All Through the Words of a Song

By Ruby Faith Hentoff

I didn’t think anyone understood me… until I met someone who had been in the exact same place.

“What’s it like when you’re having a seizure?” 

This is a question I was frequently asked during my four-year struggle with epilepsy. However, the shock and terror of the moment were impossible to put into words. I didn’t know a single person who went through the same experience until one mid-July afternoon.

“And my heart is pounding, and my eyes are burning, and suddenly everything, everything is… quiet,” I sing as Ed’s hands roll across the keys. He’s accompanying me as I practice “Quiet,” a tune from Matilda I’d chosen as my solo for a theater workshop. I haven’t sung it in years, but now, having been seizure-free for an entire six months, the lyrics hold a different meaning.

When I reach the chorus, I pause. “This song reminds me of something,” I say to Ed, who I’ve worked with for years but never had a personal conversation with. I tell him about the time I fell unconscious in a pool, my recent brain surgery, and the constant fright of not knowing when a seizure will strike next; the heat and momentum building up to the second everything falls silent. “Heart pounding, eyes burning, everything turning quiet.”

And my heart is pounding, and my eyes are burning, and suddenly everything, everything is… quiet…

“I had seizures, too,” he nods, glancing aside in reflection. I’m speechless. I’ve never met anyone else with epilepsy before, and I’m suddenly dying to know how much we have in common.

“How long has this been happening? What type of epilepsy?” My mind is flooded with questions. We compare our narratives and share how it feels to be trapped in a seizure. When he describes a feeling of amnesia, unable to speak or hear, tears spring to my eyes. Finally, someone understands me! It fills me with warmth, reassuring me that I’m not the only one who “knows what it’s like.” I’m relieved when he tells me that he hasn’t had a seizure in years, but he can’t be sure if they’re gone for good.

“I doubt they’ll return,” I assure him, praying that he remains unharmed. After having my head cut open while awake, I’d be devastated if my surgery had no lasting effect. Ed, on the other hand, received no treatment of the sort. “If you haven’t had one in years, then why would they randomly come back?” As I ask this, I know the answer. There are many triggers for seizures, from heat to stress to lack of sleep. 

“I hope not,” he says after a long pause.

The conversation lasts for five minutes without a single lull. Eventually, we’re finishing each other’s sentences. When it’s time for the next actor to rehearse, I leave with a sense of tranquility and satisfaction that I’ve never felt before. Additionally, it reminds me that Ed and I aren’t the only ones who have suffered from seizures. Over three million people around the world are affected by the same disorder. But despite it being so common, I’ve never personally met anyone in the same situation. I finally found someone else to connect with, and it was all through the words of a song.

Process

Last February, I was applying for a summer program called Simon’s Rock Young Writers Workshop. The prompt was to write about a time when words were meaningful to me. However, it was not allowed to be edited by anyone but myself. I was stuck, and when I explained everything to my Girls Write Now mentor, Brie, she immediately asked, “How about the time you spoke with that pianist, the one who had seizures too?” It was brilliant, and although it was nerve wracking to submit my essay after self-editing, it paid off in the form of an acceptance letter.