Desperate not to be seen as weird, he did his best to disguise his tics, or at least delay them until he could run to the bathroom and let them out in whirlwind of uncontrollable thrashing. Letting them out felt great. Everything else felt like torture.
In high school or at the mall, no one tied his shoelaces more than Jeff. There was a reason. Sometimes, when he knew a powerful tic was coming, he would kneel and pretend to tie his shoelaces, then go into a protective turtle shell. While on one knee he would wrap his arms around his legs, lower his head, and squeeze his body together with all his strength. When the tic passed, he’d get up and go on his way.
But tics weren’t his only demons. He also struggled with obsessive-compulsive disorder. It was Tourette’s evil little friend. And, like his Tourette’s, it only grew stronger through high school. OCD made Jeff concerned with such things as right-angle symmetry and midpoints. Everything had to be just so, or he would feel extremely uncomfortable. He had to have his schoolbooks on the upper-left-hand corner of the desk. They had to be stacked perfectly, with the biggest book on the bottom and the smallest on top. Sometimes a classmate would jostle his books or knock them to the floor to be funny. That drove Jeff crazy. He would immediately scramble to pick them up and carefully arrange them perfectly again on the upper-left corner of his desk.
Jeff’s OCD did come with certain advantages. To keep from being driven crazy he had to be dressed perfectly and keep a meticulously clean and organized room. But mostly his obsessiveness caused problems—especially with schoolwork.
When he read a sentence he would have to read it over again—sometimes three or four times. Combined with his motor and vocal tics, that made homework a nightmare. Often it would take him three hours to read five pages. And sometimes a violent arm tic would cause him to rip one of those pages out of a book.
Despite the difficulty, he still got As in his classes. Jeff resented some of his lazier classmates who didn’t know how good they had it. When a few complained about a hefty reading and writing assignment due by the end of the week, he just laughed.
You know what, you assholes? he thought. At least you can read the book. It takes me about an hour a page. And I’m going to get it in on time, and get an A on it. You try doing that!
For Jeff, fitting in at school took awhile.
But he wasn’t alone. Family, friends, and classmates helped him cope. They’d read into a Dictaphone so he could hear his homework. In biology class a girl named Shannon turned the pages for him.
His guidance counselor, Miss Revnyak, was a godsend, talking him through tough times, reducing his stress, and helping him believe in his potential.
Then there was his new doctor. A world-class neurologist at the Cleveland Clinic named Gerald Erenberg took Jeff off the old medication that made him sleepy and put him on Klonopin and Orap, which helped control his tics without the sleepiness.
Erenberg was the opposite of Jeff’s previous doctor. At their first meeting he smiled, put two hands on Jeff’s shoulders, and looked him straight in the eye.
“We’re going to do the best we can,” he said. “And we’re going to get you through this.” He told Jeff that having Tourette’s was neither his fault nor anything he could control. What’s more, he helped him see that telling teachers and others that he had Tourette’s would not worsen his life but drastically improve it.
In time Jeff learned that this was true. He learned to talk about his condition and even advocate for himself with teachers. One of the things he spoke to them about was his scribbled handwriting on tests.
“Obviously you are aware of my condition,” he said. “If you can’t read something, please ask me and I will read it to you.”
His teachers agreed. One tracked him down once at lunch and said, “Do you have ten minutes? I’d like to review this with you.” After Jeff deciphered his scrawl, his teacher smiled.
“Cool,” she said. “Thanks.”
With much of his stress relieved, his natural intelligence took over. Jeff got straight As on his report card. At the end of his sophomore year of high school he was eight for eight for the honor roll. Despite his difficulties, he was doing it. He was succeeding.
He began to think about college, even getting scholarships. And all he wanted to do was to go back to Glenshaw, stand in front of his old neurologist, and rub his good grades in the doctor’s nose.
With the new medication helping to reduce his tics and teachers now understanding his condition, Jeff became more confident. He made friends, got a job at a nature center, and went on dates.
