Ticked

by James A. Fussell

  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 Tourette’s for years—with his tics and outbursts getting progressively worse and with no results coming from drugs or physical or spiritual therapy—Jeff 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 Tourette’s, 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 Tourette’s, 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— Patients—United States—Biography. 4. Tic disorders—Patients—United States—Biography. I. Matovic, Jeffrey P. II. Title.

  RC375.F87 2013

  616.8’3—dc23

  2012046321

  Interior design: PerfecType, Nashville, TN

  Printed in the United States of America

  5 4 3 2 1

  For anyone who’s ever had an impossible dream

  WE ARE PROFOUNDLY grateful and indebted to the late Dr. Robert Maciunas (1955–2011) 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.

  Contents

  Foreword by Jeff Foxworthy

  Author’s Note by Jim Fussell

  Author’s Note by Jeff Matovic

  1 Where’s My Miracle?

  2 Second Chance

  3 Umm … Are You Taking My Clothes Off?

  4 The Hand of Satan

  5 The Tic Explosion

  6 Dr. Dream Crusher

  7 Jumping Out of My Skin

  8 My Search for Relief

  9 I’d Rather Have Cancer

  10 I Know How to Kill My Tourette’s

  11 Butter and Salt on Your Neurons?

  12 “I Need You to Cover Oprah”

  13 Hope in the Mail

  14 I Have a Bazillion Questions

  15 “What Are You, Stupid, Matovic?”

  16 Comfort from Katie

  17 A Teenager with Tourette’s

  18 Come on, Jesus, Time to Spill Corn Flakes

  19 Saved by Sports

  20 “God Bless You, Jeff Foxworthy!”

  21 John Carroll University

  22 Deep Brain Stimulation

  23 Cemetery Man

  24 Luvox, Klonopin, and a Suit to Be Buried In

  25 “Get in Here and Take Care of Me!”

  26 “Nice Boots!”

  27 “Jeff, It’s Deb. Where Are You?”

  28 “How Much Do You Love Me?”

  29 A Little Beige on the Side

  30 Debra’s Dilemma

  31 Learn to Live with Your Pain

  32 Take a Chance on Me

  33 A Real Kick in the … Pants

  34 Testing, Testing

  35 Quarter-Million-Dollar Insurance Dance

  36 The Story of Medtronic

  37 Dr. Robert J. Maciunas

  38 Keep Calm

  39 Last Rites

  40 Tic Tic Tic

  41 The Pre-Op Comedy Hour

  42 Turn Me On, Tina

  43 “Welcome Back to Your Life”

  44 Telling the World

  45 Oprah and Good Morning America

  46 Shining Star

  47 “What Do You Mean I Won?”

  48 Revenge of the Weirdos

  Epilogue

  Acknowledgments

  Foreword

  Jeff Foxworthy

  I KNOW WHAT it’s like to walk into a room and have people stare at you—to 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. It’s 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 don’t get me wrong; I love being a stand-up comedian. But comedians by nature are observers. We aren’t very comfortable with being the observed. We want to get to know people’s 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 wasn’t 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 Tourette’s. But as my grandmother used to say, “You are never too old to learn.” So I asked Jim what Tourette’s was—exactly? 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 man’s 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 Jeff’s tics were at their worst and his body ached so much that he wasn’t 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? You’ve 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 Jeff’s 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 us—our 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 someone’s life had never factored into the equation. As we talked for a half hour I was overwhelmed with this man’s 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.

  Thank you, Jim and Jeff, for your bravery in sharing your story with all of us. And may each of us leave this story with a new understanding and expanded compassion for others. You are heroes to all who know you.

  God Bless.

  Author’s Note

  Jim Fussell

  IF I’VE LEARNED anything from being a newspaper reporter for nearly thirty years, it’s this: our lives are jigsaw puzzles, and the pursuit of happiness nothing more than the search for their missing pieces.

  This book is about just such a search. At its heart it’s about how a thirty-year-old Cleveland man named Jeff Matovic tried to engineer his own recovery from one of the worst cases of Tourette Syndrome doctors had ever seen. For years his complex neurological tics worsened, leaving him suicidal. Desperate but determined, he latched onto one final chance—groundbreaking and experimental surgery that had never completely worked on someone with Tourette’s.

  For Jeff, finding a doctor courageous enough to attempt the operation meant a chance at a new life. For me—a person who has had Tourette’s for nearly fifty years—finding Jeff meant finding a piece of my own puzzle that I was convinced didn’t exist.

  And that’s really the point. This book is about more than just Jeff, or surgery, or Tourette Syndrome. It’s about every person who’s looking for a puzzle piece they’ve all but given up on finding. I am convinced there are pieces to fit all our puzzles; the trick is to never stop looking. That’s as close as I can come to understanding the meaning of life. I truly believe we’ve all been put on this planet to work on our personal puzzles, and to help others work on theirs.

  This story can help you with that. It is by turns impossible and inspiring. It will make you care and help you believe.

  There’s a reason why you picked up this book. Perhaps you needed to laugh, or cry. Maybe you needed a little emotional fuel to keep you going. Or maybe, like me, you just needed to realize that the pieces you seek to complete the puzzles in your life are possible to find.

