Ticked

by James A. Fussell

“I guess I’m just full of surprises,” I said, smiling and puffing out my chest as I did a little happy dance in front of her.

  “You’re full of something,” she said, shaking her head and going back inside.

  After I finished shooting I laid the brown package on the top of our oak entertainment center and got a glass of ice water.

  Susan, a longtime Oprah fan, made a beeline for the tape. “OK, it’s later,” she said, slipping it into the VCR.

  “No!” I said, taking it out.

  “You’re not going to watch it?”

  “I want to watch it by myself,” I said. “Later. A lot later.”

  “Why?”

  “It’s just … personal. You know?”

  I stuffed the tape under my shirt and took it down to the basement.

  “Jim?”

  In the furnace room I hid it deep in a cardboard box of painting drop cloths under my workbench.

  “Jim?”

  “Yeah?” I said, jogging back up.

  “I want to see it sometime.”

  “You will,” I said.

  Later that night, an hour after everyone had gone to bed, I sat on the beige carpet in the middle of our darkened family room with a bowl of salted peanuts and a glass of skim milk and slipped the tape into the VCR.

  There are moments that are so powerful you realize in an instant they’re going to change your life. For me, watching the tape of Jeff Matovic was one of those moments. The tape showed Jeff before his surgery, tortured and imprisoned by a horrible case of Tourette’s. I saw him writhe and shake and have trouble completing a simple sentence. I saw him try to walk down a hallway, only to be interrupted by electric spasms that caused him to stop to twitch and shake. Even though my Tourette’s was nowhere near as strong, I understood all too well what he was going through. In the next clip I saw Jeff after his surgery. Then, unbelievably, I saw him walk across the stage with his wife, Debra, to thunderous applause.

  I couldn’t move. I literally sat there with my mouth open.

  “That’s impossible!” I said. “Nobody just beats Tourette Syndrome like that!” And yet, there he was—the man who had done it.

  In that moment I knew that everything I had ever believed about the invincibility of Tourette Syndrome was wrong. It wasn’t permanent! It wasn’t all-powerful! It didn’t have to define or destroy my future!

  I rewound the tape. Then I rewound it again. I copied down Jeff’s name and began to cry. I paused the tape on a close-up of Jeff’s face and scooted in closer to reach out and touch it with a trembling hand. I watched him twitch and jerk, flex, and flail, his body a Gordian knot of spasms. It was awful, but I couldn’t look away. My heart went out to him—and to his family. The things they must have been through! The embarrassment. The frustration. The exhaustion and the pain.

  No one could know the depths of their despair—not even me. But I knew one thing: I’ve interviewed thousands of people, and the more I learned about Jeff Matovic, I knew he was different from all of them. He easily had led the most courageous, awful, and wonderful life I had ever seen.

  It wasn’t long before I knew what I had to do. I had to meet Jeff Matovic. I had to meet—as Oprah called him—the Miracle Man! And at that moment I knew I would. In many ways I had been searching for Jeff my whole life. He represented every crazy, miraculous possibility I ever dreamed might come true. More important, he represented the one thing I thought I’d never have again with my Tourette’s. He represented hope.

  The next day I called Eileen Korey, head of public relations at the hospital where Jeff had his surgery. Lots of people wanted a piece of Jeff after that show. It was Eileen’s job to keep most of them away—or at least that’s how it seemed to me. But after hearing that I had Tourette’s myself, she agreed to give me his number. I wrote it down on a yellow legal pad. I ripped out the page and looked at the numbers. A chill ran up my back. I was about to talk to a man who had triumphed over his Tourette’s, a man I had convinced myself couldn’t exist. And if could just work up the nerve, I was going to fly to Cleveland to meet him and ask him if I could write a book about his life.

  Just the thought of it was exciting, energizing. Although I didn’t know it then, I was holding more than a telephone number in my hands.

  I was holding my future.

  I said a prayer, picked up the receiver, and—with trembling hands—dialed the number.

  “Hello?” Jeff said in a deep voice on the other end of the line.

