Ticked

by James A. Fussell

  A lot of people are fooled by Tourette’s. Just ask all the doctors in Pennsylvania or Nebraska who failed to diagnose me with a single medical problem. Or my father, who was a PhD and a voracious reader. Or my mother, who had a master’s degree and worked as a newspaper reporter. Or my uncle Dick, a psychiatrist who first suggested I go talk to somebody. Or any of my neighbors or teachers or counselors or ministers or friends. Nobody knew why I shook and twitched—least of all me.

  When I was a boy there were very few sources of information about people with Tourette’s. There was no Internet, no support groups, no HBO specials, no books, associations, nor national conferences. But it could have been worse. I could have lived in the Middle Ages, where 13 I can only imagine people with Tourette’s were thought to be possessed by the devil. When not being flogged or burned as witches, they were likely confined to asylums. Such draconian treatments eventually disappeared.

  Unfortunately they were replaced by ignorance of a different stripe. Well into the twentieth century the public and medical community thought children with tics were likely the result of abuse or bad parenting. Even in 1990 some doctors still misdiagnosed people with Tourette’s as having psychological issues, epilepsy, or schizophrenia. More than one hundred years after the first case of Tourette Syndrome was described in 1885 by French neurologist Georges Gilles de la Tourette, you’d think all doctors would be familiar with Tourette’s.

  You’d be wrong. While my neurologist was a good source of information, several general practitioners I went to in the 1990s still knew nothing about it.

  It’s no wonder. Only eighteen years earlier, in 1972, the National Institutes of Health turned down a grant proposal by the newly formed Tourette Syndrome Association because the reviewers believed “there were probably no more than one hundred cases of Tourette’s in the entire nation.” Today, a website sponsored by the same National Institutes of Health and the US Library of Medicine, the largest medical library in the world, put the prevalence of all forms of Tourette’s at roughly 1 percent of the population. That’s three million people in the United States alone. And even that’s a conservative estimate, since many people with mild tics usually don’t seek medical attention.

  Is there still misinformation about Tourette Syndrome today? You be the judge. On the forum page of something called Godlike Productions (www.godlikeproductions.com/forum1/message551803/pg1) the following question was up for discussion: “Is Tourettes [sic] syndrome demon posession [sic]?”

  “Yes,” wrote an anonymous poster from the United Kingdom. “In my humble opinion it is demon possession, and can be cured by an adept spiritual healer.”

  Then there was this response from Observer from Australia.

  “Yes!! Tourette’s is part possession. As some have stated it is the responsibility of the semi-possessed to learn to overcome. It is also in BLACK AND WHITE for the stupid to see!”

  And, finally, there was this post by Grower from the United States.

  “M I a bad person for laughing uncontrollably at people with this disease?”

  No, Grower. Just an ignorant one. And you’d better hope with all your heart that comedian Ron White is wrong when he says “You can’t fix stupid!”

  But I pray every day that they can fix people like me. They are working on it. Some researchers believe Tourette’s may be a small key that unlocks a bigger door. An article in Harvard Men’s Health Watch magazine put it this way:

  Tourette’s is especially interesting to … scientists because its symptoms lie on the border between the voluntary and the involuntary, the physical and the mental, the normal and the pathological. A better understanding of these symptoms could lead to a better understanding of many other neurological and behavior disorders.

  Honestly? At the time of the convention I didn’t care about other people’s neurological disorders. I just wanted to believe that I had a chance to get rid of mine. But more than that, I wanted to believe I was worth something, that I had a future, that my life could be more than just surviving. I was looking for some hope and some humanity in a disorder I could neither change nor understand. And despite being undressed, screamed at, and cursed out a thousand miles from home, I had found it.

  In at least some way, every person I met at that hotel helped change my life for the better. But the person with Tourette’s who would have the greatest impact on my life wasn’t at that conference. He was still a junior in high school. But by that time he had already handled more serious problems than most people face in a lifetime.

