Jeff took a breath and blew it out. “You’ve seen how sometimes I, you know, move weird and stuff?”
He picked blades of grass and flicked pieces of gravel with his index finger as if kicking the extra point in a game of paper football. As he reclined in the grass his leg began to kick and twitch, causing his thigh muscles to convulse under his shorts, as if to music.
Not now! he thought. His heart sank. What would they say about this?
He knew what they’d say: “You know what, dude? You’re a freak! Don’t ask us to come back and play with you anymore!”
His eyes began to blink rapidly. He looked off to the left and expelled air rapidly from his lungs with a sharp Huh! Huh! sound.
“You OK, man?” Kevin said.
“Yeah … uh, yeah,” Jeff said unconvincingly.
“Dude, it’s cool,” Kevin said. “Whatever it is, just tell us.”
Jeff’s tics were alive, with their own personality. As soon as they knew someone felt comfortable around them, they came out even stronger. And this was a green light to let ’er rip. Jeff’s right arm began to punch, then his left. His eyes blinked and bulged out of their sockets, and his neck began to roll.
He steadied himself, then swallowed hard. “Those—huh! Those things I do in class when my arm and my neck move and you see me blink and stuff,” he said. “I can’t help that. And I don’t want it to happen, ’cause it hurts.”
“Dude, do your parents know about this?” said Kevin. “Your parents are awesome! They might even know what it is or help you.”
“It ain’t that easy,” Jeff said. “I wanna be like everybody else. I don’t want to be weird. I don’t want to stand out anymore than I already do.”
“What are you talkin’ about?” said Dan.
“People—Huh! Huh!—people point and laugh.”
“I’ll beat ’em down!” said Kevin.
“Thanks, guys,” Jeff said, almost out of breath. “Just don’t tell anyone, OK? ’Cause I’m still trying to figure this out.”
“No problem, man,” Dan said.
When they got up off the grass, it was nearly 9:00 PM and growing dark. Kevin and Dan slung their bags of gear around their shoulders to head home.
Before getting on his bike, Kevin looked back at Jeff. “Dude, it’s all right,” he said. “We’ll get through this.”
“Yeah, whatever, man,” Dan said. “Whatever you do it’s not like we’re not going to like you anymore.”
Overcome with relief, Jeff grabbed Dan and lifted him high in the air, causing the balls and bats to tumble out of his bag. Then, using all the power in his nearly six-foot frame, he lifted Kevin and gave him a high five. “Thanks, guys,” he said.
“All right, all right,” said Dan, putting an end to the touchy-feely stuff. “Let’s make a bet. See that sign?”
He pointed to a stop sign about thirty feet away.
“Yeah,” Jeff said.
“Let’s have some target practice.”
Jeff looked at the sign in the distance and smiled. He nodded as Dan flipped him an old scuffed baseball.
“Watch this,” he said. He stared down the sign, then went into a pitcher’s windup. Then he fired the ball as hard as he could with a grunt.
“I just wish things would stop!” he said, emphasizing the last word just as the ball clanged hard off the metal sign, leaving a baseball-sized dent between the T and the O.
Then Dan threw.
“It’s gonna stop!” he yelled, leaving another dent.
Then Kevin.
“It’s gotta stop!”
Fifteen minutes later the sign was nearly facing the opposite direction.
It was past nine, and past their curfew.
By this time, Jeff was nearly out of breath from the exertion he put into his throws. “I think we got it, dude,” Kevin said, heading for his bike. “We better go.”
“Wait,” Jeff said. He ran to the pockmarked sign and turned it back the right way.
“Cool?” he said, smiling and raising his open hand.
“Cool man,” Kevin said, completing the high five.
5
The Tic Explosion
JEFF DIDN’T KNOW what was wrong with him until 1983.
He was ten years old.
The weekend that changed his life started innocently enough as he walked home from fifth grade with his older brother.
“Man, you got it comin’ to you when we get home and play pool,” said Jeff, who resembled a nearly six-foot-tall Beaver Cleaver. “You’re goin’ down!”