But the action that brought him the most acceptance happened in ninth grade. Jeff had just finished his lunch in the cafeteria and was walking toward a drinking fountain in the hall when a pretty girl named Vicki Weigle walked up to him with a huge smile on her face. Ticking, Jeff feared the worst.
Oh god! he thought. Here comes another person I don’t know who’s probably going to say something about my Tourette’s.
Nope.
“Hi, I’m Vicki,” she said with a huge smile. “You’re Jeff, right?”
“Yeah,” Jeff said warily, wondering when she was going to start making fun of him.
“You just moved to our school, right?”
“Yeah.”
“Well, it’s great to have you at our school,” she said, extending her hand. “Welcome here!” She handed him a green flyer, then invited him to Young Life, a Christian youth social organization. “We talk about scripture and prayer, our relationship with God, and we do a lot of fun activities,” she said. “We even do ice-breaking events for people like you.”
That got his attention.
“There’s no obligation,” she said. “If you’d like to join us there’s a meeting tonight.” She smiled again. “If you have any questions about Young Life, or any questions about teachers or finding your way around the building, just let me know.”
Jeff was shocked. And for the first time he looked a stranger in the eyes and smiled himself. He thanked her and looked at the flyer. “Vicki, I really appreciate this,” he said. Then he walked to a pay phone and called his mother.
“Mom,” he said. “I just met this really cool girl named Vicki, and she told me about Young Life. And I think I’d like to go.”
18
Come on, Jesus. Time to Spill Corn Flakes
RELIGION HAD ALWAYS been confusing for Jeff. Raised in the Catholic church, he believed in God. He loved God. It’s just that there were times he really wanted to punch him in the nose.
Was God helping him, or torturing him? Did he care about him, or had he forsaken him? If it was possible to be a person who deeply believed in God and deeply did not believe in God, Jeff was that person.
His family was very Catholic. His Grandpa Matovic, whom he visited most summers in Greenville, Pennsylvania, had done much of the carpentry work for St. Michael’s Catholic Church in that town. When Jeff went to church there he sat between his father and grandfather, often running his hands along the smooth wooden pews thinking Grandpa made this!
But as he grew, Jeff’s attachment to the church waned. As a boy at St. Bonaventure back in Glenshaw, he went to regular confessions. After his diagnosis, he confessed to fear and confusion regarding the loving God he always heard about in church.
“I’m scared to death,” he told the priest at St. Bonnie’s. “Father, why is God doing this to me? And with all I’m trying to deal with, why doesn’t he help me out a little bit?”
“Jeff,” Father Ed replied, “things happen for a reason. And God will watch over you and protect you.”
Jeff smiled and nodded his head as if he understood.
He didn’t.
Did they teach you that line in seminary? he thought. What a waste of time!
By the time Jeff became a teenager, he was angry at God. To him, Mass was little more than a stage play filled with empty platitudes. Every week he heard the same two things: Jesus loved him and would walk the hard and lonely road with him.
And God had a plan for his life.
God has a plan for my life? he thought. What’s his plan? To ruin it?
And just where was Jesus when he was suffering? He couldn’t help thinking the whole thing was one giant, religious-sounding load of crap.
Still, when he was suffering, he would kneel and pray—for help, for hope, for a miracle. As a teenager Jeff went to church only because his parents insisted. At St. Ladislas Parish in Westlake, Ohio, they sat as close to the front as possible—sometimes in the first row—where Jeff, who couldn’t keep still, felt a thousand eyes boring into the back of his skull.
He could just imagine what the parishioners must have thought of the twitchin’ teen, the front-row freak, the Sunday spectacle. Too often Mass was fearful, frightening, and embarrassing. He really couldn’t get anything out of it because all his energy was directed toward trying to stop the tics. He found that he got more out of praying in the woods or reflecting when running.