  One of his scariest challenges came in the fourth grade.

  4

  The Hand of Satan

  “HOLY SHIT!”

  Jeff mouthed the words under his breath as thunder rumbled outside his fourth-grade social studies classroom at St. Bonaventure Parish School in Glenshaw, Pennsylvania. With his hands folded in front of him he tried to pay attention to the no-nonsense nun saying something about the War of 1812. But all he could think about were the fingers of his right hand, which slowly had begun to tighten around the fingers of his left.

  At first the prolonged squeezing was harmless as a handshake.

  Then it started to hurt.

  What was going on? Why was his hand squeezing like that?

  He pulled, trying to free his left hand from the firm grip of his right—but couldn’t.

  And then it got worse. The powerful muscles in his right forearm, bicep, and shoulder doubled the strength of their flex, causing the fingers of his right hand to clench rigidly, as if in the throes of rigor mortis. This was not a hand anymore. It was a weapon!

  “Ow!” he gasped, as his eyes darted around the room and out to the hallway to see if anyone had noticed.

  He had done strange things before—blinked his eyes, hissed like a snake, and repeatedly cleared his throat. Habits he would outgrow, his mother assured him.

  This was different.

  For the first time his body not only rejected his will, but caused him physical pain. For the first time he felt like he wasn’t in control. For the first time he started to think something was seriously wrong with him.

  He moved his hands to his lap and jiggled them like a key in a lock.

  No change.

  As lightning lit up the dreary sky the nine-year-old looked at his hands as if he’d never seen them before. His right hand was now squeezing so hard it had turned his badly swollen left hand a sickly white after pushing all the blood to the ends of his dark red fingertips. His heart beat faster and his breaths became labored as he thrashed in his seat.

  Two minutes now. He had to do something—fast!

  What if his right hand never let go? Would he crack his own bones? Would a doctor have to operate? He put both hands between his thighs and drew in his knees. He didn’t know what to do. One thing he did know was that he couldn’t stay there. He stood up suddenly and bolted out the door to the boys’ restroom. His thoughts went quickly to Sister Joanne, the thin, black-haired, middle-aged teacher known as the strictest nun in school. You did not leave Sister Joanne’s class without permission. Not unless you wanted to get sent to Father Ed.

  He didn’t have a choice.

  In the bathroom he looked at his swollen left hand and felt sick. Three minutes. He could no longer feel his left hand, and part of his left forearm had gone numb as well. He struggled with the faucet but finally managed to turn on the cold water full blast. Desperate, he shoved his hands under the forceful stream, removing them only briefly to splash water awkwardly on his flushed face. The icy water splashed wildly—out of the sink, onto his pants, and all over the floor—but it did its job. The cold helped reduce the swelling enough to allow him to pull his hands apart.

  Bruised and sore, his crumpled left hand had five blood red indentations where the fingernails of his right hand had dug far into his flesh. As the blood began to return, his hand started to throb and tingle. The pain was like nothing he had felt before. It was as if he had just removed his hand from his fath
er’s workshop vise.

  With the water finally turned off, he looked at himself in the mirror.

  What is wrong with you? he thought.

  Sister Joanne had sent one of Jeff’s closest friends, Dan Kenaan, into the restroom to retrieve him. Dan, a slender, brown-haired boy about a half-foot shorter than Jeff, found his friend sitting in one of the toilet stalls with the door open, cradling his left hand like a wounded animal. By this time his right arm had grown so fatigued the contractions had stopped. For a moment the two boys stared at each other, saying nothing. Jeff looked down at his wet, red, and dripping hand, then extended it gently, as if to say “See?”

  “I’ll tell Sister Joanne you need to go to the nurse right away,” Dan said.

  Dan’s instructions were to return immediately to class with Jeff. Instead he walked beside his friend, slowly across the length of the building, to the clinic.

  When they got there Dan looked at Jeff.

  “You OK?” he said.

  “I’ll be all right,” Jeff said. “And you can tell Kevin I’m OK, too.”

