Tourette syndrome is one of the most misunderstood neurological syndromes. Meet an award-winning artist who is using it as musical inspiration.
Posted in , May 20, 2015
Freak. Someone with something odd about their behavior. That’s what people called me behind my back. My doctor had more or less said so. That’s what I’d be the rest of my life.
Not that you’d think it if you’d just met me. Regular teenager, you’d think. But then my eyes would start blinking. My shoulders would twitch. My body would shake. Maybe I’d hit you. I couldn’t stop myself.
Lots of teens hate their bodies. I couldn’t even control mine! I never knew when I was going to do something weird, or just totally awkward.
School became a challenge. I didn’t want to go to church either, but I come from a family of strong believers and my parents are pastors. Sitting in the pew—I had to take a pillow to keep my head from banging against the back of the seat—I felt all eyes on me. My actions were so spontaneous and volatile, they caught everyone off guard. I just wanted to go home. Shut my bedroom door, crank up the music and crawl under the covers. I wanted to stay there forever.
It all started when I was nine years old. Up till then I was a happy little girl. My parents loved jazz and gospel, and our house was full of music. I learned to play guitar when I was young, and every week I sang at church with my older sister, Morgan. I loved that feeling of helping people get closer to God through music.
One day, I noticed my arms and legs bending and twitching. I tried to keep still but I couldn’t. Most kids are restless, but this was different. The jerks were all over the place.
At first I thought it was just some phase, since the twitches stopped after a minute. But they came back and got worse. Eventually I was punching myself and sometimes other people. I’d be playing with my sister, and all of a sudden my fist would strike her. “I didn’t mean to!” I’d cry.
At stores I’d knock over stacks of CDs or send mounds of apples tumbling to the floor. I stopped playing and singing in church. My mom homeschooled me.
At last, after a bunch of tests, I got a diagnosis. “I’m sorry, Jamie,” a neurologist told me. “You have Tourette syndrome. It’s a neurological disorder that causes sudden involuntary body movements. Symptoms come and go, but this will be part of the rest of your life. Medication can help suppress the tics, but it won’t make them go away.”
I cried the whole way home. I felt betrayed by God. I’d been a good kid. I loved our church. I’d sung my heart out for God. And this was what happened?
The minute we got back from the doctor’s office, I grabbed Dad’s laptop and locked myself in my room. Tourette syndrome, I typed into Google. The results made me want to die. Story after story about...freaks. There was no other word for it. Someone had even made a YouTube series about himself called Tourettes Guy. Videos of him shouting and using profanity and banging his head against the wall. Was that going to be me?
I curled up in a ball on my bed. “God, please take this disease away,” I whispered. “My life is over unless you do.”
Medication calmed my tics. But it turned me into a zombie by day and a ball of restless energy at night. I lost hair and gained weight—a girl’s nightmare. My family tried to cheer me up but nothing worked. Dad would come in my room, put on his favorite jazz tunes and dance around like a goofball. Mom painted my room crazy colors—hot pink and purple with yellow polka dots—and painted the hallway outside my door sky blue.
“Since you don’t go outside much anymore, we’ll bring outside here,” she said. I didn’t care.
My only comfort was music. I stayed up late writing lyrics and strumming my guitar. The music reminded me of everything I’d lost. But it helped to write songs about Tourette—and loneliness and helplessness. I wasn’t bringing anyone closer to God. But it was better than watching Tourettes Guy.
One Sunday at church—I was a teenager by then—I was sitting in my pew, doing my best to keep my head against the pillow behind me. Dad was at the pulpit, swaying with the praise band. I closed my eyes against the sight of our congregation standing and waving their arms. As usual, I was sitting, and I hated it.
The song came to one of my favorite parts, words from Psalm 30: “Weeping may endure for a night, but joy comes in the morning.” I couldn’t help focusing on those words. They were so beautiful and so comforting. For a moment I forgot about holding my body still and just let the music take me.
