Jeff then glanced at Maciunas and Maddux and flashed them a smile. He had never seen two doctors more speechless in his life. He kept waiting for a tic or a twitch. It never came.
He was normal. Normal! It was everything he had been praying for. After handshakes, hugs, and tearful thank-yous, Jeff walked back to the car beside his father without a single tic. No movements! No sounds! No grunting! No fist punching!
When they reached the elevator in the parking garage, they stopped. Then, in the echoing silence, they turned and looked at each other with a similar thought. “Let’s take the stairs!” they said together, suddenly realizing that Jeff could. Such a little thing. But it was everything.
From that day forward, Jim Matovic would always think of March 4 as the day his son “marched forth” into a new life.
43
“Welcome Back to Your Life”
THEY COULDN’T WAIT to share the news. Jeff had been healed! Not just helped, healed! As in no more grunting, no more punching, no more head shaking or eye blinking. No more tics of any kind!
Doctors were careful not to use the word cured. The tics were still there, they said. They were just being controlled by the stimulators.
Who cares? Jeff thought. For him it was the same thing. For the first time in more than three decades he could relax!
As Jim Matovic drove his son home he called his wife, Patty, on his cell phone. But when she answered, he couldn’t speak.
“Hello?” Patty Matovic said. “Hello?”
Jim handed the phone to Jeff, who told his mother the news. “Mom,” he said. “It worked.”
He heard screams through the phone. “Oh, Jeffrey,” she said. “That’s wonderful news! I just can’t believe it! It worked?”
“It worked, Mom. All my tics are gone!”
Her prayers had been answered. Her son was all better. No more tics! No more pain or suffering! But it still seemed so unreal. She couldn’t wait to see him for herself.
A few minutes later, Jeff’s father called Debra. She had been waiting all day for news, had even eaten lunch at her desk. If she hadn’t exhausted all of her vacation days, she would have been there with Jeff herself. But she didn’t dare ask for another day or risk getting caught calling in sick. Besides, doctors had cautioned them that they would likely have to come back several times for numerous adjustments and not to expect anything to happen at the first appointment.
Debra grabbed the phone on its first ring, only to hear her father-in-law sobbing on the other end. For a moment her entire world went dark. Oh God, she thought, it hasn’t gone well!
But then—what was that?—she heard laughing over the crying. “What’s going on here?” she said. “Dad. Tell me. What’s happened?”
“Deb,” Jeff’s father said. “Deb, it worked!”
“Huh?” Debra said, perking up. “How much? Tell me what percentage we’re at here. What’s still going?”
“I’m going to put Jeff on. He’ll tell you.”
“HONEY!” Jeff shouted excitedly into the phone. “I have no tics! I haven’t ticked once since whatever time we started!”
“Are you joking?” Debra said, excited, but aware that Jeff was famous for his practical jokes. “You’re not pulling my leg here?”
“No, I’m not,” Jeff said. “You know I wouldn’t joke about this!” Deb’s mouth hung open. Best-case scenario, she had thought, maybe—if they were lucky—he’d see a 50 percent reduction. And now he was telling her it was 100 percent? No more tics? Not one? It was literally the best moment in her life.
She stood up and screamed into the phone. “Oh my God!” she hollered. “Oh my God! It worked! It worked!” Her coworkers began streaming out of their offices. Debra was nearly hyperventilating.
It was everything Debra could have wanted. She couldn’t believe it. “It worked?” she asked again.
“It worked,” Jeff said. “And it’s fantastic!”
“Oh, I love you so much!” she said. “I’m so happy for you, and I can’t wait to see you!”
They spoke for several minutes before Jeff had to end the call.
“We’re going to go get some lunch now,” he said. “We haven’t had anything to eat.”
“OK,” Debra said, still vibrating with excitement. “OK, you go do that, and I’ll see you at home.”
She couldn’t wait till the end of the day.
