The World’s Strongest Librarian: A Memoir of Tourette’s, Faith, Strength, and the Power of Family
Page 7
My mom told me that I’d been the bigger man, and that turning the other cheek is always better. But turning the other cheek was all I knew how to do.
I prayed a lot in the two weeks between the game in Reno and the visit to the neurology clinic at the University of Utah. I needed answers.
I thought I might have some weird form of cancer. I thought I might have some brand-new disorder that would be named after me once I died. My tombstone would say, Here lies Josh. He just wanted to quit blinking and yelping.
When we pulled into the parking lot at the neurology clinic I started to sweat. I was torn between wanting an answer and wanting to control what the answer would be. I only wanted there to be something officially wrong with me if it also came with a quick solution. The doctor would reach into his pocket and produce the bottle of pills that he kept on hand for those rare boys who couldn’t quit barking in math class. I’d pop a couple and be cured by the time we got home. My condition was annoying, but was I making too much of it? It distressed me, but what if I got worse the second I knew what was happening to me?
My parents were out of the car for about thirty seconds before they realized I hadn’t moved. My mom leaned in and squeezed my hand. “Come on.”
I sat in the waiting room while my knees knocked and my hands shook like I was being marched to the gallows. My memories of the doctor are unremarkable: He had red hair and a white coat. He spent fifteen minutes having me stand with my heels together, touch my nose with my index fingers, and then watching me intently and scratching notes on a pad while I tried not to twitch too much. I was suddenly worried that if I showed him the worst of my symptoms he would misdiagnose me and give me the treatment meant for people with syphilis or rabies.
“This is Tourette Syndrome,” he said, putting down his pen.
And there it was, just like that. I had a thing and the thing had a name.
“I read a book about Tourette’s,” Mom said. The book said this, and the book said that, and “Oh, my goodness, it’s a relief to know what’s actually going on, because Josh has been so nervous. Haven’t you, Josh?”
“So what now?” I asked. Whatever the diagnosis, this was the only question I really cared about.
“Well,” said the doctor, “I wouldn’t recommend any medication, unless you feel like the situation is unmanageable. But it doesn’t sound like you’ve had too bad of a time of it until now.”
“But there are medications that would help with this?” asked my dad.
“Some patients show improvement with certain drugs that are typically used to treat blood pressure issues, and there have been studies which suggest that some people with Tourette’s respond well to antipsychotics.”
Now this was what I had worried about. Was I psychotic?
“But you wouldn’t recommend any of those right now, you said, right?” asked my mom.
“There are side effects to many of these medications that may not be worth the cost if the symptoms are currently tolerable for Josh.”
My parents looked at me. Were the symptoms tolerable? Yes, meaning I wasn’t in physical pain, I went to school, I played on the basketball team and had good friends. Girls weren’t paying any attention to me and my haircut was bad, but for the results-oriented person examining my life on paper, it probably looked like I had nothing to whine about. And that was a question I asked myself constantly: Was I whining? Would a tough person make an issue out of any of this? Would my dad have been here at the doctor in my place if it had been him? No way. Would my mom have been here? Probably not until she had put in another year of prayer.
“I’m doing okay,” I said.
“Josh, you’ve actually been having a rough time,” said my mom.
“I’m fine,” I said.
Silence.
“I don’t want any pills,” I said. I didn’t know whether that was true. But I said it, the doctor had other appointments, and we left without pills, prescriptions, or much in the way of progress. But we had a name. The question “What is wrong with me?” had an answer. The answer was Tourette Syndrome. My dad’s knee-jerk declaration from nine years earlier had been correct.
“I knew it,” he told my mom as we drove home.
She said nothing.
“Josh, I knew it. I told her!” He held up his hand. I gave him five. Then he offered his hand to her.
“Are you done?” she said.
“I knew it way back then,” he told my siblings when we got home. They had almost zero reaction, since they had never heard about any of that. They knew I’d gone to the hospital and they just wanted to know if I was okay.