Jeff would have done anything not to tic at Mass. He said prayers, counted to a thousand, and took long, deep breaths. It didn’t work. One time, as the priest finished the homily by saying “And may God continue to bless you,” Jeff’s right arm flew out in an uncontrollable jerk, ripping a page out of the mass hymnal in the middle of a dead silence.
Everyone turned to look at Jeff—even the priest.
When everyone sat down, Steve leaned over and whispered, “That was a shitty song. We didn’t need that one anyway.” Jeff couldn’t help but laugh just a little.
Oh, that was it. He was going to hell for sure!
But too many other times it just wasn’t funny. Monday mornings, as an eighth grader, he’d wake up and begin to tic before his feet hit the floor. It was winter in Cleveland—cold, gray, and depressing. He hated winter. As he’d lie in bed he’d think about the homily the priest had given the day before, and the Jesus who was never there.
The sarcasm came naturally to the smart thirteen-year-old with a 105 body full of pain.
“OK, Jesus,” he’d say. “You can come out of the closet now! Time to face the day together, just like you said. Come on, Jesus! Time to go spill Corn Flakes on my crisp, white shirt that my OCD made me iron for two hours last night. Then let’s go to the bus stop and get made fun of while waiting for the bus. Then let’s get on the bus, Jesus. Oh, but we can’t sit by the pretty girls. We’ve got to sit in the back, over the wheel, where we can feel every bump as we tic and twitch all the way to school. But at least I know you’ll sit with me, Jesus, cause you luuuv me.”
Sometimes he questioned God. “Why are you doing this to me?” he’d say out loud. “I’m doing what you tell me to do on Sundays, and I’m doing the best I can. I’m being honest, I feel I’m a giving person, a loving person. Why do you keep giving me this? And why do other people have it so easy? Why don’t you distribute it a little bit?”
He thought especially about his older brother. While he loved Steve and came to rely on him in so many ways, he also began to resent him and envy all he had. Steve seemed to be God’s favorite. He was the golden boy who could do no wrong and had life so easy.
Worse, he seemed to get double blessings from God. Double the love! The double the protection!
Where’s mine? Jeff wondered.
Jeff’s parents not only understood Jeff’s anger at God, they encouraged him to express it. They told him he’d only know if he had a true relationship with the Lord if it changed. Besides, they told him, it was only natural to get angry with God sometimes.
But even they couldn’t have known just how angry Jeff was becoming. It wasn’t long before they found out.
EXHAUSTED, JEFF BOARDED the bus one day after school, slung his backpack onto a seat, and sat down next to it. This had been the king of crappy days. His tics. The teasing. His teachers. He didn’t know what he’d do if one more thing went wrong.
And then it did.
“Hey, dude,” a student said in a nerdy voice that sounded like it belonged in a Saturday morning cartoon. “Wanna try somma this?”
Jeff looked up to see an overweight kid with saggy jeans, greasy black hair, and killer BO extending a small, flat, round container. The brown stuff inside was slimy and disgusting—and it smelled. Jeff looked at the green tin of Skoal with the kind of pruny face a ten-year-old reserves for a piece of liver. Seething, he backslapped the container out of the boy’s hand and then pressed his head against the boy’s brow.
“Listen, you asshole,” Jeff said. “If you don’t get the fuck out of my face right now you and your Skoal are going out this bus window. Do you understand me?”
The boy backed up as if Jeff had a gun.
“DO YOU UNDERSTAND ME?”
“Y-yes sir,” the boy stammered, his eyes bugging out of his head. “I don’t want any trouble. I … just want to get off!”
A heavy silence fell as the greasy-haired kid scuttled off the bus. Other students hunched their shoulders and suddenly found something very interesting to look at in their backpacks. On the three-mile ride to Jeff’s house no one said a word. Finally home, he threw his book bag on the floor. He heard his mother greet him from the laundry room.
“Hi honey. How are you?”
