“Oh! Oh! And what about when your tics …”
“And how about when you do this …” I said making my neck motion.
“Yeah!” Jeff said. “Or this,” he said, making a movement of his own.
“I know exactly what you mean!” I’d say. And I did.
It was as if Jeff and I had known each other forever. The conversation was organic and cathartic. He told me about the time he scared a little old lady when he had a particularly violent tic just as the doors opened on an elevator. He told me about the time he dented his dining room wall with his moving head. I hung on every word.
He felt like the brother I never had. But he was so much more. Not only was he someone who had experienced all the tics, travails, and torture of Tourette’s, he was someone who had survived them and broken through to the other side.
I stared at him in disbelief. He wasn’t moving. He wasn’t suffering. 81 He was … well!
“You know, what I told you on the phone was the truth,” I said, looking him in the eye. “As corny as it sounds, you’re my hero.” I fought back a tear. “I never thought something like this was possible. For more than forty years this thing has tortured me—not as badly as it tortured you, but it’s bad enough.”
Jeff saw my tics. He also saw my passion and sensed my integrity. Tourette’s was not just some subject I found interesting. It was the biggest part of me, affecting me in some way in every moment of my life.
Jeff listened to the way I talked about the condition, about my experiences. He saw the look of recognition in my eyes when he talked about his experiences. And he felt my heart when I told him, again, how inspirational his story was, that he was my hero, and that I would be honored to write a book with him.
Jeff thought about how I hadn’t just called him and asked him to write the book, but actually spent my own money to come to see him in Cleveland. That put a checkmark in my column. He told me later that my genuineness, my integrity, and my work ethic reminded him of his father.
Finally the time for talking was done. I wanted Jeff to know what kind of a writer I was.
“I brought some articles that I’ve written so you can get a sense of how I write,” I said. “Would you mind if I read them?”
“No,” Jeff said. “I’d love to hear them.”
I grabbed the article on the top of the pile—a story I had written in the Kansas City Star in the fall of 1993 about the time my daughter, Allison, was born at home on the bed. I read it to Jeff.
“That’s an amazing story, and beautifully written,” Jeff said.
“Thank you,” I said.
“I felt like I was there. And I just can’t believe you did that!”
“Yeah,” I said. “Neither can I.”
“Could I read you another one?”
“Absolutely,” Jeff said. “This is great.”
Jeff loved to hear me read. He told me so. Sharing my personal stories in my own voice meant a lot to him. Later, Jeff shared something even more personal with me.
“You want to see something cool?” he said.
“Sure,” I said.
“Would you mind if I … took off my shirt?” he said, throwing up his hands as if to say, “Nothing weird or anything.”
“No problem,” I said.
Jeff removed his shirt and put his fingers on top of two subtle but noticeable rectangular bulges under the skin on both pecs.
“These are my batteries,” he said. “They power my stimulators. Here, you can feel them.”
I hesitated. It was a bit weird, but then I thought, That’s the miracle. That’s what helped him be normal and to defeat his tics.
I put my hand on the chest bulge and felt the hard battery below. “Does it hurt?”
“No,” he said. “I can’t even feel it. These are connected to a very thin wire that runs up to the stimulators in my brain.”
He turned his head and craned his neck.
“It’s small, but you can see if you look closely.”
I could see the outline of the wire—barely—running up the side of his long neck.
“Wow!” I said. “That is unreal!”
“Isn’t it?”
“That is so cool. And that …”
“Powers the stimulators in my brain that control my tics.”
My mouth just hung open. Seeing it in person, that close up, made shivers run down my spine. Maybe I could have that same surgery one day! Maybe I could get better.
Maybe.
It was almost like adult show-and-tell. I read him my articles; he showed me his batteries and his wires. It was one of the most remarkable moments of my life. In the two hours we had been together he already had become an important friend and partner, the brother I never had, and the hero I always needed.