  “Jeff?” I said, fidgeting and cradling the phone with two hands as if it might break if I dropped it. “This is Jim Fussell from Kansas City. Do you … have a few minutes?”

  “Of course,” Jeff said.

  The voice on the other end of the line—my voice—was breathless, apologetic.

  I spoke quickly in short, choppy sentences. I was a forty-six-year-old professional, but in some ways I must have sounded like a schoolgirl.

  “I—I—I hope I didn’t disturb you,” I stammered.

  “No, it’s fine,” Jeff said. “I was just watching a track meet on TV and eating some nachos. I’ve got the afternoon free.”

  I took a deep breath and blew it out. I told Jeff I was a writer with Tourette Syndrome. I told him about Oprah and the tape and how I couldn’t believe what I had seen. I told him how amazing his story was, and how it had given me hope. And, with trembles of emotion in my voice, I told him that he was my hero.

  “I’ve interviewed presidents, movie stars, billionaires, and Nobel Prize winners. But it would be one of the biggest honors of my life if I could get on a plane and fly to Cleveland to meet you. Would that be OK?”

  “Of course,” he told me.

  Talking to Jeff gave me goose bumps the size of marbles. He was just like me. No. He was better than me. He had not just survived Tourette’s, he had beaten it! To me, he might as well have been a rock star. The only disappointing part of the conversation was the date of our meeting. Because of all the things that were going on in his life, he couldn’t meet with me until late fall.

  I took what I could get.

  In early November 2004, I boarded a plane from Kansas City to Cleveland to meet Jeff for the first time. Because of the extra stress flying puts on my head, it’s not my favorite thing to do—especially if the plane is delayed and I can’t get off and move around.

  Guess what? The plane was delayed and I couldn’t get off and move around.

  I spent as much time as I could in the tiny bathroom. But soon they wanted everyone back in their seats, buckled up and ready to go. I felt like a prisoner. It wasn’t long before my head started to rebel. I felt like a person in a coffin who had just woken up to discover that someone had made a terrible mistake. I wanted to get out of there! I started breathing hard. I closed my eyes hard and said a prayer. The constant madness inside my brain pushing at me, pressuring me to shake and twist and flex, was indescribable. I tried to fight it by counting to a thousand and doing deep breathing exercises.

  It helped—at least for a while.

  Soon I couldn’t fight anymore. For me, holding back a shake is like holding back an eye blink. I don’t care how much willpower you have, eventually it’s just going to happen.

  An hour into the delay my head started shaking—a lot. And I don’t know if someone complained, but shortly thereafter a middle-aged flight attendant with bottle-blonde hair, a leathery tan, and a chest that looked as if it had been inflated with a gas station air hose walked up to me.

  “Sir?” she said in a syrupy sweet tone.

  “Yes?” I said.

  “Is there anything I can do for you to make you more … comfortable?”

  “No, but thanks for asking,” I said, wrenching my neck hard, then grabbing it with my hand.

  “Because if there’s any way we could help you feel more relaxed, we would want to do that.”

  “I’m afraid I’m about as relaxed as I get,” I said.

  She looked at me again as I fought back a wave of tensio
n, then snapped my head to the left.

  “Oh, you mean my head shaking?” I said. “I’ve got something called Tourette Syndrome.”

  “Whatever you have, we just need you to stop it before we get under way,” she said.

  Whatever I have? Oh this was going to be interesting.

  “Uhh … I’ll try my best,” I said. “But I’m afraid it doesn’t work that way.”

  “What can we do to help you?”

  “You could take off,” I said.

  “We have a pillow,” she said sweetly, reaching for an unimpressive white lump.

  “I really don’t need a pil—”

  She handed it to me.

  “Yeah. OK. Thanks.”

  “Is there anything else we can do to help you keep perfectly still?” she asked.

  I looked at the cheap pillow, then threw it in the seat next to me.

  “That depends,” I said. “Do you have magical powers?”

  “Do I have what, sir?”

  “You know, can you perform miracles? Turn water to wine? That sort of stuff.”

