Jenna was a first place winner of a 2021 NJCTS Scholarship Award.
This was the essay she included with her application.
You’ve rested on my walls for 2,555 days — the intense version of you that forces visitors to pause when they enter my room, needing time for their eyes to adjust.
Yet, unfortunately, seven years’ worth of National Book Festival posters, motivational post-its, and homemade collages have begun to fade your bright yellow presence on my wall.
So, after months of deliberation, I sit before you with a bucket of blue paint, ready to pull the plug. But, before you go, I want to say goodbye.
Before you came around, it seemed as if we were destined to meet. A precocious black girl with a penchant for big words and even bigger hair, I, like you, boldly demanded space in every room I entered. As I trotted across the country, family members in tow, signing books, and giving presentations on diversity to little brown girls like me, I proudly spoke without constraint. On the first day you arrived in my life, I remember a warmth came over me as I looked up at you– two like souls coming together, reveling in our light.
However, two years after our relationship began, Tourette Syndrome joined us.
It came complete with flailing limbs, uncontrollable yelps, and a loss of agency within my own body. I recall countless nights lying on the kitchen floor, unable to regain control. If I opened my eyes, I could almost certainly find my mother, looking on in desperation, as she grasped at something, anything, to help her child. However, in the mind of a twelve-year-old, parental fears couldn’t compare to middle school students’ judgemental leers.
You know, I’ve always admired how you, in your all-encompassing glory, never mute yourself. Even in your most docile forms, you maintain an ever-present glow, demanding to be seen.
As my tics thrust me before awkward stares and sideways glances, my own glow began to diminish. My formerly wild mane flattened into a brittle bob, struggling to hold onto life.
In an effort to understand my disorder, I began to search for an outlet. During this search, I found the New Jersey Center for Tourette Syndrome.
As a Youth Advocate, I was given the opportunity to travel throughout the state to speak with students about my experience with Tourette. Before my first appearance at a local public school, I stopped the principal in passing:
“Will I get to meet the girl who wanted me to come speak?”
“She’s pretty embarrassed about her tics, so she wanted to stay anonymous,” the woman responded casually, before walking off.
Without much thought, I returned to finalizing the last lines of my speech and checking my reflection, before finally walking out.
When I emerged from the wings of the stage, I spotted a young girl, shoulders slouched and head hung, sitting in the back of the auditorium.
In that moment, preoccupation shifted to recognition, and my transformation began.
I no longer cared about whether the crowd would judge me. It wasn’t my job to perfect a manicured image of myself. It was my job to ensure that the little black girl sitting in the back row knew that she wasn’t alone.
The sense of belonging I sought could not be found in the motivational post-its you’ve come to know so well. It could not be found between the plates of a hair straightener. It could not be found through a muted voice or a dimmed light.
In your golden hue’s most recognizable forms, your purpose is not to illuminate yourself, but rather cast light onto others, allowing them to feel seen.
As the years have passed, I, too, have worked to live that purpose, informed by my experience with Tourette Syndrome and NJCTS. Whether I’m presenting to elementary school students about Tourette, pairing young BIPOC women with their ideal mentors, writing a short film, completing late-night research for an LGBT History Project post, or protesting in front of City Hall, my work stems from one simple belief: we all deserve to be seen.
So, in reality, this isn’t goodbye. While I may no longer see your presence on my walls, I’ll carry it with me, always.
