I've been afraid to post this one.

It seems a bit unfair of me to write every week again without providing some sort of background on what makes me tic. 

Okay, that's my favorite joke to make about myself. I even included it in my Twitter handle.

I've been sitting on an essay I wrote in college for a while now. I've never been ashamed of it; quite the opposite, actually. I suspect my reasoning for keeping it to myself is that it was published in the 2016 edition of Northwestern's literary journal, and I get self conscious when I talk about it because then I have to mention that it won first prize in the nonfiction category. Now it's been nearly three years since I wrote the essay, and I'd like to update it. But first, it is important to me that all of you get to read it and understand my 21 year-old brain. Slightly more grown up, nearly 25 year-old me just got a little scared and I feel like the trembling college senior walking up to read a portion of this piece to a room full of people. 

It may seem easy to share a college essay for someone like me, who has written public blogs for years. But this one is very...special to me. It's a bit longer than what I normally publish here, but please stick around. Oh, and one more thing: I will be updating this soon. 

"Clips of Different Tics"

Let me be frank. My name is Justine, I’m 21 years old, and I have Tourette syndrome. I have been ticking since age seven, but I didn’t diagnose myself until I was eleven. As I am sitting here, my eyes are squeezing shut sporadically. My teeth click together and my jaw clenches periodically. These are known as tics, and I cannot completely prevent them from occurring. There are a number of different prejudices associated with my neurological disorder, all of which I have discredited either in conversations, public speaking assignments, or research papers. My 20-year-old brother also has Tourette’s, but our cases are quite different because I also live with a mild case of Obsessive Compulsive Disorder. I function well in society, but I struggle with academics on occasion due to focusing problems. I want to tell you about a few of my experiences over the past fourteen years.

Age 7

            My pastor’s wife was my idol. She’d known me since I was a year old and I’d always tried to be just like her. I noticed that she cleared her throat all the time. I thought that was pretty cool, so I did started doing it, too. You know, like any seven-year-old might do. Most people would never have noticed that connection, and if they had, it would have been dismissed as a child’s cute attempt at copying her role model.

But it wasn’t cute. And I couldn’t stop.

Age 9

            My family drove to Colorado to visit my cousins in July. A month earlier, I had started batting my eyes to fight a case of summer allergies. It became the replacement for the throat clearing. Mama didn’t like it, and she told me so. After a week in a higher altitude, I sat in the backseat of a minivan clutching my cousin’s hands to keep her from biting her nails. “If you bite your nails, I’ll squeeze your hands. If I bat my eyes, you squeeze my hands.” We fought it for eight hours as our vehicle approached sea level.

            A few days later, a dozen and a half family members sat around the crowded dining room table at Grandpa’s house. My young stomach clenched with excitement. I called across the room to my mother. “Mom! I didn’t bat my eyes at all today!”

            But my excitement didn’t last long. And I couldn’t stop.

Age 12

            My church produced an original play with a cast of jr. high students right before Thanksgiving. I played one of the four main characters along with a couple of my best friends at the time. During one of the performances, I sat cross-legged backstage with my friend Victoria waiting for the act to end so that we could go back on. We told secrets in hushed tones. I told her about my Tourette’s, which I had named after my brother got diagnosed by our chiropractor the year before. “I never would have known,” Victoria said. “It isn’t noticeable at all.”

            But it felt noticeable. And I always knew.

Age 14

            My mom always sorted through bills and coupons at the kitchen table. Sometimes after lunch, she would pull out the checkbook and work for a while. One afternoon, I sat opposite her, blinking hard and shrugging my shoulders. She looked up at my face and noticed. “Relax, honey.”

            “But I can’t help it!”

            “You know, baseball players have tics. How do you know that you have Tourette’s? Maybe there’s another condition that makes you do those things.”

            But my brother’s disorder wasn’t questioned. And I couldn’t relax.

Age 16

            My parents’ bedroom had a television in it. Sometimes we would watch shows in there to avoid distracting a sibling still doing school or to avoid watching the news downstairs. At Christmas time, ABC played The Santa Clause 2 on a Sunday evening. I sat on my parents’ bed, watching it alone. During a commercial break, my head started twitching and my eyes batted more than usual. For about thirty seconds, my life stood still as my body kept moving. My adolescent brain told me that I could stop any time, but my nerves laughed hysterically and seized control.

            Suddenly it was over. The commercial break ended and so did my very first tic attack. I didn’t know what to call it at the time, although I now knew what paralyzing fear felt like. I told my mentor, Julie, about it in an email later that night.

            But I never told my parents. And the attacks happened many more times.

Age 17

            My house has had a craft room addition on the second story of our garage ever since we built it when I was in middle school. That winter, Mama got on a Hallmark movie kick and she sat at her sewing machine desk watching the television every time a movie played. One night, Front of the Class played. The film was based on the life of teacher Brad Cohen, who has Tourette’s and overcame great adversity to become an educator. As I stood just around the corner, out of sight of my mother, tears rolled down my cheeks and my eyes remained glued to the screen. Young Brad endured bullying from a group of cruel older boys who mocked his vocal tics and shoved him to the ground. My chin jerked upward in time to Brad’s panicked sobs as I backed quickly out of the craft room and raced to my room to finish crying.

No one ever bullied me. In fact, most people still couldn’t tell that I was different. This movie, however, was the first representation of my disorder. Beyond my brother and a guy at my church whom I barely knew, I had never stared in the face of a ticking individual. It felt good to know that other people were learning about the thing I lived with, even if my own struggle was never noticed. I promoted the film as art worth consuming.

But I couldn’t forget that no one saw my tics. And that made me feel invalidated.

Age 18

            My third online college class that I ever took in high school was Intro to Sociology. The final assignment required me to write a research paper on a topic that I found especially important. So of course, I wrote about Tourette syndrome. Through writing that paper, I learned so much about why my body refused to listen to me when I told it to stop doing silly things. The websites I pored over told me about the different labels for various disorders associated with mine, and I learned about my OCD through this research. I described various tics and provided statistics left and right. The professor wasn’t impressed with my failure to write in APA format, so I got a B.

            But I didn’t care much about my grade. And I possessed a wealth of new information.

Age 19

            My third semester of real college brought a Fantasy, Folktales, and Fabulism writing class with Dr. Martin. When given the challenge of writing a fantasy story, I created a sister and a brother who protected people in danger on a contracted position. The brother had Tourette’s, which I did not directly name but characterized quite obviously. When a monster had to be defeated, the siblings discovered that the beast was drawn to abnormalities in human beings. A stretch of imagination and cheesily written, but I was determined to finish it.

            The climax of the tale brought the monster against the brother. I wrote a predictable ending and turned it in, then drafted an alternate ending that killed both siblings and allowed the monster to prevail. I sent this alternate ending to my roommate. When she finished reading it, Brianne looked up at me and didn’t say anything for a long time. The words she finally spoke were gentle and urged me to describe my real thoughts and feelings about having a neurological disorder.

            I had written about Tourette’s many times before. This time, however, was the first that I had been vulnerable enough to actually characterize a fictional character with my own pain. Such a fragile bunch of words with an iron-based will behind them. I didn’t know what I was doing, really.

But that story opened up new possibilities for the way I thought about Tourette’s. And I could finally be free to tell my story without doubt.