From Seizures to Success: How Epilepsy Became My Greatest Teacher — Part 3 of 5
There is a shoebox sitting somewhere in my memory that I will never forget.
It was not a fancy box. It was not carefully labeled or neatly organized. It was an ordinary shoebox, the kind you slide under a bed or stack in a closet without thinking twice. But inside that box was something extraordinary — three hundred and four hundred letters, handwritten and typed, from strangers across the United States and Canada who had read my words and felt, perhaps for the first time, that someone finally understood what they were going through.
That shoebox was the beginning of everything.
The College Student Who Wrote to Washington
I want to take you back to a chapter of my story that I have rarely told in full — because it is the chapter that taught me something I now believe with absolute certainty:
Your message does not have to be perfect to change someone’s life. It just has to be honest.
I was in college, navigating the particular kind of exhaustion that comes not just from late nights and heavy coursework but from a body that was fighting itself at the same time. The stress of studying, the disrupted sleep, the pressure of grades — all of it was triggering ongoing seizures that made every day feel like I was climbing a mountain that kept getting taller.
I felt completely alone.
Not because the people around me were unkind. But because epilepsy was not something anyone talked about openly back then. There were no support groups on every corner, no online communities, no Instagram accounts dedicated to chronic illness warriors. There was silence. And in that silence, a young woman with a brain full of scar tissue and a heart full of questions sat in her college dorm and decided to do something that, looking back, took more courage than I gave myself credit for at the time.
I wrote a letter to the Epilepsy Foundation in Washington, D.C.
The Letter That Started a Movement
I did not write to ask for help. I wrote to ask a question — the same question I had been quietly asking myself for years.
How do other people cope with this? How do they get through it? What do they do when the fear becomes too much and the seizures keep coming and the world keeps moving without them?
I asked the Epilepsy Foundation to publish my article. In it, I invited readers — anyone living with epilepsy — to write to me and share their stories. How they managed. How they found strength. How they kept going.
And then I waited.
The Shoebox Fills Up
What happened next is something I still struggle to put into words.
The letters came.
Three hundred of them. Four hundred. From across the United States. From Canada. From people I had never met and would never meet — people sitting in their own dorm rooms and living rooms and hospital waiting areas, people who had been carrying the same invisible weight I had been carrying, people who had been waiting for someone to ask the very question I had asked.
I read every single one.
I wept over some of them. I laughed at others. I recognized myself in almost all of them. And slowly, page by page, letter by letter, something shifted inside me that I can only describe as the sensation of no longer being alone in the world.
I put all those letters in a shoebox. And I made myself a promise.
One day I am going to write a book.
Why That Promise Mattered
Back then, the resources available to someone living with epilepsy were painfully limited. There were a handful of books — written by doctors, full of medical terminology, impenetrable to anyone who had not spent years in a classroom studying neurology. They were technically accurate, I am sure. But they were not written for the person sitting in the waiting room, terrified and confused and desperately needing to hear that life could still be full and meaningful and beautiful on the other side of a diagnosis.
Nobody was writing that book.
So I decided I would.
Not because I had all the answers. Not because I was a doctor or a researcher or an expert with a string of credentials after my name. But because I had lived it. Because I had three hundred letters in a shoebox that proved I was not the only one asking these questions. And because I believed — with the stubborn, irrational conviction of someone who has been told too many times what they cannot do — that my story and the stories of everyone who had written to me deserved to be heard.
The Man Who Refused to Let Me Make Excuses
Years passed. Life moved forward in the way it does — jobs in New York City, the beautiful ordinary chaos of building a life, and eventually marriage to the man I had fallen in love with in my very first English class in college.
He had known me through all of it. Through the seizures and the setbacks and the moments of doubt. Through every time I had started writing and stopped. Through every version of the person I was becoming.
And one evening he looked at me with the particular expression of a man who has run out of patience for someone he loves deeply, and he said something I have never forgotten.
“Would you finish that damn book already?”
I laughed. And then I sat down and I finished it.
The Book That Found the People Who Needed It
Epilepsy: You’re Not Alone hit the bestseller list. It remained a bestseller for three decades. I revised it again and again as the community changed, as the conversations evolved, as new generations of people with epilepsy needed to find themselves in its pages.
I do not tell you this to celebrate the accolade. I tell you because of what happened next.
In the early days of email — when the internet was still new enough that receiving a message from a stranger felt remarkable — I opened my inbox one morning and found a message that I have carried with me every day since.
A stranger wrote to tell me they had found my book at a Barnes and Noble.
They had been browsing the shelves the way people do when they are not really looking for a book — when they are looking for something else entirely, something harder to name. And they had pulled my book from the shelf. And they had read it.
And then they wrote to tell me:
I was on the verge of suicide. Your book saved my life. Thank you.
What That Email Taught Me About Purpose
I have thought about that email thousands of times over the years.
I have thought about the person who sent it — sitting in a Barnes and Noble, searching the shelves for something they could not quite name, finding a book written by a college student who had stuffed three hundred letters into a shoebox and made herself a promise.
I have thought about all the moments between my letter to the Epilepsy Foundation and that email — all the doubt and the delay and the years of starting and stopping — and how any one of those moments could have been the moment I gave up.
I have thought about what it means that a young woman asking a simple, honest question — how do you cope? how do you get through it? — could set in motion something that would one day reach a stranger at the edge of their life and pull them back.
And I have come to understand something that I want to share with you today, because I believe it is one of the most important things I know:
Your message does not need to be flawless to be life-changing. It needs to be true.
The book that saved that person’s life was not written by a doctor. It was not peer-reviewed or clinically validated or endorsed by a prestigious institution. It was written by a young woman who had been through something hard and had the audacity to believe that her experience was worth sharing.
That is all it took.
The Question I Want You to Sit With
There is something you know — something you have lived through, learned, survived, or discovered — that someone else desperately needs to hear.
Maybe you have been telling yourself it is not enough. Not polished enough, not credentialed enough, not dramatic enough to matter. Maybe you have your own version of a shoebox — a promise you made to yourself once, quietly, that you have been putting off ever since.
I want to ask you something directly.
What are you waiting for?
The person who needed that book in Barnes and Noble did not need it to be perfect. They needed it to be real. They needed to know that someone else had felt what they were feeling and had found a way through.
Someone out there is waiting for your version of that book. Your version of that article. Your version of that podcast episode, that speech, that conversation.
They are waiting for you to stop waiting.
What the Shoebox Taught Me
I kept that shoebox for years. Long after the letters had faded and the edges had softened with time, I kept it — because it was the physical proof of something I never wanted to forget.
You are never as alone as you feel in your worst moments. And neither is anyone else.
The act of sharing your truth — honestly, imperfectly, courageously — creates a bridge between your experience and someone else’s isolation. And sometimes, on the other side of that bridge, is a person whose life depends on knowing that bridge exists.
That is why your message matters.
Not because it is perfect.
Because it is yours.
This is Part 3 of a 5-part series: From Seizures to Success — How Epilepsy Became My Greatest Teacher.
Part 4 publishes next week: How Nature Healed What Medicine Couldn’t — the discovery that ended fifteen years of seizures.
About the Author
Stacey Chillemi is an award-winning podcast host, 20-time bestselling author, epilepsy advocate, and founder of Advisor Global Media™. Featured on ABC, NBC, CBS, and five times on The Dr. Oz Show. Her podcast, The Advisor with Stacey Chillemi, reaches 1.3M+ listeners worldwide and won the NYC Podcast Award for Best Host.