Jeff and his father, still reeling from the events at the hospital, stopped to pick up some hamburgers from Burger King, then continued their drive to Jeff’s house. They drove in silence. No music. Not even much talking. Jeff was having too much fun looking out the window, looking at houses and trees, and trying to orient himself to this new world he was seeing. Nothing was shaking. His world was unusually still. He reached out with a steady hand and felt the air. This is wonderful, he thought.
Jim Matovic thought the same thing. But he couldn’t help but be wary. As he drove, he glanced at his son every several seconds to check for a shake, a twitch, something.
There was nothing. He wanted to be giddy. But questions gnawed at him. Would Jeff’s stillness last an hour? A week? Or was it—he almost didn’t want to say it out loud for fear of jinxing it—permanent?
No one knew, not even his doctors.
When they arrived back at Jeff’s house, they made one more call—to Jeff’s brother. Steve, an engineer, worked as a manager at a gear manufacturing company. He took the call in his office.
“Uh, Steve,” Jeff said laughing and yelling into the phone at the same time. “It worked! It worked!”
“What’s that?” Steve said, trying to hear over the noise. He shut his office door. “What? What’s going on? Where are you right now?”
“I’m at my place, and I’m not ticking,” Jeff said. “I haven’t ticked for hours.”
“Your whole body?” Steve said.
“Yeah!”
Jeff heard Steve call to his boss in a loud voice. “Jim,” he said, “I’m going to be gone the rest of the day.” Then he addressed Jeff again. “I’ll be over in a minute,” he said. “This is wonderful! I can’t wait to see you.”
When Steve arrived at Jeff’s house, he hesitated for a moment when he saw Jeff standing still beside their father in the dining room. He walked quickly across the floor toward him, walking faster the closer he got. With tears streaming down his face, he grabbed Jeff and held him in a tight embrace. He didn’t let go for several minutes. He just rocked back and forth, patting him on the back. Jeff started to cry.
“Welcome back, Jeff,” Steve said. “Welcome back to your life!”
One by one the people in Jeff’s life began showing up for the celebration. As friends and family looked at him, they held their breath. It was as if he were fragile, and they didn’t want to be the one to “break” him.
Deb got to go home an hour and a half after getting the news. She drove home as fast as she could. When she finally walked in the door, she saw Jeff’s father and brother, both with huge grins on their faces. Then she looked at Jeff, and he looked back at her. It was incredible! Finally, the man she had always seen on the inside was standing there the way she had always pictured him in her mind. The gleam in his eyes, the smile on his face. And it wasn’t just her who could see it anymore. It was everyone. Everyone could see it!
They didn’t say a word as, for a moment, the world stood still. Crying, she walked up to him and got lost in his huge embrace.
Later that night, after the celebrating was over and everyone had gone home, Jeff enjoyed his newfound stillness on the basketball court in his driveway. It was so amazing just to be able to hold the ball without ticking. In the dim of the evening he stood at the free-throw line for the longest time just bouncing the ball. He stood there, alone in the driveway, for ten minutes without taking a single shot.
“Well look at me,” he said to himself. “I’m holding the ball.”
The little things were everything. Holding a ball. Grabbing a tissue and blowing his nose.
Getting an actual glass out of the cupboard instead of a sippy cup! Every experience, no matter how small, was a brand-new miracle.
Days went by. Then weeks. No tics. Not one.
Aunt Suzie, Jeff’s cousin Kelly, and his grandmother came to visit.
“Just look at him!” Deb said, showing Jeff off like a new car.
Finally, after weeks went by with no regression, they decided to celebrate. They took the kids and went to Applebee’s for dinner.
For the first time since she had met him, Debra was able to go to a restaurant with Jeff without having anyone stare or point. She watched in amazement as he cut up his steak without silverware flying everywhere! He had never been more proud. Suddenly he wanted to do everything!
“Let’s go to the mall!” Jeff said. “Let’s go to the movies! I want to see the most action-packed movie you can find!”
Days later he returned to St. Francis Chapel. The building was empty. His eyes never left the crucifix as he prayed out loud. “I can’t thank you enough, God,” he said. “My life has changed because of the blessings that you have provided me in terms of the people, the support, and the technology—down to the last janitor at Medtronic.”
