The Platform That Reminded Me I Was Not Alone

I have lived with epilepsy since I was five years old. What started as a simple ear infection turned into encephalitis that traveled to my brain and left me in a medically induced coma. The doctors told my parents I might never walk again. I survived — but epilepsy stayed with me, and it has shaped every chapter of my life since.

For nearly fifty years, I have navigated seizures, limitations, loss of independence, and the particular kind of loneliness that comes from living with a condition most people do not fully understand. I know what it feels like to be in a room full of people and still feel completely alone in your experience.

There were years I kept my story quiet

I thought that if I spoke about my epilepsy too openly, it would define me in ways I could not control. I was afraid of being seen as less capable, less professional, less whole. So I built walls around the hardest parts of my journey and tried to outrun them with achievements instead.

That changed the day I finally decided to tell the truth

I started writing about what epilepsy had actually cost me — the fifteen years I could not drive, the workplace seizure that led to my termination thirty minutes later, the bathtub incident at sixteen when my father kicked down a locked door and pulled me out of the water, the nights I lay awake wondering if this was all my life was ever going to be.

And something unexpected happened.
People found me.

A stranger wrote to tell me they found my book at a Barnes and Noble and that it had saved their life. A parent reached out to say that reading my story helped them recognize that their child was having a seizure. Thousands of letters and messages from people who had been carrying their own version of my story in silence — and who finally felt less alone because I had been willing to speak first.

I testified before the United States Congress on disability rights and job discrimination because I refused to let what happened to me happen to others without a fight. I built a podcast that now reaches over 1.3 million listeners worldwide. I wrote twenty books. I became an epilepsy advocate not because it was the path I planned but because it was the one my life kept pointing me toward.

Your truth is powerful

What I know now after nearly fifty years is this — the most powerful thing any of us can do is tell the truth about what our health journey has actually looked like. Not the polished version. Not the version where we have already figured everything out. The real version. The one with the fear and the grief and the unexpected moments of grace.

Because somewhere out there someone is sitting alone with the same diagnosis, the same fear, the same feeling that nobody could possibly understand what they are going through.

And when we share our stories honestly and without apology, we give that person something medicine alone cannot provide.
We give them the knowledge that they are not alone.

That is why communities like this one matter so deeply to me. And that is why I will never stop telling my story — because the person who needs to hear it is always worth showing up for. 💜