I stopped hiding my seizures at school after doctors finally took my disorder seriously

I was running track in gym class on a summer afternoon when, suddenly, my body started doing something strange. At 13 years old, I could document my existence through strange bodily events: My breasts were ballooning at different rates, hair was appearing in mysterious places, and my face was a volcanic acne hellscape. But this moment was stranger still. I felt a brief tingling in my ankles; then, all at once, the left side of my body became paralyzed while the right side seized. My right shoulder rose towards my ear, and each body part followed its path upwards. This sudden seizure lasted all of three seconds. Not wanting to stand out, I ignored the startling events and kept running.

When September rolled around, the episodes had grown in frequency; it wasn’t uncommon for me to have upwards of 20 seizures a day, but I chose to not care about my mysterious movements. In typical teen fashion, I was instead consumed by my burning desire to be cool at the new school I’d soon be attending. I had been bullied out of my last school, before kids even had a chance to notice my developing seizure symptoms. I was a perfectionistic student with obsessive study habits, and fulfilling the desire to be a flawless student had come at the high price of social acceptance. In other words, I was a massive dork with some extra obsessive pizzazz on the side, and kids have an amazing ability to identify and point out these traits with no regard to the art of subtlety. Traumatized by my previous social exile, I was determined to fit into this school—but I was fairly certain that half-body spasms and paralysis would not fit under the umbrella of middle school popularity.

Thus, I concluded, concealing my episodes was crucial.

I quickly realized that would be difficult. On my first day at my new school, I sat in homeroom with my new peers when, one by one, students were called to the front of the room to receive a locker key. As the new kid, I was already receiving more glances from other students than I would have liked when my name was announced. I took a breath, stood up, and immediately had a whacking seizure. I limped to the front of the room, dragging my paralyzed leg along, with half my mouth gnarled in a stroke-like grimace. I took the key and sat back down.

“Fuck,” I thought to myself. A few moments later, I was called up again, this time to receive a separate key for my gym locker. “Why the hell do we need two separate lockers?” I grumbled as I got up to perform my Igor-esque movements all over again. Though I cannot imagine this went unnoticed, my teacher and classmates were kind enough to pretend that nothing was amiss; however, I wasn’t confident that their polite silence would last long.

Determined to hide the seizures, I spent days practicing how to move, talk, and eat through them. I figured out how to continue actively listening in a conversation while tilting my body ever so slightly to mask my shoulder rising up; I would lift my hand up to my mouth as if I were about to cough to cover up my curling lips. It was a precarious act, but for a while, it seemed to be working.

Of course, my parents were upset by my daily seizures, but my mother recognized the movements. The same seizures developed in my father when he was a teenager. He had grown out of them, but she had seen his episodes occur a few times. It was actually my father who was on the precipice of hysterics; he was convinced that I had a brain tumor. My mother and I raised our eyebrows at each other, and we set about finding a neurologist.

Back at school, I already felt immense pressure about pretty much everything other than the seizures. I longed to be liked by my classmates, and I was even somewhat successful at that. At the same time, I assured myself that my desire to fit in could not come at the price of my grades.

I obsessively studied, socialized, and secretly seized. But it was only my first semester, and I was already getting tired.

On a November afternoon, I left the cafeteria with a pack of classmates, thrilled to be part of a chattering group of friends. But I was quickly brought back down to earth when we neared the top of a steep staircase and my ankles began to tingle. I attempted to push through it, but the episode was powerful and too sudden. The left side of my body froze while the muscles on my right side twisted and strained against each other. I felt my balance deteriorate and made a split-second decision to avoid becoming a human avalanche tumbling down the crowded staircase. I launched off my paralyzed leg fast enough to tip myself on to the top of the stairs, awkwardly but successfully hiding what exactly had occurred.

After so many attempts to control my body, I knew that hiding my seizures was not a sustainable way to live.

***

Our quest to find a neurologist was an education in the fact that, often, doctors hate saying the words, “I don’t know.” For example, after witnessing one of my dramatic seizures, a doctor told me that it was simply a “nervous tick” and nothing to be concerned about once the usual tests didn’t reveal a cause. We had to reject a number of unhelpful doctors until I ended up at a pediatric facility, Great Ormond Street Hospital. The head neurologist, Dr. Neville, came out to greet me. He had laugh lines and a genuine smile. After a few tests involving a bizarre amount of tapping my nose, he quickly ruled out my father’s brain tumor fears. We all sighed in relief and I stood up to go to the restroom. Immediately, I was hit by an enormous seizure.

After due consideration, Dr. Neville sat me down to discuss my diagnosis. “You,” he announced, “have Kinesigenic Paroxysmal Choreoathetosis.” I looked at him blankly. “It’s uncommon enough that they haven’t come up with a short name,” he winked. “But we know it’s on chromosome sixteen.”

Dr. Neville told me that only a handful of people in the world had been diagnosed with this condition; the majority were in Taiwan, and then there was my dad and me. Additionally, most of those with the condition display obsessive, perfectionistic behaviors. This insight would quickly lead to my diagnosis of obsessive-compulsive disorder. Dr. Neville prescribed a medication, scheduled a follow-up, flashed a warm smile, and set me free.

Armed with a diagnosis, I decided it was time to open up to my friends about my condition.

Sitting with my friends at a table in the cafeteria, I declared, “I have Kinesigenic Paroxysmal Choreoathetosis.” There were gasps. “Are you going to die?” one person exclaimed, having no idea what the disorder’s name meant. After explaining that the diagnosis was not deadly, I was delighted to find that my classmates didn’t give much of a damn about my condition, as long as I didn’t hurtle down (or up) staircases. The additional OCD diagnosis helped me figure out yet another piece of my personal puzzle, and I finally managed to start tackling my obsessive behavior.

Most of all, I realized that kids at school thought I was at least kind of cool, regardless of any seizures and compulsions. Slowly, I started to trust my friends, develop a greater sense of security, and, eventually, gain control over my condition. By September the next year, I was actually excited to go back to school.