“Bring it on, little man,” said Steve, who—at two years older—was a few inches taller.
“Whatever, Holmes.”
When they reached their front yard they removed their backpacks and Jeff held the front door for his brother.
“Ladies and losers first,” he said.
“Ahhh, shaddup,” said Steve.
As they did most days after school, they headed to the ranch house’s finished basement—the War Room, as they called it.
“Rack ’em, lady,” Jeff said in advance of a game of Eight Ball.
“I might as well, ’cause I’ll be breakin’ once I win,” said Steve.
Jeff and Steve were accomplished at pool, having played since they were tall enough to see over the side rail. Their father, who had played day and night while stationed at an air force base in Okinawa, taught them both pool and Ping-Pong.
Jeff drew back his stick and sent the cue ball rocketing forward in a white blur. The crack of the break echoed through the basement as he sent the blue ten ball rolling into a corner pocket.
“Stripes,” he called.
The brothers traded shots and good-natured jabs until Jeff had only two balls left. He chalked his cue as the room grew quiet. Before he could shoot, his right arm flew from his side in an involuntary tic. He yawned and played it off as a stretch, then went back to his shot.
Although Jeff had ticked in front of his family before, he never talked about it. It was too embarrassing, too humiliating. He sooner would have lit himself on fire.
He sniffed and blinked, then pretended to blow his nose, covering his face with a handkerchief. Glancing at Steve out of the corner of his eye, he wondered how much he had seen, how much he knew. He bent over the shot again, half studying the angles and half wishing he could talk to his brother about the strange urges and compulsions threatening to tear him apart.
Jeff chalked his stick again as he stared straight ahead.
“Today would be nice,” Steve said.
Jeff took a deep breath and blew it out. “Life’s just not fair sometimes, is it?” he said.
Steve furrowed his brow. “It can be pretty brutal,” he said. “Why do you bring that up?”
“Just lately a lot of stuff’s been getting in my way, and it’s a lot of stuff I can’t control,” Jeff said.
He shot, and missed.
“What are you getting at?” Steve asked as he walked around the table for his shot. “Is it girls? Is anyone treating you bad or messin’ with ya?”
“No. Nothing like that. It’s just a …”
“A what?” Steve shot and missed.
“It’s just a shitty time for me right now,” Jeff said. He looked away. “But let’s just get on with the game.”
In one way Jeff never wanted to have to talk about the strange things his body was doing. In another he almost wished Steve would ask him about them. He almost did months ago when they were walking home from school.
“School’s goin’ pretty good, huh?” Jeff said.
“Classes are pretty good, recess is awesome, lunch is average at best.”
“For me things are going … fine,” Jeff said, looking at the ground. “I guess.” He kicked at stones and sticks on the pavement as he walked.
Steve stopped Jeff and grabbed him by the arm.
“Are things really OK, or are you just saying that?” he said.
Jeff couldn’t look at his brother. He stared into the sky instead.
“You know,” Steve said, “if you ever just need to tell me something, no matter what it is, you know that’s cool with me.”
“Yeah, I know,” Jeff said, blinking back tears. He fidgeted with his shirt and adjusted his belt. The lump in his throat felt like a beach ball. “Things are … things are not as good as I’d want them to be.”
THAT SUNDAY, IN the living room, Jeff and Steve watched the Miami Dolphins play the New England Patriots. “The Killer Bs are gonna sting these dudes!” Jeff said, using the popular nickname for the Dolphin defense, which had six starters with last names that started with B.
Steve got up from his recliner and left. Moments later he returned with a dead bee in his hand that he had been saving for a week.
“Here’s your Killer B, numbskull!” he said, pushing the dead insect close to Jeff’s face.
Jeff jumped off the couch as if Steve had poured hot coffee in his lap.
“You’re sick!” he said, slapping Steve’s hand. “Get that thing outta here!”
The bee fell onto the carpet by the coffee table.