  “Excuse me?”

  “You wouldn’t happen to offer in-flight massages in coach, would you?”

  “I’m afraid not, sir.”

  “Then I think we’re pretty much stuck with where I’m at comfort-wise. But thanks for asking.”

  The flight took a couple of hours. It seemed more like a week. I didn’t care.

  Jeff was worth it.

  14

  I Have a Bazillion Questions

  THERE WAS NOTHING particularly memorable about my Cleveland motel. Across the street from a busy strip mall, it could have been in any one of a hundred cities. But to me it was the most beautiful place I had ever seen. This was where I was going to meet Jeff. And I couldn’t help but feel good as I walked through the door.

  “Lu-cyyyy,” I bellowed, setting down my large blue suitcase and spreading my arms wide. “I’m ho-ome!”

  I smiled at my own joke. I was such a dork.

  I closed the door and a surge of nervous energy shot from my stomach through my upper chest. I blinked three times, tensed the muscles in my neck, then shook my head left and right four times in a row. I was so excited that I was finally going to meet Jeff. Maybe too excited.

  I couldn’t wait to tell him I was in town. Sitting down in front of a mirror, I watched myself pick up the phone, then put it down. I stared at Jeff’s number, handwritten in one of my white reporter’s notebooks. I drew circles around the number, then doodled smaller circles around that. I grabbed the phone again, then put it down. Grabbed it. Put it down. I tapped my pen, popped my knuckles, then began picking at the edge of the wooden desk where the veneer had begun to peel away.

  I took a breath and grabbed the phone again.

  “You can do this,” I said.

  I set the phone back in its cradle. The adrenaline took one more lap around my chest, causing me to walk restively around the room. I realized what was about to happen. And for the first time it frightened me.

  Who did I think I was? Was I really going to tell Jeff Matovic I wanted to write his book? He had just been on Oprah and Good Morning America. He could get anyone to tell his story! Besides, I didn’t know the first thing about writing a book.

  “Shut up!” I said out loud, trying to stop the nervous thoughts. I was a writer. A good writer. And I had one thing that all those other writers didn’t.

  “You might actually come in handy for once,” I said, talking to my Tourette’s. Digging into my black laptop briefcase I pulled out a story I had written in 1990 for Star Magazine, the Sunday magazine of the Kansas City Star, about my own Tourette’s. I read a passage.

  There is no cure for Tourette Syndrome, but some drugs can lessen the severity of its symptoms. Researchers believe that Tourette’s is genetic, and there is evidence it runs in families, although not in mine. In the Middle Ages such tics were seen as a sign of demonic possession. When exorcism failed to drive the spirits from the body, people were burned as witches.

  Today people just make fun of you.

  “Hey you!” a scruffy high school student yelled at me once. “Are you a spazmeister or what?”

  “No,” I said. “I’m a reporter for the Kansas City Star.”

  He flipped me his middle finger, jerked his head backward, and wiggled his body in mock contortions.

  “I have Tourette Syndrome,” I said. “It’s a medical condition.”

  He ran off, getting high fives from his buddies. I got into my car and considered running him over.

  I hate people sometimes.

  And I hate having Tourette Syndrome.

  I was ready. I picked up the phone and dialed Jeff’s number.

  When he answered I told him I had arrived, and excitedly asked when I could swing by his place. He seemed hesitant, cautious. After a while I got the feeling he didn’t want me at his house at all.

  Uh-oh. Had I scared him? Was he having second thoughts about talking to me?

  Finally he proposed an alternative. He’d come to my motel—on Wednesday.

  It was Monday.

  Two days? I thought. But I’ve come all this way. I want to see you now!

  “Uh, sure,” I said. “Wednesday would be fine.”

  And it would, I told myself. I had the room for three days, and I needed to talk to his doctors anyway. With nothing else to do that day I crawled into bed to rest my head. Stressed from the flight, I fell into a deep sleep for what seemed like the first time in a month.