“So you’re okay, though?” said Megan after I recapped the meeting for her.
“Yeah.”
“Good.” And that was the end of it.
Back at school I vowed not to tell anyone what had happened.
“I just found out I have Tourette Syndrome,” I told Sarah in science class while we conducted an experiment with tuning forks.
“Yeah, I’ve got Tourette’s,” I told Mr. Williams, my electronics teacher. “It can be pretty bad.”
“Yeah,” I told my friends at lunch, “there’s a name for what’s been going on with me.”
It was even a day where I wasn’t having any noticeable tics. But I managed to tell everyone I could. Nobody had much to say besides, “Oh, man, that sucks,” because they knew even less about it than I did, if that were possible.
During the last hour of school, the tics returned and hit with such frequency that catching my breath was a challenge.
“Mom, I’m going stay home from school for a while,” I said that night. I was too embarrassed to deal with it.
“No, you’re going,” she said.
“It’s my decision,” I said.
“No, actually, it’s not,” she said. “It’s mine, but you’re not even deciding. You’re letting this thing decide for you. Don’t.”
This was the first time I saw Tourette’s as a separate being; a parasite that I was in a relationship with. I named her Misty, short for “Miss T.”
Here’s the crash course in how my Tourette’s feels. I’m not going to explain what causes it, because doctors are still speculating about it. There are theories about dopamine imbalances and nutritional sensitivities and the hunt is on for the guilty genes, but that information hasn’t ever been useful to me. What I can talk about is what it feels like to have tics, and to need to have tics.
Think of what it feels like when you need to sneeze. You become aware of it slowly; first there’s an itch. Maybe you wiggle your nose or squint to scratch it, but the itch builds until you let it out. Of course, you could hold the sneeze in, but what happens if you stifle it? There’s no relief or resolution. It feels wrong. You sneeze so the feeling is expelled.
When I have a tic, whether it’s a noise or a movement, it’s similar to the urge to sneeze. There’s a pressure that builds up in my eyes if I want to blink, in my forehead if I want to wrinkle it, in my shoulders if I want to jerk them up toward my ears, in my tongue if I need to feel the edge of it slide against a molar, in my throat if I need to hum or yell or whistle. The urge can also be everywhere at once, which results in a tic where I flex every part of my body, hard and fast. Wherever it is, sooner or later, I have to let it out. But the relief doesn’t last long. The pressure might fade, rebuild, and jump out again in a few seconds, a few minutes, or longer.
I can hold a tic in if I really try, but there’s a price to pay for doing that. It seems that for me, I must release a specific intensity of tics each day. I can mete it out in lots of small tics, or I can hold it in and have it rage out in a blast when I get home from work, like a clogged steam valve on a radiator. I hold it in on airplanes, in meetings, in church, in classrooms, and whenever possible, on the reference desk.
For the rest of the book, you can assume that I’m always having tics. I thought about writing the noises into the dialogue, but that quickly became so obnoxious that your experience re
ading this book would have been just as annoying as it is to actually have the tics. So here’s what I’ll do: In the coming chapters, when I experience new, significant tics, I’ll say so. Once I’ve had a new type of tic, you can assume that it stays in the rotation. Each new tic is stacked on top of what came before it.
So then, on with it.
Misty spoke her own language, but used my mouth to do it. She often started and finished my sentences, although she didn’t interrupt me while I was talking. She made me say things like:
“Woo!”
“Hep!”
“Hup!”
“Dit dit deet.” Whenever she spoke in multiple syllables, each sound descended in pitch.
“Ssss!”
“Nee nah.”
“Hmm HMM.”
“Zur.”
But they’re just noises, I told myself. I could handle her, now that I knew who she was.
My mom’s father built a barn all by himself when he was thirteen. He lived in a tent with his family during the Depression. When it was time to feed his family of nine during the lean winter, he poached deer, despite being Moab’s chief of police. This was a man who didn’t make excuses, and a lot of that had trickled down to my mom. She didn’t want some label interfering with my becoming a productive citizen.