“You better pick that up. Mom just vacuumed,” Jeff said. He imitated his mother’s stern voice. “You better get that straight, Steven James!”
“Yeah, yeah. Shut up.”
Steve threw away the bee in the kitchen. When he returned he turned off the TV.
Jeff threw up his hands. “What’d you do that for?”
Steve held out a bright pink rubber football they called the Pinkie.
“Get your butt of that couch,” Steve said. “We’re gonna throw the ball.”
In their large backyard Steve grabbed the Pinkie and lined up like a quarterback under center. Jeff lined up wide to his left like a receiver and waited for Steve to call the play. Jeff ran about a half dozen pass patterns before Steve called a play that called for Jeff to go deep.
Steve put a serious look on his face. He looked left and right as he placed his hands under an imaginary center and pretended to survey the defense.
“Forty-four, L, F, three-thirty-three, on two. Set. Hut hut!”
Jeff sprinted fifteen steps and cut hard left to fake an out route. After Steve pump faked, Jeff pivoted and exploded upfield.
This was Jeff’s favorite play. The most exciting play. The long bomb!
“Elway back to pass,” Steve called as Jeff sprinted across the emerald grass as fast as he could go. “Sees his man …”
Steve let the Pinkie fly in a high arcing spiral that seemed to hang in the sky forever.
Jeff looked into the high blue sky, his excitement building as he looked up and found the spinning ball. It was a perfect pass, and he was going to catch it. Then Steve was going to raise his arms and yell “Touchdown!”
And then it happened. Something weird. Something he didn’t understand. Something he had never felt before. Suddenly, Jeff broke off his route and shook from head to heel. The ball sailed far over his head as he came to a standstill and kept shaking—hard arm and leg jerks accompanied by a series of deep knee bends and the rapid exhalation of air.
“Huh! Huh!” he grunted, punctuating each knee bend with a shake of both arms. He did it quickly, five times in row, as if under the spell of a strong spasmodic twitch. In the distance he heard the ball land.
Panting, he turned and looked at his brother, who looked back in stunned silence. As Jeff began walking toward the house in tears, his stomach sank. He knew his brother had seen it this time. He had seen his secret. He had seen his demon. He had seen the malfunctioning part of him that he had tried so hard to keep hidden. He felt diminished, damaged, flawed—no longer just the younger brother, but now the imperfect one as well.
He just knew things would never be the same between them.
Steve caught up with Jeff as he walked toward the screen porch.
“You OK?” he asked.
“I’m not feeling so good right now,” Jeff said in a small voice. “I need to talk to Mom.” Steve put his arm around his brother and walked him in to see their mother.
Inside, Patty Matovic had been watching out the kitchen window. “It was as if his entire body had been attached to a rope and it just went up and down, up and down, up and down,” she recalled later. “It was like he was getting taller, then shorter, taller then shorter. It was mesmerizing.”
She thought about a television program she had recently seen on Tourette Syndrome. She had noticed his nervous habits when he was younger. But everyone told her they were just phases that he would outgrow. Indeed, each habit seemed to be replaced by another. One day he would grunt, another he would clear his throat or hiss like a snake.
She tried to ignore them.
But she couldn’t ignore this. It was the absolute worst thing she had ever seen him do. Immediately she suspected Jeff had Tourette’s. And she knew her family was in big trouble.
“Mom,” Jeff said, running into the kitchen. “Something happened outside. I don’t know what it was. My body just acted all weird on me. Steve and I were playing catch and I just kind of … shook. I didn’t mean to. It just happened.”
They sat together on a padded red kitchen booth.
“I saw what happened,” his mother said.
“You did?” Jeff said in a small voice.
“If we need to see a doctor about it, we will. But I don’t want you to feel it’s your fault. It’s pretty clear that this was something you didn’t want to do.”
“OK,” Jeff said, still confused.
“Why don’t you go relax, watch TV, or play in your room,” his mother said.
Her calm demeanor belied more serious concerns. Tourette’s was a whole new world, both unfamiliar and frightening. And it was bound to change their lives.