Jeff steamed past her without a word and stormed into his room. Sometimes he thought it was the only place he could get any peace. The standard-sized ranch-house bedroom had light blue walls and, as a Dallas Cowboys fan, Jeff had persuaded his parents to add a Cowboy-blue stripe around the inside of the room. A full-length mirror hung on the inside of the door. A large wood-grain entertainment center—a birthday gift from his parents—sat against one wall. His stereo system with the dual cassette deck, record player, and radio sat in the middle section, and a twenty-gallon aquarium with colorful fish sat on top. A poster of a red Porsche 944 parked in leaves hung on one wall.
Back in the laundry room Jeff’s mother stewed as she finished the last load. You did not throw your book bag down in a heap in Patty Matovic’s well-kept house. And you certainly did not disrespect your mother by ignoring her polite greeting.
Minutes later Jeff heard a knock at his door. “May I come in?” his mother said in a stern voice.
He opened the door.
“Did you hear me say hello?” she said.
Jeff put his right hand out as if laying it flat on a table, then made a 107 chopping motion to cut her off. “Mom,” he said. “This is not a good time.”
Her look softened. She had seen this Jeff before, and she knew in an instant that this was more serious than simple disrespect. “Why not?” she said with a soft I-love-you voice.
That’s all it took. Jeff’s knees went weak as everything seemed to hit him all at once—everything he had been holding in for so long. He collapsed onto his bed and bent forward until his head was lying on the mattress. Then he began to sob. His mother sat down next to him and wrapped her arm around his back. Jeff reached up with both hands and put his arms around his mother’s neck. As his tears soaked her shirt, he held on to her with all his strength.
“Aw, honey, just let it out,” she said. After a few minutes she left and returned with an ice-cold washcloth that she placed on his eyes and his neck. “What happened today?” she asked. “Are you OK? Are you hurt?”
Jeff sat expressionless, staring at his medium blue carpet. Breathing hard, he stared straight ahead before managing to force out a few words. “I don’t know why it has to happen to me, especially all in one day,” he said. “God dammit! I can’t take this!”
Carefully, Patty Matovic lifted her son off his bed and supported him as she walked him down the hallway. “I need to show you something,” she said. When they reached the end of the hall she lifted Jeff’s chin and nodded toward a famous poem on the wall that read “Footprints in the Sand.”
“This is what you need to know,” she said. “And this is all you need to remember.”
The poem told the story of a man who dreamed that his life had flashed before his eyes as he walked along a beach
with God. Sometimes the man saw two sets of footprints. But during his most trying times he saw only one. “Why haven’t you been there for me when I really needed you?” he asked God.
“The times when you have only seen one set of footprints,” the Lord explained, “is when I carried you.”
Jeff knew what it said and didn’t care to hear it again. He pulled away from his mother and walked back to his room. Turning around, he threw his hands down to his side with a violent karate-chop motion, and yelled, at the top of his lungs.
“No!” he yelled. “This is not the way it is! What that plaque, what that God, and what that church says is bullshit!”
“Jeffrey!” his mother said.
“No! Everybody in the whole flippin’ world has it so easy compared to the shit I have to put up with every god damned day! Everybody talks about walking in somebody else’s shoes.”
And now he was screaming. “I want to put my shoes outside and see if someone would try on my god damned shoes for a change—’cause no one would! The only thing that plaque got wrong is that I am the one doing all the walking, and I’ve got the whole world on my shoulders! And that’s what God needs to know!”
He slammed his door.
Fairly vibrating with anger he stood his extra-long twin mattress against the wall and started beating on it. Short, straight rights and roundhouse lefts. Savage uppercuts that scraped his knuckles and kicks that threatened to rip a hole in the fabric. He whaled on his mattress for several minutes as fast and hard as he could before finally collapsing on the floor out of exhaustion and sleeping until dinner.
BUT NOW EVERYTHING had changed. There was Vicki Weigle, not making fun of him, but smiling at him with kind eyes. There was her green flyer, giving him hope where there was none before.
Ticked Page 12