Jeff’s mother knew what he was going to say. Still, she didn’t want to hear it.
“I think this is Tourette Syndrome,” he said. “But I’d like to schedule some tests to rule out other possibilities.” Among other tests he scheduled a CAT scan to make sure Jeff didn’t have a brain tumor.
It was the first time Jeff had heard the term Tourette Syndrome. It scared him. A syndrome? He didn’t know what that was, but it didn’t sound good. And what did the doctor mean he thought it was Tourette Syndrome? He didn’t know? Jeff needed to know. He couldn’t go home still wondering.
His mother needed more information too. “If this is Tourette’s, are there medications that can help?”
“There’s no one medication that always works,” the doctor said. “It’s trial and error. Dosages differ with each patient. But I’m afraid whatever we do, Jeff’s tics will get a lot worse before they get better.”
“What do you mean?” she asked, not sure she wanted to hear the answer.
“Jeff’s going to most likely experience a lot of difficulty throughout his life,” the doctor said. “He may not be able to finish high school or get the grades you’d want him to get.”
Jeff felt a hollow, sinking feeling in his chest, as if the doctor’s words had let all the air out of his body.
The doctor looked down to address Jeff directly. “This is most likely going to limit your ability to perform in any capacity,” he said. “Seeing that you might need to go on medication, you’re probably not going to be able to perform academically the way you want. I know this is a little hard for you to hear, but this is what I’ve dealt with in the past.”
Jeff’s mother asked questions with her eyes.
“Don’t expect too much out of Jeff,” the doctor said in response. “School is going to be difficult. He may not be able to graduate from high school. He may need to have provisions made for him. And don’t get your hopes up for college. In the meantime let’s continue to explore this. I have some more patients to meet with. I’ll be in touch.”
He wasn’t a bad doctor, simply a formal one. Later Patty Matovic even worked for him for several months as an assistant office manager. But to Jeff he wasn’t a doctor but a dream crusher. Jeff wanted to play sports and go to college. He had plans, dreams. He wanted to help people. Could he do any of that now? It felt like his life was over before it had started.
In one way he was scared, but in another he was mad. That doctor didn’t know anything about him. Who was he to limit him? What right did he have to snatch away his future?
He’d show him, the old jerk!
Jeff’s mom had her own fears. How bad would her son’s tics get, and how would he handle them? How would she? And what would it mean for her family?
7
Jumping Out of My Skin
I DIDN’T KNOW what was wrong with me until 1984. One day I went to a neurologist and he told me—just like that. I was twenty-six at the time, and had been married for four years.
Yes, having Tourette’s was hard. But since I could hide the worst of it, it didn’t stop me from falling in love.
I still remember how we met. In the fall of 1976, after graduating from Lincoln Southeast High School, I enrolled at the University of Nebraska. Like many of my friends I lived at home and commuted to the downtown campus. Most days I took the Arapahoe bus. The bus system in Lincoln was clean, well-run, and friendly—much like the city itself. When my classes were over, I’d wait for my bus at a shelter outside a Toyota dealership on the edge of campus.
It was there, on a cold and cloudy day in February 1977, that my life changed forever. I remember it as clearly as if it were playing on a Blu-ray disc. I was having a horrible day. I had lost my backpack with all my books, notes, and assignments in it, and failed a geology quiz I had forgotten about. To make myself feel better I bought some donuts on my way to the bus stop.
That’s when I saw Susan sitting alone on the end of the bench. She was model pretty—slender and striking with blue eyes, porcelain skin, and a perfect figure. Her gently curled, shoulder-length strawberry blonde hair shone like a new penny.
I sat next to her, and—with great effort—managed to block my tics.
It started to rain.
“Perfect,” I said, holding out a hand to feel the droplets blowing in on me under the smoky glass shelter. “Go ahead, rain on me! Everything else has happened to me today!”
I decided I was going to make something good happen. Right then.