  Dan nodded and walked back to class. After telling the nurse he had an upset stomach, Jeff called his mother and went home. He never told anyone what really happened.

  JEFFREY PAUL MATOVIC was born on January 23, 1973, in Canton, Ohio. He was such a happy boy his mother called him her “Sunshine Baby.” But it didn’t take long for that sun to go under a cloud. By the time he was a toddler, doctors became concerned about how his legs were growing. The bones from his hips to his knees curved. Doctors fitted him with heavy steel braces that he wore twenty-three hours a day. Twenty buckles that were progressively tightened forced his bones to straighten, while an elastic strap running from one brace to the other forced his hip joints to open.

  His father affectionately called his youngest “Buckle Boy.”

  The first day Jeff got his braces his mother carried him into the living room and deposited him on the floor next to his older brother. A short time later, Steve was impressed enough to call something to his parents’ attention.

  “Well, look at this big boy!” he said.

  Jeff had flopped his left leg over his right, forcing him to roll onto his belly. Then he pushed on the floor with his hands and—for the first time with his new braces on—stood up by himself.

  Although he hated them, Jeff wore the buckles faithfully. The one hour he didn’t wear them came after his afternoon nap, when his mother let him run and play. When it was time to put them back on, he never ran from his mother.

  But he always cried.

  He had just learned to climb stairs and ride a tricycle. It broke his mother’s heart. She just prayed it would do him some good.

  His parents took Jeff to mass each week in a little red wheelchair to receive blessings from a priest. Six months later his doctor removed the braces, and Jeff’s legs grew long and strong. He spent summer days racing with his friends through the streets of his suburban Pittsburgh neighborhood.

  The sunshine was back!

  At least for a while. Soon his parents began to notice odd sounds and behaviors. Their youngest would obsessively smell things, and hiss like a snake. Jeff knew something was wrong with him years before his diagnosis. Tears rolled down his cheeks nearly every morning while walking to first grade.

  He still remembers his first tic. It was 1977 and he was a kindergartener in the Houston suburb of Spring, Texas, where his family had recently moved, following his father’s work for the steel industry. He had just gotten out of the bath and was getting ready to pull on his Dallas Cowboys pajamas on a warm and humid night.

  “Make sure you dry off completely, honey,” his mother, Patty Matovic, called. “You don’t want to stick to your PJs.”

  After brushing his teeth and combing his short black hair he looked in the mirror expecting to see himself staring back. Instead he saw a stranger making a series of odd facial grimaces. He watched in fascination and concern as his jaw involuntarily moved to the right, and then back to the left so hard it caused his eye to close. Over and over his lips puckered into a fish kiss as if he were a smallmouth bass. Then, just like that, it stopped.

  “That was weird,” he said with a shrug. “I guess today is just one of those funny days.”

  He had no idea what was to come.

  Before long he was forcefully spreading the fingers of his hand apart as hard as he could.

  “Relax,” his father would say. “You’re so fidgety.”

  Worried he would hurt himself, his mother gave him a large, rectangular wooden block to hold in an effort to keep his fingers occupied.

  It didn’t work.

  That wasn’t the only thing he did with his fingers. As a small boy he smelled them. Not like a normal child would smell something, but by jamming them—all of them—under his nose at the same time. He’d press them tightly against the opening of his nostrils, as if compelled by some unseen force. Then he’d take a sniff—a deep, long, lusty sniff that made a sound that could be heard halfway across his family’s ranch house.

  He’d smell other things, too—a dirty sock, a pencil, a fork, a piece of paper. As with his other habits, his pediatrician said he would outgrow it.

  Jeff hated having to smell things. When he would smell his scissors at school his teacher would say, “Put those scissors on the desk! You’re going to put your eye out!”

  He put the scissors down, then sat on his hands to keep the confusing compulsion from making him smell them again. That was hardly any better. Soon after, his teacher would yell at him for not doing his work.