He thanked God for a multitude of new blessings and for his new life. He knelt before the altar and bent down low as he gently kissed the top step. Before he left, he stopped to turn back the pages in the prayer book to the original prayer he had written in it. It read: “God, please let this surgery work.”
Jeff’s lip trembled as he put a check mark by it. Then he took a pen and wrote one more note in the book. It read, simply, “Thanks so much.”
44
Telling the World
IF JEFF DIDN’T know what a media circus was before the operation, it didn’t take long for him to find out. About a month after doctors turned on his stimulators, University Hospitals held a news conference to tell the world. Several dozen reporters and cameramen gathered at the hospital.
An administrator showed a video of Jeff’s journey. Then she introduced the guests of honor.
Dr. Robert Maciunas spoke first. “What’s especially thrilling to us at the University Hospitals of Cleveland and our Movement Disorders Center is that, in this case, Jeff Matovic’s leap of faith has the potential for becoming a great step forward for selected patients with Tourette Syndrome,” he said. “In February he underwent that surgery—went through it successfully—and this little pacemaker was then activated in March with the results that you’ve seen both on the videotape and by Jeffrey Matovic walking in here and sitting calmly in that chair.”
Later in the news conference, he praised Jeff’s courage. “It’s one thing for me, as a surgeon with experience in deep brain stimulator surgery … to feel confident that something makes sense neurologically, and that something could be predicted to work,” he said. “It’s quite another … for a young man to lie down upon an operating table and say ‘Let’s do this’ with all the hope in the world. I couldn’t have expected more from a patient like Jeff…. We’re thrilled! … Jeff has had a spectacular result.”
Dr. David Riley, chair of the hospital’s Movement Disorders Center, then told the crowd what Jeff’s operation meant to him. “I have the excitement of knowing that I have another tool … to work against this disorder [with] people who do have severe enough symptoms to be treated [with DBS].”
During her talk, Dr. Tina Whitney described the excitement of turning on Jeff’s stimulators. “As I am adjusting the stimulator, I am observing Jeff,” she said. “I am looking to see if his tics are decreasing in frequency or intensity, or if he is experiencing any adverse effects from the stimulation. After about two hours of adjusting the stimulator…. Wow! I don’t know what else to say but wow! The outcome of that day was beyond any of our expectations. For the first time in years Jeff was sitting still. He was able to drink from a glass of water without spilling. He could hold a piece of paper and read it without losing his place. He was able to walk normally, and he was sitting calmly. I look at Jeff, and he’s got a grin from ear to ear. I look at dad. Dad’s tearful. I’m tearful. I mean, it was really an incredibly emotional day for all of us…. I want to thank Jeff for his courage, and for putting his trust in us.”
Then it was Jeff’s turn. He walked calmly and confidently to the podium as the clicking of dozens of camera shutters echoed through the room.
“Good morning, everyone,” he said. “First of all I want to send a great, huge thank-you to my family: my wife, Debra; my kids, who are not here; and my parents, Jim and Patty Matovic; my brother, Steve; his wife, Lisa. It’s been a long, long time. But this is truly the day of my life in terms of where I hoped to go for so long. So for all those doctor’s appointments, visits, and whatnot, I can’t say enough thanks. A special thanks to University Hospital’s surgical team, especially Dr. Maciunas and Dr. Maddux, Dr. Whitney, and all the people who helped out to make this such a successful thing.
“I remember [as] a child being very different…. So many people in this world strive to be extraordinary. What I wanted to do was be like everybody else.”
He talked about what he treasured most in his new life. “The simple things in life that I took for granted,” he said. “I can pick up this glass of water and hold it and drink it. I can walk with it, and do so many things that before were just figments of my imagination…. And managing my own goals and strengths without the need for wondering what the outcome will be…. I certainly want to be a friend and an advocate for anyone out there, any families that are struggling, looking for some sign of hope, some sign of courage, and the opportunity to find strength.”