I held out the bag. “Donut?” I asked her.
“Oh, no thanks,” she said with a shy smile that lit up my heart like a blowtorch.
“Oh, come on,” I cajoled, smiling, and turning on as much charm as I could muster. “Have one.”
“No. I don’t think so,” she said, looking down shyly.
“Look,” I said with a nothing-to-lose confidence, “something’s got to go right today. Just have a donut. One donut! Would that kill you? I lost my backpack, I flunked a geology quiz, and now it’s raining all over me. Make one thing go right today. Just let me give you a donut.”
“OK,” she relented, taking one from the bag.
I kept talking, and before long she began to smile at me in that way that seemed to say, You’re really weird, but you’re kind of funny and sweet too.
God, she was cute. I knew within a minute of seeing her I was going to get on any bus she got on, even if it took me twenty miles out of my way. I didn’t care where I ended up—I wasn’t about to let her get away. As it turned out, the bus she got on was my bus. She lived less than two miles from me. I remembered to get her full name—Susan Torpy—seconds before I got off.
That afternoon I called her for a date.
By August 1980 we were married.
Susan never seemed to mind my head movements. At least she never said so. Almost unbelievably, we never talked about them. I guess I covered well. To most people it just looked like I was vain, and liked to flip my longish brown hair to the right. Susan knew that I struggled; she was just too nice to say anything.
We were so happy. Young and in love, we didn’t even know we were poor. After I finished up my political science degree in college, Susan worked three jobs as I studied to score high enough on the LSAT to earn a spot at the University of Nebraska School of Law.
At the time I thought I wanted to be a lawyer. I did fine in my classes but soon became disillusioned. There were too many things that bothered me, and I didn’t want to stick it out just to wake up one day forty years later and decide I was unhappy.
There’s nothing wrong with being a lawyer. It just wasn’t for me. I remember one day having a discussion with my legal writing professor about the proper way to write a legal brief. He wanted me to use all those fancy fifty-cent lawyerin’ terms that confuse regular people and keep lawyers rich because regular people need a lawyer to figure out what they mean. I wrote my legal brief in simple, unambiguous English.
He didn’t like it. I didn’t like him.
“If you want to write like that, go to journalism school,” he said.
“OK,” I said, “I will.” And I did.
I loved journalism school. I had finally found my passion: words.
Through the help of my mentors Alfred “Bud” Pagel, Dick Streckfuss, and Jim Neal, I learned the craft quickly. I wrote articles for the J-school’s paper and a regular column for the student newspaper, the Daily Nebraskan.
Before I knew it, Bud Pagel called me into his office and told me I should apply for an internship. Interviewers from top papers around the country would be visiting the school and interviewing students.
This was it—a way to get my foot in the door at a real newspaper! I signed up for numerous interviews with papers large and small. The two I was the most interested in were the two most prestigious internships: the Miami Herald and the Wall Street Journal.
I prepared for the Wall Street Journal interview first. I was so nervous as I waited to be called into the room, my he
ad felt like it was strapped to an electric paint shaker.
Calm down, I told myself. Breathe. Focus. Think about your answers.
“Jim?” a middle-aged man with black hair and Wharton-Business-School glasses asked.
I walked into the interview room and sat down. The interview had barely gotten started when the no-nonsense interviewer noticed my odd head movements.
“Can you hide that?” he said, barely looking up from whatever he was reading.
“For a little while,” I said. “If I try hard enough.”
“I’d hide it if I were you.”
Seriously? I thought. That’s your professional advice? And you call yourself a journalist? Aren’t you the least bit curious about who I am, or why my head is shaking in the first place?
I could have tried to turn it around. Made a joke. Used my charm. Or I could have told the greasy little weasel where he could stick his friendly recommendation. As the interview continued and he kept being an insensitive jerk, I decided he wasn’t worth it. At this point I wouldn’t have worked for him even if he offered me a job as the Journal’s Hawaii correspondent writing about hula girls for $100,000 a year.