Near the end of the meeting I thanked Jeff for coming and told him how incredible it was to meet him. Then I pressed my case, listing reasons why I would be the perfect person to write his book. Jeff told me my passion, enthusiasm, humor, storytelling, and personal familiarity with Tourette’s was everything he could have wanted in an author. Still, when I asked him if we could write the book together, he was noncommittal.
“It’s been great talking,” he said. “But as excited as we are, we need to come down from the high we’re on. We’ll talk about this in a couple of days.”
Worried, I asked if there was anyone else who had begun work on the story. He paused, and then looked down.
My heart sank. No!
He already had started working with another author.
I hung my head. I had come all that way, poured my heart out, and bonded with a man with an incredible story only to find out that somebody else was writing the book I was born to write. Sensing my disappointment, Jeff tried to broker a compromise.
“I don’t see any reason there couldn’t be two books,” he said. “The other one is coming from a little different angle, dealing more with the psychological realm. Would you be OK with that?”
“Uh … I guess,” I said, halfheartedly, not wanting to lose my chance at his story. But deep down I knew I’d have to tell Jeff that there could only be one book about his amazing story.
Jeff moved toward the door. Time to go. We shook hands.
At that moment I also knew something else—that I was going to be the one to write it! I had always played fair. I never wanted to hurt people or get something I didn’t deserve. But in this case I had to be competitive. And I wanted to win! I felt badly about being a claim jumper, about causing someone else to lose their dream in order for me to get mine. But this was far too important to me to feel too badly for too long.
I didn’t mind competing. And I thought I could win. Sure, the other author had a head start. But I had an ace in the hole. I had Tourette’s.
Finally I got some good news. The other author had barely started a couple of weeks ago, and Jeff didn’t exactly seem to have an unbreakable relationship with him. In fact, Jeff was still trying to understand and bond with the author, telling him one thing but wondering privately if it was worth continuing. He was a little dry, Jeff later told me. And he didn’t feel that same spark of life that he did with me.
“I can’t wait to get started on the book,” I said. “I have a bazillion questions!”
“I have a bazillion stories,” he said.
His wide smile seemed to say that, one way or another, this book was going to happen.
“Yes!” I vowed. “It will happen.”
After Jeff left, I waited several minutes to make sure he was out of earshot, and then checked the parking lot to make sure. Then, I couldn’t control my excitement any longer. Everything I had been keeping inside of me for more than forty years—all the pain, all my struggles, all my hopes and dreams, came rushing out of me all at once. I began running in circles in the hotel room, exploding with laughter, tears, shouts of joy, and primal screams. I danced on the table, jumped on the dresser, and nearly broke my arm trying to do a backward somersault off the bed fr
om my knees.
It was easily one of the greatest moments of my life. I felt as if I had been reborn, or at least plugged into an electrical outlet. The power surge racing through my body was unlike anything I have ever felt. I had just met the walking embodiment of my wildest dream—living proof that every fear I ever had about never being able to get better was just meaningless bullshit! I didn’t care if they ever did deep brain stimulation on people with less serious cases like mine. Just the fact that they had done it on one person, and it had worked, was more than enough for me. I knew now that my Tourette’s was mortal. It could be stopped.
It could be killed!
It wouldn’t happen overnight. It might never happen. But just knowing that it was possible gave me enough energy to run a mara-thon—or at least around the hotel several times, which I did with a huge grin on my face. Finally winded, I stopped in the parking lot to catch my breath. When I did, I saw a license plate on the back of a cherry-red mustang. It read CELEBR.8.
I looked up in the sky, and pointed. “Try and stop me,” I said.
15
“What Are You, Stupid, Matovic?”
WHEN I GOT home I felt like Superman. Energy radiated from every pore. Usually I was tired and achy. But after talking to Jeff, I felt as if I could lift a Land Rover over my head. Jeff was a hundred times more inspiring in person than he was on TV. There was so much more to his story than even I had realized. And I couldn’t wait to tell it to the world.
