactly? After all, we had been talking for a good half hour, and he had yet to shout a cuss word.

Jim explained that Tourette Syndrome was a misfiring of signals in the brain that caused a variety of afflictions or tics. Some people did indeed shout obscenities, while others might suddenly snap their head or flail an arm or leg. One lady had impulses to undress strangers. The comedian in me pondered that one for more than a moment. He told me that while there was no real cure, he had met a man who had symptoms so severe that he had risked his life to have a surgery that involved deep brain stimulation, and that his tics had disappeared. To be more accurate, they had been controlled.

This incredible mans name is Jeff Matovic. Jim found out about him after personally interviewing Oprah Winfrey. Jeff had appeared on an episode of Oprah and explained the horrors of this wicked disease and his life-changing surgery. Jim knew at that moment that he had to meet this miracle man.

And he did. And they talked. And Jim learned that when Jeffs tics were at their worst and his body ached so much that he wasnt sure if he would live through the hour, that the only way he could find relief was to listen to one of my comedy records.

What? Youve got to be kidding me! I said. And you and I are talking now? This was starting to get weird. Our twenty-minute interview was now past the hour mark and I had no intention of hanging up the phone. I was fascinated.

Jim, I said. You have to tell this story. It was then that he mentioned that he had started writing a book about it, and asked if I would like to read an early draft. Absolutely I said, and a week later it arrived.

I read it in one sitting. It is a courageous piece of work. Jim has opened a door to a room that most people had no idea existed. He tells his story in conjunction with Jeffs story and he tells it with honesty. It is a story of frustration and hopefulness, a story of embarrassment and dignity, a story of great pain and of miraculous success. And within their story is the story of all of usour desire not to be a freak or a weirdo, but to just be a man or a woman who is loved and accepted.

After reading the book I knew I had no choice but to call Jeff Matovic. When he answered the phone I said, Jeff, this is Jeff Foxworthy and there was a momentary silence. Oh my gosh! he said. There were moments when you saved my life.

My eyes immediately welled up with tears. I was just trying to make people laugh. Saving someones life had never factored into the equation. As we talked for a half hour I was overwhelmed with this mans faith, compassion, and goodness. After spending decades in pain and ridicule he had zero bitterness, only joy. His only desire was to encourage others.

When I hung up I thought about our conversation. I would never want the hand that either he or Jim had been dealt, but I hoped that if I had, I would handle it with half the grace and fortitude these two have shown. See, when you get to know the story of someone with Tourette Syndrome, you might stare at them when they walk into a room, but no longer out of morbid curiosity. It would be a stare of utter admiration.

This book is about more than one miracle man. It is about two of them, and then again it is about a million of them. It is about everyone with an affliction or deformity, everyone bald from the ravages of chemotherapy, everyone using a wheelchair or a walker. It is the story of each of us and of our quest for normalcy when in fact no one is normal. It is the story of our common humanity.