Neither did my dad. For over a decade he’d risen between three and four in the morning to drive the ninety miles to the gold mine for ten-hour shifts that started at six o’clock. “Work is what a man does,” he said. “Men who don’t work hard aren’t normal.” If I was going to be normal, I’d have to work.
My first job was at a trap-and-skeet club, where I sat underground in a bunker, loading a machine with clay pigeons. The throwing arm of the machine was a thick dull blade that revolved from its base in a noisy parabola. Its arc came within inches of my chest, but it felt like it sliced just out of range of my throat. But I knew that it was completely safe, because my boss said, “It’s completely safe.” The shooters would arrive and buy each other drink after drink until they were sufficiently inebriated to load and operate their shotguns as I sat in the bunker beneath them with my eyes on the blade.
Soon, my hand left my lap and began tapping the blade with the knuckle of my index finger. Boom! The blade flung itself in a circle just after I pulled my hand away. My heart twisted like an uncoiling snake. My hand went back to the blade. I put it back on my leg. The pigeon flew through the opening. I replaced it with my right hand and Misty put my left hand in front of the blade. I didn’t tap it this time; I actually put it in the blade’s path. The blade was dull—I don’t think it would have sliced my fingers off. But it certainly would have broken them. I watched all of this in horror, from a great distance, even though I was participating. Nobody outside knew that anything was wrong inside the bunker. But I couldn’t keep my hand still. Even when I sat on it, there was an undeniable urge to put my hand in harm’s way. It wanted to be on the blade. It wanted to be in danger. It was as difficult to ignore as it had been to stay quiet in Ms. Henderson’s math class. But now I was in danger. Or was I? It wasn’t like I absolutely couldn’t keep my hand under me. It was more that I wanted to put it on the blade and keep it underneath me. I didn’t feel right until I tapped the blade with my finger. The pressure would build. The “sneeze” tormented me until I let it go. But the satisfaction was momentary. The urge to do it again would build immediately. Sooner or later, I’d hurt myself.
The job didn’t get easier as the weeks wore on. I desperately wanted to quit, but no matter how I looked at it, my parents would think I was making excuses. “So your hand won’t sit still, huh? My dad lived in a tent!” “So you’re scared, huh? Try being scared of not knowing when you’ll get paid again!”
Then a solution presented itself so perfectly that I half believed it was divine inspiration. When I told my parents I wanted to quit, my dad immediately said, “Why?”
My mom said, “But you’ve only been there for a couple of months, what’s wrong?”
I took a deep breath. “This is going to sound dumb, but—”
My dad nodded.
“—but I feel bad missing church on Sunday. I know it’s only a couple of times every month but I feel like I’m getting out of the habit.”
My mom was nodding as proudly as if I’d just given my allowance to a homeless man. My dad wasn’t as pleased. “I’ve been working for years and I haven’t always been able to get to church and I’ve been fine for it.”
“Frank, you’ve told me that you miss it when you’re away,” said my mom.
“But I don’t ignore my responsibilities, miss it or not.”
“It just doesn’t feel…right,” I said. I sighed. There’s a great case to be made for using religion to win arguments, as long as you only debate with other believers. My dad faced a difficult proposition: He could force me to keep my job, but that would look like he was making light of my spiritual commitment.
“Josh, we’ll support whatever you decide to do,” said my mom, patting my dad’s knee.
I took a job as a cook at Pizza Hut, which didn’t interfere with Sundays. It turned out to be more dangerous than the trap-and-skeet club.
I couldn’t keep my hands under control around anything warmer than my video game console at three in the morning on a Sunday. Bare lightbulbs, seat-belt buckles that had gotten too much sun, and oven burners—all bad news. I’d get the urge to tap them with my elbow. And if one elbow tapped, the other one had to as well. Sometimes my forehead needed to touch things.