His family spoke next, starting with his mother. “Well, what a day!” a smiling Patty Matovic said. She talked briefly about Jeff’s childhood, then addressed his struggles as he grew up. “It was a difficult time for him in that there were moments when I am sure that he lost hope,” she said. “And what I’d like to say is to tell Jeff how proud of him his family is. We watched it happen. He lived it. We could tell that there were times when Jeff thought, What is living all about? Maybe it would be easier if I weren’t. Those were very dark days. The strength that Jeff displayed during this time allowed him to make many friends, it allowed him to excel in sports, it allowed him to graduate from college. It was this same strength in his faith in God that allowed him to go to that operating room. He fought for February 9, 2004…. And Jeff is truly our hero.”
Jeff’s father then had his turn. “I think Tina said it best,” he said. “Just wow! I was there when Jeff got turned on. And when chins dropped down to about here—enough said. I guess I get to say some thanks too. But how does one really say thank you for a miracle? I can think of my dad, and he would just tell me, ‘Keep it simple and say it from the heart.’ But thank you just doesn’t seem adequate. Thank you. They’re simple words. Know that they come from the deepest part of our hearts.”
He thanked God “who orchestrated this entire journey,” his family and friends “who were there during the hard times to give us a shoulder to lean on, or to cry on,” and the people in prayer groups whose prayers “were heard loud and clear.”
“And the surgical team,” he said. “Dr. Maciunas and his group. What can we say to them? Yes, it was a chance, and it was risky on both sides. But, I think, there’s only one word that comes to my head when I look at and think about the results that they produced, and it’s one of Jeff’s favorite words: awesome! That fits, and I think that’s the only one that really does fit. Something that will always remain with me as an indelible memory occurred when our son, Steve, saw Jeff for the first time after the batteries were turned on and very simply told him ‘Welcome back, Jeff. Welcome back.’”
Steve stepped to the microphone. “Welcome back was probably the right thing to say because he was a whole new person,” he said. “I’d say for the last ten years I haven’t seen Jeff the way I saw him when he got back from the doctor’s office. And it was awesome…. The reason, I think, that Jeff’s favo
rite word is awesome is because he truly is. There’s a strength that I never knew he had. And it took that kind of strength to get through everything that he got through over the past ten years. He’s taught me a lot about what it means to be strong. He’s taught our family what it means to be faithful. And I think he’s going to be a wonderful example for other people who suffer from Tourette’s. There’s not much else to say. It’s just wonderful to have him back.”
Then Debra joined Jeff at the podium for questions. A female reporter asked him how his new life felt. “I’m still getting used to walking around the house and instead of getting the plastic cup with the sipper lid, I am able to grab a glass. I am able to … groom myself, and those sorts of things.”
“What’s it been like for Bonnie and Michael? “
“The one thing that they’ve commented on is ‘Gee, Dad’s pretty still,’” Jeff said. “The other thing is they kind of miss me bumping ’em when I am ticking, or throwing things around. They think that’s kind of neat. But … they have certainly been very, very responsive and very happy and encouraging.”
“Can you describe what your first steps were like?”
“I don’t think I can even use my own word—awesome—to describe what that was like. I think the best analogy was when Tina turned the left side of my body on, which is the right stimulator in my brain, I was walking down the hallway as Dr. Maddux was there and Tina, and [my left side] is just walking smoothly, calm as anything, and this side’s still ticking. So, it was basically like you had two different vertical people put together, which was pretty interesting. In terms of what I feel now, I’m getting used to it. I’m enjoying it, and certainly going from there.”
“Is there anything you can’t do because you have electrodes in your head? Can you… not go through metal detectors?”
“I have to be a little more careful at the airports,” Jeff said. “Fortunately I have cards that I carry with me that I can display to anyone who would want to run a scan over my body. The other thing I have been provided with is my own remote control, if you will. It’s about the size of a small television remote control. I have the ability to turn my batteries on and off. I usually don’t touch those buttons—unless I go to a store and their theft deterrent system turns my batteries off … I can reactivate them.”
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