It all seemed so right. Jeff and me. The book. A story about a person with Tourette’s written by a person with Tourette’s. How perfect was that?
Still, there was a problem. The other book.
I didn’t want another book. It was the worm in an otherwise perfect apple. After stewing over it for a couple of days, I decided to call Jeff and tell him the hard truth. There could only be one successful book about his story, and he’d have to decide who would write it. It was a risky gambit. All or nothing.
“If you feel your story would be better served with me,” I told Jeff. “I would be honored beyond words. But if you feel like you should stay with the other author, I understand. He’s already started. That’s only fair.”
I meant it. But when I hung up I had a sick feeling that I was a phone call away from losing the biggest opportunity of my life—writing a book about a person who had given my daily struggle a higher purpose. I knew if I let this chance slip away, another like it would not come along. If I ever was going to write a book, this was it. After hanging up I folded my hands and closed my eyes. I had always known the difference between right and wrong, but now I was confused. Both decisions felt “right” to me in different ways.
Help us, I prayed. Guide us to do the right thing—whatever that is.
Two days later Jeff called back. It felt like a month. I picked up the receiver. Worried that he could hear my heart pounding through the phone, I covered the mouthpiece with my hand.
Please, God, I thought.
After a brief greeting there was a pause on the other end. Dead silence for several seconds. And then—“I talked it over with Deb,” Jeff said in a measured voice. “And … we would be honored if you would be the one to write the book.”
I exhaled all the air that I had been holding in my chest in one big blow. “Are you sure?” I said, suddenly breathing hard. “I mean, that’s wonderful … thank you. Umm. Thank you.”
I wanted to scream.
“I’m just so glad to hear that,” I said. “But … I mean—”
“What?” Jeff said.
“What about the other author?” I said. “I kind of feel bad now.”
“Don’t,” he said. “I wasn’t sure that it was working out anyway. I feel much more of a connection with you. And I love your writing. And, hey—I know you understand me.”
I closed my eyes. My dream was coming true. I was going to be an author! I felt energized, focused, alive!
Over the next half hour Jeff and I talked excitedly about our hopes and dreams for the book and made plans for nightly interviews. When I hung up I jumped in the air and pumped my fist, landing with a loud boom on the dining room floor. “Yes!” I shouted.
My father always dreamed of writing a book, but never did—unless you count a short autobiography that he bound himself. He would have been so proud of me. At the same time I had a different emotion that I hadn’t counted on: fear.
This certainly was a great opportunity. It also was a huge responsibility. And now that Jeff had chosen me, I wondered, could I really write a book? I knew I’d need hundreds more hours of interviews if it was going to be any good. I knew we’d need a publishing company. Beyond that I knew nothing. Less than nothing. I didn’t even know what I didn’t know.
“I can learn,” I said under my breath.
I defaulted to what I knew as a reporter—a steady diet of interviewing and transcribing. We began talking after work and on the weekends, slowly peeling back the layers of his fascinating life. I wanted to go quickly. Unfortunately I had Ferrari ambitions with a Yugo motor. After patchy sleep and ticking my way through a full day at work, I could only go so fast.
I had done in-depth interviewing before, but nothing like this. Jeff’s story was deep, like the rabbit hole in Alice in Wonderland. And the more I learned about the story, the deeper the hole went.
ONE OF THE most interesting parts of our first interview concerned Jeff’s years in grade school, when strange movements began to take hold of his body. Plenty of kids teased him, but none did it better than a charming antagonist named Ron.
Jeff met Ron in first grade at St. Bonaventure, a parochial school in Glenshaw, Pennsylvania. Rich, entitled, smart, cool, arrogant, and mean, there was a suave charisma to Ron that attracted followers like a magnet. He was a good seven inches shorter than Jeff, but what he lacked in height he more than made up for in confidence and ego. Ron was a bully and a button pusher, and if he didn’t like you, you became his target.
