The Red Thread

by Clara Thorne

Growing up with epilepsy is not just about the seizures.
It’s about the wires, the white walls, and the endless hum of hospital machines.
It’s about being studied more than heard.

From a young age, I was tested—prodded, monitored, recorded. I had SEGs (stereoencephalography), EEGs, hospital stays designed not to heal me, but to catch me mid-seizure. Triggers were set, rooms prepped, cameras on. I was watched like a science project.

People always assume hospitals are where you go to get better. But for me, they became something else. They were a stage for my epilepsy to perform. Doctors took notes while I lay still. I felt scared and strange inside my own body.

It’s hard to describe what it feels like to grow up under fluorescent lights, stuck between hope and data collection. I wanted answers. I wanted help. But mostly, I wanted to feel like more than just a puzzle in a lab coat’s clipboard.

And the hardest part?
Doing it all with an absent parent—physically there, sometimes, but emotionally miles away. There were moments when I needed to be held, to be told I wasn’t broken. Instead, I was told to be brave. I was told to lie still.

Even when I screamed in silence—whether from fear or side effects or frustration—the response was often clinical, not comforting.

So many treatments came and went, each one promising more than it delivered.
Pills that dulled me.
Devices that monitored me.
Specialists who looked through me.

And in all of it, I felt like a lab rat in a maze I never asked to enter.

But this isn’t a story just about pain.
It’s about survival. It’s about reclaiming voice in the spaces where I was only supposed to be watched, not heard.

That’s why I write.
My words wouldn’t come out the way I wanted because of emotion, fear, or the aftershock of seizures. So, I learned to speak through pages instead. Writing has become my rebellion and my refuge. A place where I am not reduced to test results or patient numbers.

Epilepsy is still part of my life, but it doesn’t get the final word.
I do.

To anyone else who’s ever felt like a test subject in their own story:
You’re not alone.
You are more than the machines that scanned you.
More than the silence you were raised in.
You are still here. Still feeling. Still you.
And you deserve to be heard