  I awoke past 9:00 PM to a gurgling stomach. In all the excitement I had forgotten to eat. I drove across a busy street into a strip mall, where I ordered a large beef sandwich from a neighborhood pub and took it back to my room.

  Sitting on the bed with the white Styrofoam takeout container in my lap, I turned on the TV to a nice surprise: my favorite team, the Philadelphia Eagles, were playing their hated rivals the Dallas Cowboys on Monday Night Football. And they were winning. Big.

  I took that as a good sign as I cheered and ran around the room. As I finished off the sandwich, the Eagles finished off the Cowboys 49-21.

  “Maybe this is going to work out after all,” I said to myself.

  ACROSS TOWN, JEFF wasn’t so sure. He didn’t know me. And while he wanted to believe I was the right person to write his book, that was far from guaranteed.

  More than anything, he was tired. Tired of the excitement and the shows and the white-hot media blitz. He was tired of the opportunists and the glad-handers and the people who were using him for their own purposes. He longed for someone who could truly understand him.

  Late Wednesday afternoon he tried to relax before making the nervous twenty-minute drive to my motel. And there was nothing that relaxed him more than listening to his favorite comedian, Jeff Foxworthy.

  He popped in a DVD and flopped on the couch. He knew each joke by heart. Like a good friend, they never got old. There was something about Foxworthy’s singsong Southern drawl that got Jeff every time.

  Jeff looked at the screen. A smiling Foxworthy was in the middle of his famous “You Might Be a Redneck” routine, and the audience was roaring.

  “If you’ve been married three times and still have the same in-laws,” Foxworthy said. “You might be a redneck.”

  Stretched out on his back, Jeff couldn’t help but smile.

  Half an hour later he was dressed and ready to walk out the door.

  “How do I look?” he asked his wife.

  “Very handsome,” she said.

  “Thanks,” he said, smiling and giving her a kiss. “You’re not so bad yourself.” He started out the door, then stopped. The smile was gone.

  “What is it, babe?” Debra asked.

  Jeff looked back at his wife. “I just hope he’s someone I can hit it off with and really talk to,” he said. “I know this could be a great book. But I need someone who really understands me, and also understands the condition.”

  Debra gave him an “I know”
with her eyes.

  “Say a prayer for me,” Jeff said. “It’s not often you meet someone with Tourette’s, let alone a guy not much older than I am who just happens to be a feature writer for a large newspaper.”

  “I’m sure you two will hit it off just fine,” Debra said.

  As he drove through familiar streets he played the radio loudly, tapping wildly on the steering wheel to the driving rock beat. When he arrived, he turned off the engine but didn’t get out of the car. He took a big breath, closed his eyes, and offered a prayer.

  “God,” he said, “let this be the person I need.”

  BACK AT THE motel I grew nervous as the minutes to our meeting ticked down.

  Twenty minutes before Jeff arrived, I carefully laid out on the desk all the stories I had brought to share with him. I set them out as if in a display.

  No. Trying too hard, I thought, quickly putting them back in a pile. I combed my hair, practiced various greetings in front of the mirror, and changed clothes three times.

  He had to like me, he just had to. He had to know how much he had inspired me and given me hope. He had to understand why I was the perfect one to write a book about his life, and why no one could care more. What words could I use to convince him? I knelt in front of the king-sized bed and bowed my head. Five minutes later the knock at the door might as well have been the beating of my heart.

  I opened it to reveal a tall man with black hair wearing a large and friendly smile. Looking exactly as he had on TV, he extended his hand.

  “Jeff Matovic,” he said with a huge grin.

  “I recognize you from the tape,” I said. “Jim Fussell. Come on in and sit down.”

  I sat at the desk. Jeff, dressed in a green polo, khaki shorts, and brown sandals, sat across from me on the edge of the bed.

  I liked him immediately. He was funny, smart, and kind. And it didn’t take long to figure out that we had faced the same demons. We finished each other’s sentences and fit like puzzle pieces. My eyes lit up every time I heard him say something about his life that paralleled something in mine. We began to laugh, trade stories, and excitedly interrupt each other.

  “Have you ever been in the situation where …”