Not even his teachers were immune. If a teacher stumbled over a word, Ron would be the first to laugh. Even when a teacher would threaten to send him to the office, he wouldn’t break character.
“Yeah,” he’d fire back with a sneer on his face, “like I haven’t done that before!”
Jeff met Ron’s parents once. They were permissive, gave him whatever he wanted, tried to be his best friend. They spoiled him.
Jeff couldn’t have been more different. Polite, kind, and respectful, Jeff would try to make peace with Ron. When insulted or teased, Jeff would try to lighten the mood with a joke, or just leave without making the situation worse.
Ron interpreted Jeff’s good manners as weakness. He didn’t like Jeff. He had found his target.
IT WAS LUNCH TIME at St. Bonaventure grade school. Jeff slid a cafeteria tray along three silver bars that served as a guide rail. The tallest kid in school, he was a big eater. He loaded his tray with a sloppy joe, four cartons of milk, and double helpings of mac and cheese, mashed potatoes and gravy, and chocolate chip cookies. Before Jeff reached the cashier, Ron reached under his tray and poked it from the bottom, causing all his food to spill. Then he pointed at Jeff.
“What are you, stupid, Matovic?” he said. “You have to keep the food on the plate to eat it!” And then everyone in the lunchroom would laugh.
Jeff hated it when he spilled the food on his lunch tray. Sometimes it was because of Ron; other times because his tics. Most days he tried to scoot the tray along, touching it only briefly. As he moved along the line, collecting food, a powerful urge grew in his right arm—the urge to punch hard, straight down. Day after day it built to overwhelming levels until—oh God!—he simply had to punch downward, and he had to do it right then!
Jeff’s long arm fired downward like a backward missile—hard, fast, straight down. As it did, a tremendous clatter echoed through the lunchroom. His rocket arm had clipped the front of his lunch tray on the way down, sending his food—including a plate covered in brown gravy, all over the
front of his carefully pressed white shirt.
Everyone turned to look. Immediately after, he could hear Ron’s derisive voice pierce the uncomfortable silence. “Hey, Matovic!” he called. “Did you bring an extra set of clothes today? Did you bring your diaper?”
Ron burst out laughing. Other times he’d just stand and applaud, or lean back in his chair with a knowing smirk. It was like a private victory for him whenever Jeff’s tics would embarrass him. When Jeff would look over, Ron would just smile and wink. Jeff felt like a big joke. Just another of Ron’s punch lines.
But in another way, Ron motivated Jeff. He made him resolved and focused. Jeff wanted nothing more than to put the charming asshole in his place. And as they grew older, that’s just what he did. One day in 1984, when Jeff was in fifth grade, he had gone out for recess with his best friends, Kevin Keenan, Dan Kenaan, and Pat Rios. Ron and his posse were playing hoops, and Ron was showing off.
A good athlete, Ron hit a few long shots, causing his admirers to say “Wow!” When he saw Jeff, Ron said, “Let me show you something I can do that Matovic could never do.”
Dribbling twice between his legs, Ron did a 360-degree spin and fired up a three-pointer that dropped into the net.
“Ooohhhh!” said his posse.
Ron stared Jeff down with his arms spread wide. “What you got?” he said in a challenging voice.
Dan put his hand on Jeff’s shoulder. “It ain’t even worth it,” he said.
“No,” Jeff said, walking toward Ron. “I need to take care of something. Gimmie the ball!” he said to Ron.
Jeff not only imitated Ron’s move, he dribbled the ball between his legs five times, did two spins and—while fading to his left from a greater distance than from where Ron shot—threw the ball up in a high arc. Perfect swish.
Ron’s friends wore a look of shock as they stared at Jeff.
After retrieving the ball, Jeff forcefully pushed it into Ron’s chest and then walked away.
Kevin, Dan, and Pat had smiles a mile wide. “Holy crap,” Kevin said. “That was incredible! Did you know you could make that?”
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