Weeping may endure for a night. God knew that was true. I pictured myself in my room, crying and playing my guitar. Something about the image stuck with me. And then I realized. All that time I’d been staying up late writing songs, I hadn’t been focusing on my body at all. My whole heart was in the music. There was one thing Tourette hadn’t stopped me from doing. Singing.
But joy comes in the morning. I opened my eyes. The congregation was still singing and swaying. Was my life really over the way I’d been telling myself? My love of music sure wasn’t over. And music—especially in my family—was a source of life.
The song rose and I felt my body relax. I unclenched my fists and lifted my hands up shyly. With my voice trembling, I joined the song. Mom looked at me. I smiled at her and kept singing.
A few days later, I sat at my computer in my room. With a small webcam Mom and Dad had bought me, I made a five-minute video about my symptoms and what it was like to be a teen with Tourette. I put the video on YouTube. I called it TeensWTS—teens with Tourette syndrome. It was like my answer to Tourettes Guy. Me saying, Hello, world. I’m not hiding anymore.
I checked back a little later. My video had some views! Even some comments. I was nervous about what people might say. But almost all the comments were positive.
“You are a very strong girl,” someone wrote.
“I myself suffer from Tourette,” another girl wrote. “I think it’s really cool you’re on the web.”
“You will change the world,” a girl named Anna wrote.
I’d told my deepest secret to the whole world. And people were supportive!
I made more videos, answering questions people asked online. Like how to tell your friends you have Tourette. Or how to deal with tics in class. I even made one with my own parents for other moms and dads on how to parent a kid with Tourette.
Someone at the national Tourette Syndrome Association noticed my videos. They invited me to come to Washington, D.C., to meet Hillary Clinton and the late Senator Ted Kennedy, who were working on education issues in Congress. I urged them to pass a bill providing assistance for public school students with Tourette.
The trip to D.C. boosted my confidence big time. I was ready to try something riskier. One evening after dinner, I sat down in my room, tuned my guitar and turned on my computer. I took a deep breath and started playing one of the Tourette songs I’d written during those long, dark, miserable nights. I was a little nervous when I uploaded it.
The comments came in almost immediately. “This is awesome!” “Thank you, Jamie!” “You inspire me to love myself even though I have Tourette.”
That gave me the confidence to post more songs. I even recorded myself singing a mash-up of 12 songs by my favorite Christian recording artist, TobyMac. People loved it. One day, I looked at my Twitter feed and saw a message: “Hey, let’s talk about music.” It was from TobyMac! The TobyMac. I screamed and ran to tell Mom and Dad.
Mom and I met TobyMac in a coffee shop in Nashville. Two weeks later, at age 18, I was signed to his record label. My first single was called “Hold Me.” As in: God holding me through the dark night of my Tourette syndrome. The song rose to number three on the Christian music chart and was nominated for a Grammy. More than 8.5 million people streamed it on YouTube.
Since then, I’ve been a nominee for top Christian song at the Billboard Awards and named new artist of the year at the Dove Awards. I even landed a role in the movie Grace Unplugged. I performed the whole thing without a single tic. Last year, I released my second album, Ready to Fly.
Maybe if my path to a music career had been easier I’d be giving myself credit for all those accomplishments. But I don’t take credit.
It was God who knew all along that Tourette syndrome—the thing I was most ashamed of—was really my greatest source of strength. He didn’t make my tics go away. He knew my songs would resonate because Tourette made me dig deep. My weeping endured for many nights. And it gave me wisdom.
It’s not like my symptoms have disappeared. I still twitch onstage. Once, at a traveling worship expo for teen girls, my vocal cords froze up and I almost lost control. But I kept singing. The audience cheered! “You showed those girls you’re still fighting,” one of the other performers said to me.
That’s what I sing about now: the love that makes my weakness my strength and turns my dark nights into the brightest of mornings.
That’s why I’m a fighter!
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