My next interview was with Gene Miller and Mike Baxter, two Pulitzer Prize winners from the Miami Herald. The beginning of the interview, which took place in a small room at the University of Nebraska’s school of journalism, went uneventfully. I told them about my tics, and they told me not to worry, that they wouldn’t be a factor. How refreshing!
Gene Miller asked me to surprise them.
“Tell us something we wouldn’t know,” he said.
“All right,” I said. “You and you are diaskeuasts.”
“We’re what?” a suddenly intrigued Miller asked, leaning forward in his seat.
“Diaskeuasts,” I repeated confidently.
They looked at each other for a few seconds as I leaned back in my seat and smiled.
“What’s a diaskeuast?” Miller asked.
I had them.
“I’ll tell you the same thing my father always told me,” I said. “‘Look it up.’ I think there’s a dictionary just outside the room.” They left and returned a minute later with a fat Webster’s Third International Dictionary. When they discovered what the word meant, they looked at each other and laughed. The word the two professional wordsmiths, the two Pulitzer Prize winners, the two men who would make a decision on my future, had never heard meant, simply, editor.
“That’s great!” Miller said.
Later that month I was chosen for the internship. I went home and told Susan we were moving to Miami.
BEFORE WE LEFT for the Sunshine State, I went to a neurologist for the first time. But I might not have gone to him if it hadn’t been for a friend named Chip Morris and his mother, Bernice.
One day Chip and I were sitting and talking between classes in Oldfather Hall on the campus of the University of Nebraska. I can’t remember how we got on the subject of my head movements, but Chip knew I was struggling and wanted to help. He suggested I talk to his mother, a therapist.
Desperate for answers, I did. I met with Bernice Morris for several weeks before she looked at me and said, “Emotionally, there’s nothing wrong with you. Have you ever considered that your movements might have a physical cause?”
A lightbulb turned on over my head.
“I never considered that,” I said, pausing to wonder why. “My father always assumed my head shaking had a psychological or emotional trigger. That’s all I’ve heard since I was small. I guess I just came to believe the same thing.”
I drove home that day thinking in an entirely new way.
Physical?
It was an interesting theory. But what sort of physical ailment could cause this? Besides a little head shaking, I felt fine.
I put the thought out of my head. But several days later it came roaring back. I remember it like it was yesterday. I picked up a Time magazine and stared at a full-page advertisement bearing a large picture of William Shatner—Captain Kirk from Star Trek. The headline above his head read: DOES YOUR CHILD HAVE TOURETTE SYNDROME? Do you EVEN KNOW WHAT IT IS?
“No, Captain,” I said playfully. “What is it?”
When I read the ad I shuddered. I read it again. Then I tore it out.
“Oh my God!” I said out loud. “This is me!”
A week later I sat in neurologist’s office and listened as he changed my life.
“It’s nothing much to worry about,” he said, his voice trailing off. “It’s a tic disorder. You’ve got a disorder called Tourette Syndrome.”
“What?” I said, straining to hear. “What was the name?”
“Oh the name’s not important,” he said. “It’s a tic disorder. You’ve got tics.”
“Dammit!” I said, jumping from my seat and staring at him. “Don’t tell me the name’s not important. Tell me the name!”
“Tourette Syndrome,” he said.
“Really?” I said. “You mean it’s in the medical books? I haven’t made it up? I’m not crazy?”
“You have tics,” he said again.
“Stop saying that!” I said. “I have a name for it now. I have something to tell people. I can have a telethon for God’s sake! I have Tourette Syndrome!”
I held my breath as my neurologist gave me a prescription for a powerful antipsychotic drug called Haldol that he said could lessen my head shaking, or maybe stop it altogether.
I ran to my car and shut the door. Dad, I thought as I turned the key, it wasn’t our fault. We didn’t cause this. I soon thought a lot of impossible things could come true.