  Just remember, miracles do happen. And even when all seems lost, there is a reason to keep going.

  It’s called hope.

  Author’s Note

  Jeff Matovic

  “A moment’s insight is sometimes worth a life’s experience.”

  —Oliver Wendell Holmes

  I’VE DISCOVERED SEVERAL intriguing facts in my life, some through self-exploration and others by sheer coincidence. Either way, they have been great teachers of life lessons.

  Celebrate life’s’ small victories.

  Fight for what you want and take it! Life will not always hand it to you.

  Create a visible blueprint to guide you to your goals.

  Maximize your potential.

  Embrace change.

  Don’t limit yourself.

  The moment you think you can’t go a step farther is often the exact moment when there is the biggest reward on the other side.

  Never allow someone else to define the parameters of your life.

  But it wasn’t until 2004 that I realized how much my relentless pursuits would pay off. And the truth of my effort rolled over me like a steamroller as I lay awake on an operating table with a world-class neurosurgeon rooting around in my brain. I discovered that the impossible was indeed possible after all, and ever since that day I’ve lived a life I thought never existed—a normal one.

  Whoever you are, you will find yourself in this book—and something for yourself in this book. This book is about the relentless pursuit of what many of us cannot explain. Page by page, you’ll find yourself on a journey—a journey through the brightest of days and the darkest, coldest nights. You’ll find yourself searching for hope—and find that there is hope—and wondering, laughing, and crying. And then you’ll find a young man giving life one more shot even though he had lost belief in medicine, people, promises, treatments … and himself.

  More than that, this book is about journeys, dreams, reality, confusion, love, and trying to find one’s self and our fit in this world. Life presents challenges every day. And sometimes we beg for nothing more than a level playing field.

  Whether you’re an overstressed nine-to-five marketing manager; a healthy, strong construction worker; or a parent who has had to hurdle obstacles, make tough decisions, and seek an answer you just can’t seem to find, allow this book to inspire and bring a happy tear to your eye. It’s filled with the full spectrum of emotions.

  It is my sincere hope that some of the things I’ve shared with you will help guide you in your paths, travels, and adventures—wherever they may take you.

  1

  Where’s My Miracle?

  “Who then can so softly bind up the wound of another as he who has felt the same wound himself?”

  —Thomas Jefferson

  IN THE WINTER of 2004, in the features department of the Kansas City Star, I crawled under my messy, metal desk and began to sob. I didn’t want to die. I just wasn’t sure I had the strength to go on living. It was as if, when I wasn’t looking, someone had reached into my chest and stolen all the hope out of my heart.

  That’s what Tourette Syndrome will do to you.

  For forty years it had been a part of me, an evil puppet master forcing me to shake my head and twist my neck. And one dreary February morning, it simply overwhelmed me. The noises bouncing around the newsroom hit my head like a hammer. I wanted to disappear, to melt into the background. I slouched in my gray office chair and slowly began to sink. I had done this before. All the other times I caught myself and bolted upright. Not this time. I just … kept … going. Sliding off the front cushion of my chair, I plopped onto the coffee-stained carpet squares and pretended to look through some of my old stories that I kept on the floor in cardboard boxes. I liked the darkness and the snug feeling of protection. All of a sudden I was a child again, hiding in a fort, or under a blanket.

  I was safe. But the feeling only lasted so long. In minutes the familiar urges to shake and move came back. I leaned
over, resting my head against a stack of Sunday magazines, and closed my eyes until tears dripped from my short brown goatee. As a feature writer for nearly twenty years I couldn’t count the number of times I had listened to other people pour out their problems—alcohol, drugs, depression, cancer, car accidents, financial ruin. The one constant was that everything always turned out for the best. There was a comfort to the form. The hurting person found a way to survive—even, in many cases, to prosper. I always felt good for them. I really did.

  Except … where was my miracle?

  One day I was just going to snap. And all it would take was three little words.

  “How are you?” someone would ask at just the wrong time, and that would do it. I’d spin them around as they walked past.

  “How am I?” I’d say, breathing a little too hard. “Not very good, thanks. I got two hours’ sleep last night on top of one the night before. I feel like I’m carrying a three-hundred-pound man on my shoulders. My neck is on fire, and being stabbed by a thousand tiny ice picks. I’m so tired I can barely stand up, I can’t remember my computer password, and I couldn’t tell you what I wrote yesterday if you threatened to boil me in oil. My head is shaking, my neck is twisting, my stomach is tightening, and I worry that one of these mornings one of the monstrously hard head shakes I never let you see will finally jar something loose in my brain, and I’ll pitch forward in my oatmeal and that’ll be it for me. But thanks for asking. How are you?”

  But then that would be wrong, wouldn’t it?

  Usually I just say I’m fine.

  Back under my desk I shook my head so hard I banged my dollar-store reading glasses into the side of a metal drawer, mangling them into a shape that no longer fit my face. I took them off and tried to bend the flimsy metal frame back to something resembling straight.

  A plastic lens fell out of the right side and wouldn’t snap back in. Whatever, I thought. It was a perfect metaphor for my life. Bent up and broken, unable to be fixed. That’s what more than forty years of Tourette Syndrome had done to me.