The first time I washed dishes at Pizza Hut I burned my hand on an iron pizza pan. At any moment during the evening shifts there were at least thirty of them waiting to be washed. They’d arrive about three minutes after the pizzas had left the oven, so the pans were still hot when they got to me. I’d been alone for about five minutes when I began tapping one of the pans with the knuckle of my right index finger. Soon all my fingers wanted in on the action. Not only was I playing finger-tag with the pans, the pans weren’t getting washed. Although I was wearing an oven mitt, I could still feel plenty of heat and had to pull my fingers away.
Misty hadn’t yet scarred me, so maybe I was just being a weenie. But if I ended up covered in third-degree burns, who could deny me accommodation or sympathy? My dad would understand a burn, and my fingers kept dancing back to the hot pans.
My parents argued over whether I should be allowed to quit. “If it’s too hard for him, he shouldn’t have to do it,” Mom said.
“How does he know it’s too hard if he doesn’t try to stick it out for a while?” Dad asked.
My mom prevailed. I was off the hook.
* Not the school’s real name
CHAPTER 4
305.31—Lust Religious Aspects Christianity
231.74—Revelation
123—Free Will and Determinism
The public restrooms at my library are vile. Every minute someone’s in there relieving himself or bathing in the sink. The air doesn’t circulate and the stench is palpable. But they have nothing on the teen section. To walk through the young adult area is to traverse a cloud of hormones and poor hygiene and lust and anger that’s as real as a thicket of skunky roadkill.
Whenever the teenagers are quiet, I assume it’s because they’re impregnating each other on the library furniture. Teenagers get so wrapped up in each other that they don’t even think to hide. One night while I was closing I saw a young couple sitting on a couch. Well, he was sitting on a couch. She was sitting on his lap and their faces were locked together tightly enough that, had I not been able to hear their rough breathing, I might have wondered if they were alive. I tried to make my footsteps heavier, but if they heard me, they gave no sign.
I cleared my throat. I was about to say, “Look, you can’t sit on top of him and do it in the library,” but we were closing, so I just said, “You’ve got about one minute before we close.” Security had to remind them five minutes later. They wandered away, presumably down to L
evel 2. Level 2 is the fiction department; it also houses the Canteena, which is the area reserved for teenagers and rutting. It has a television, colored benches, and computers for surfing the Internet. It was apparently designed to distract them from reading the young adult books that also happen to be there.
Two things kept getting in the way of my carnal desires: God and Tourette’s.
For Mormon boys, the sixteenth birthday is a milestone. For me it meant the great quest to rub mine against hers. Now I could date. “Getting some” probably isn’t what you’re thinking. To a young Mormon boy, “getting some” meant a peck on the cheek, a hand to hold, someone to breathe hot air on your neck in a car late at night…I wasn’t choosy about the specific acts of debauchery.
The primary goal for a Mormon is to marry a worthy spouse in the temple. Marriage is part of the Plan of Salvation. I’d been taught that, before coming to earth, we were all in the Preexistence, spirits waiting for our turn to live on the third planet as corporeal beings. We knew we’d be tested to prove ourselves worthy of returning to the highest kingdom of Heaven. There are three tiers in Mormon Heaven—telestial, terrestrial, and celestial.* The key requirement to vaulting past the terrestrial and telestial heavens and attaining celestial exaltation was finding that spouse.
The grand search for a partner starts for most at age sixteen, when we’re first allowed to date. By then we’ve supposedly learned enough about right and wrong that we won’t get each other pregnant the first chance we get. Besides, it had been drilled into us endlessly that premarital sex is a terrible sin; only murder is worse. You can repent of most sins by making restitution, but you can’t bring a dead body back to life, and you can’t restore your virginity. We are made in God’s image and God is no fornicator. The importance of remaining pure and unspotted in the eyes of God was underscored by our Sunday school teachers’ constant reminders: “Nothing good happens under a blanket” and “Sleep with your hands above the covers.”