Epilepsy

Over the years I’ve realized two things about epilepsy that almost no one ever talks about.
First: when you have a seizure, the people around you are worried… but they’re also curious. They want to ask questions; What did it feel like? Did you know it was happening? Could you hear us? But it’s 2025, and everyone’s terrified of offending someone.
Second: there is still a staggering amount of confusion about epilepsy.

Before we get into all of that, it’s worth remembering that epilepsy isn’t new. Humans have been trying (and failing) to understand it for centuries.

A Brief Look Back

In the 15th century, a French peasant girl claimed to hear voices and see visions from saints. In 1429, she helped lead the French to a turning-point victory in the Hundred Years’ War and saw Charles VII crowned as king. She was later burned at the stake for heresy.

Her name was Joan of Arc.

Some historians and neurologists now speculate¹ that Joan’s visions and voices might have been a form of epilepsy^2,3. Whether that’s true or not, it’s a reminder that what we now recognize as neurological was once seen as divine, dangerous, or possessed.

Fast forward to the 19th century, and we meet another mind that didn’t fit inside the usual lines. Vincent van Gogh, the Dutch painter who would go on to reshape the world of art, once wrote, “I put my heart and soul into my work, and I have lost my mind in the process.”

His paintings burst with emotion, movement and color, as if he painted the world the way his brain felt it. He experienced periods of confusion and at least one documented seizure. Some medical historians now speculate that van Gogh may have lived with a form of epilepsy^4,5 affecting the temporal lobe.

Historically, epilepsy has been seen as a sign of divine influence, possession, or even madness. While we now understand the neurological reality, the old misunderstandings didn’t disappear, they changed.

Hallucinations

As I’ve endured my own hallucinations and auditory experiences, and heck, perhaps even the kind of “divine influence” whispered about in history, I’ve felt a strange connection to those who came before us⁶. People like Joan of Arc lived through intense inner experiences long before we had a name for what the brain can do.

What most people see today is the seizure, the loss of control, the fallen body, the fear. What they often miss is the strength it takes to stay human through it all.

On November 30th, 2006, on a bus ride home, I had what I can only describe as a hallucinogenic experience. For a moment, I was somewhere else entirely; an alien world, an alternate reality. I had no idea at the time that it was a seizure.

We’re here in 2025 with more knowledge, compassion and tools than any generation before us, and there’s real good we can do for the people around us. This website isn’t just about the facts. It’s about the lived reality, and the journey that people with epilepsy go through.