  In another class a teacher would ask him, “Why are you blinking your eyes so much?

  Jeff didn’t just blink. He burst his eyelids as wide open as they would go, and thrust his eyeballs forward forcefully toward the ceiling as if trying to make them pop from his head. At the same time his head jerked back. Then he would slam his eyelids closed and his head would nod forward.

  By fifth grade Jeff was taller than many of his teachers. Fast, strong, and coordinated, he could throw or kick a ball farther than anyone in school. But combined with his tics, his athleticism was too often explosive and off-putting. One time, while playing four square, he felt a sudden arm tic. Embarrassed, he threw the ball to make the tic look natural.

  Afterward a girl told him he couldn’t play anymore because they were afraid he’d throw the ball into the street.

  He didn’t know what to do. Often he would pretend to be sick and ask to go to the clinic. He would lie on a small bed as the nurse called his mother.

  “What’s wrong, sweetie?” his mother said in a soothing voice.

  Tears rolled down his face. “I miss you and Dad,” he said. “And I just want to come home.”

  The nurse would put a thermometer in his mouth. Sometimes he would cup his hands to his mouth and blow warm air to try to make the thermometer heat up.

  It didn’t work.

  His mother consoled him.

  “Jeffrey Paul, calm down,” she’d say. “Take a cool cloth and wipe your face and just listen. Now that you’ve calmed down, I want you to stay at school. The school day will be over in a couple hours.”

  He hated that line. A couple hours? Was she crazy?

  “Sometimes your dad doesn’t feel like going to work. But sometimes you just need to hang in there.” She had no idea how much he did—every day.

  Home was better. But there were problems there too. Many mornings his father, Jim, heard the loud sniffing sound from the kitchen. The distracting sound made it hard to concentrate on the morning news coming from the radio that sat on the kitchen counter. “Why does he do that, Patty?”

  Slender and athletic, Jim Matovic wore white shirts and dark pants to work at a company called Jones & Laughlin, where he worked with computers in the steel industry. He spent his day with facts and numbers, debugging codes and solving problems. He didn’t like it all that much. But at least a string of computer code never sniffed so loudly it caused him to mis
s Paul Harvey.

  “Well?” Jim Matovic said, taking a sip of his coffee.

  Patty Matovic didn’t know why her youngest son sniffed so violently, or why he sometimes hissed like a snake—or cleared his throat, blinked his eyes, kicked his leg, punched at nothing, or forcefully spread the fingers of his hand. He wouldn’t talk about it. He made excuses, or changed the subject, or left the room.

  So she just said what she always said, hoping it was true. “It’s just a phase, honey,” she’d say. “A habit. He’ll grow out of it.”

  That was fine when Jeff was three. But now he was ten.

  “LET’S GO! WHO’S got the ball?”

  It took more than a week for Jeff’s left hand to heal fully from the squeezing attack. As soon as it did he knew exactly what he wanted to do—play baseball with friends. In spring he played every day after school and on the weekends. And in summer he played almost every night.

  Before the games his mother would mix up lime-green Kool-Aid—enough for the entire neighborhood—and boys on bikes would fill their school Thermoses with the jade-colored liquid. Then they’d grab their gloves and take the short ride up the hill to St. Bonnie’s and play on the school’s large faculty parking lot.

  For Jeff, staying active helped stem the tide of the mysterious movements and obsessive compulsions gradually taking over inside his body. There was nothing like running, throwing, catching, hitting, and fielding to help take his mind off it for a couple of hours.

  As summer flew by the strange urges only grew stronger. Until then he had hidden his movements, explained them away, changed the subject, or simply refused to talk about them. But as they started to combine and increase, he could avoid them no longer. One night, after a two-hour baseball game in late August, he asked Dan Kenaan and Kevin Keenan to stick around.

  “You guys are my best friends in the whole world,” he said, looking down. “So … I’m going to tell you something that nobody knows—and don’t tell anybody else, OK?”

  They nodded.