It was almost too much to imagine. A new life? No more shakes? To be normal? I drove home to my apartment, dreaming of a life without a shaking head. At home I hugged Susan after showing her the pills. I knew she would love me whether they worked or not, but when I saw her face and the look in her eyes, I wanted them to work right then. I walked into the bathroom and took a pill. Three weeks passed with no reaction. My doctor increased my dosage. Soon after taking the stronger pill, I didn’t want to shake my head.
I wanted to die.
The pills made me restless, many times worse than anything I had experienced from Tourette’s.
I paced quickly around the apartment.
“What’s wrong?” Susan asked.
I threw my hands up and continued to pace, changing directions like a tiger in a cage.
“You know that swirling energy that’s usually in my head?” I said.
“Yes.”
“Well it’s in my chest and my stomach now. And it’s like ten times stronger! I can’t relax. I gotta move. I want to jump out of my skin.”
Into the kitchen, onto the sofa, through the hallway, into the bathroom, out of the bathroom, I looked out the window, rolled on the floor, did jumping jacks and cooked two breakfasts I didn’t want. Susan tried to hold me, but I broke free of her embrace. I wanted to move. I wanted to scream. I wanted to run.
That’s it. I wanted to run. I went outside in my socks. Twelve degrees and snowing. I ran in a large circle in snow up to my calves. The cold and the exercise felt good. I didn’t know it then, but I was experiencing a nasty side effect of the medication called akathesia, a condition of intense discomfort that—if bad enough—can lead to suicide or violence against others. I never wanted to hurt anybody. I just wanted the feeling to stop. I ran for twenty minutes as fast as I could until I had worn a smooth circular path in the apartment’s unplowed parking lot. I came in exhausted. I don’t know how I got to sleep that night, but in the morning I threw the Haldol away.
The doctor asked a lot of questions. “Do you remember the first time your body did something you didn’t want it to do?” he asked. “A movement. A feeling. Something you couldn’t control?”
My whole childhood came rushing back to me. I was born in 1958 in Philadelphia. The younger of two children, I had an older sister named Nancy. My parents were academics. My father, Jay, had a PhD in the history of re
ligion. He both spoke and understood many languages, including Latin and German. His first real job was defining all the religion words for Webster’s Third International Dictionary. He met my mother, who has a master’s degree in religious education, at the University of Chicago Theological Seminary.
While they both attended that prestigious school, they were house parents for the Roby House, one of Frank Lloyd Wright’s most famous architectural masterpieces. As smart as they were, they were not ready for what Tourette Syndrome was about to bring into their lives. But then, who could be?
I remembered the exact moment my head began to move. It was 1965, and I was seven years old. Every night Huntley and Brinkley would report the total dead in the Vietnam War over our black-and-white TV. I would root for our side, without even really knowing who or why we were fighting. At the same time my older sister, Nancy, was in love with this mop-haired group of musicians who called themselves the Beatles.
I was in the bathroom of my childhood house in Swarthmore, Pennsylvania. The shakes were small, imperceptible, more like subtle vibrations than the brutal brain shakers that would come later. I just kept watching my head, as if by looking at it I could somehow stop it, or understand it, when the truth was I really couldn’t do either. So I stood there, transfixed, as the small but powerful impulses grew inside my head.
I didn’t know what to think about the head vibrations, only that I didn’t dare tell anybody about them. Although I didn’t understand it then, I must have worried that if I talked about them that would somehow legitimize them, make them real, or make them worse. That scared me. Better to keep a lid on it as long as I could.
Of course I had Tourette’s then. It was spreading, growing stronger, putting down its evil roots. I just didn’t know it.
In the second grade I began shrieking like a teakettle. I didn’t want to make the sound and tried everything to stop. I couldn’t. I’d make the high-pitched sound repeatedly in the back of my throat when I became excited. I made the sound so much at school that I had to stay home from second grade for several months.
Ticked Page 5