She couldn’t have known how much.
WEEKS LATER JEFF waited in a neurologist’s office in a three-story medical building in downtown Pittsburgh. His long legs dangled off the end of the examination table, keeping time like giant pendulums. He stared straight ahead as he sat on a thin sheet of white paper waiting for a doctor he would have given anything not to see.
While he waited he imagined more dire possibilities. His shoulders slumped from worry.
“Sit up straight,” his mother said, tugging at his shirt collar. The noodle-thin boy snapped his head around and pulled away from her touch. Her brown eyes softened.
“It’s going to be OK, honey,” she said, softly stroking the back of his closely cropped black hair. “We’ll get through this together.”
He closed his eyes and drew in a deep breath.
“Mom?” he said.
“Hmm?”
“Am I going to die?”
6
Dr. Dream Crusher
AS JEFF WAITED for the doctor he looked at a laminated poster of a brain tacked above a small sink. His wide eyes devoured every inch of the detailed illustration. It was so shiny, plump, and impressive. Its pink cerebellum and red frontal lobe seemed to glow with good health.
Now this was a brain, he thought. The kind of brain everyone should have, the kind of brain that functioned properly without causing any kind of crazy problems. Too bad it wasn’t his brain. His brain was different. His brain was—bad!
He pictured it like an old mushroom, shriveled and shrunken in shades of black and gray. The longer he looked at the healthy brain on the wall, the madder he became.
“Look at me,” it seemed to be saying. “I’m perfect. The perfect brain!”
He imagined it goading him in the singsong voice little kids used to tease each other.
You don’t have what I’ve got. Nana-na-na-na-na!
His shoulders dropped. Not only was his brain not perfect, it probably was broken. Maybe he had brain cancer. What if he became paralyzed? Would he ever be able to go out and play with his friends again? The scary possibilities rolled around in his mind like a marble in a box.
“Mom?” Jeff said.
“Hmm?”
“Am I going to die?”
His m
other turned to face him.
“No, honey. What would make you think that?”
“Huh!” Jeff said, forcing air from his mouth as his arm flew out from his side. “I don’t know.” His arm flew out several more times, followed by several hard leg swings that made him look like he was trying to kick a soccer ball.
“I’m sorry,” he said.
“You don’t have to apologize,” his mother said, rubbing his cheek. The disturbing images of Tourette’s from the television program she had watched raced through her mind. But she couldn’t let Jeff see her concern. She took a breath and managed a smile.
“You’re going to be fine,” she said in a reassuring voice. “We just need to know a little more about what’s going on so we can help you.”
Jeff didn’t want to be helped. He wanted to leave. He wanted to run, so fast and so far that no one could ever find him.
Then again, maybe his mom was right. Maybe he was going to be fine. He was a good student. He could think clearly and hold conversations. And he was very athletic. Maybe all he needed was to take a pill. Yeah. They had pills for everything!
He’d know soon enough. The doctor walked through the door.
TALL, THIN, AND serious, the middle-aged neurologist stared at his clipboard for what seemed like an eternity. Typically he saw elderly patients. Rarely did a child walk through the door.
Jeff’s heart seemed to beat in his stomach and his throat at the same time. After walking across the small room the doctor sat down and jotted a few notes. It was only about ten seconds, but it was the longest ten seconds of Jeff’s life.
Just tell me! Jeff thought. Am I going to die? Live? How long do I have?
The doctor began a standard examination, shining a light in Jeff’s pupils and checking other vital signs while observing the variety of his tics. Jeff didn’t like his new doctor. It was like being worked on by a mannequin. The brown-haired man in the white lab coat seemed callous, cold, and unemotional. He wore a neutral expression and worked almost robotically. Jeff scanned his face, looking for emotional reinforcement or reassurance. He wanted to hear that everything was going to be all right, that he could go on being a normal kid, that he wasn’t going to die. All he got was the man’s deep monotone telling him the bad news.
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