What Epilepsy Taught Me About Living in the Present Moment

By Stacey Chillemi | Award-Winning Podcast Host | 20x Bestselling Author | Founder, Advisor Global Media

I developed epilepsy at the age of five.

It started as an ear infection — something so ordinary my mother almost did not worry about it. Ten days of penicillin. Some rest. That was supposed to be the whole story.

Instead the bacteria traveled to my brain and turned into encephalitis. I went into a coma. The doctors told my parents that if I survived I would likely have severe brain damage and might never walk again.

I survived. But epilepsy stayed.

I am fifty-four years old now — which means epilepsy and I have been acquainted for nearly fifty years. But it was not fifty years of suffering. It was something more complicated than that. There were years of active seizures that turned my life upside down — and there were years of hard-won peace, of seizure-free mornings, of a nervous system that slowly learned what calm felt like.

This is the story of what the hard years taught me — and how I finally found my way to the present moment and decided to stay there.

During the years of active epilepsy my life felt like a roller coaster I had not chosen and could not get off. One minute I was fine. The next minute I was on the floor. My doctors asked me to stop driving. I spent fifteen years unable to leave my own home without depending on someone else to take me. I was stepped over during a seizure at work — conscious, frozen, unable to move or speak — and fired thirty minutes later. I knocked on my new neighbor’s door not realizing I was covered in blood from a fall on the sidewalk, my children watching with fear in their eyes that broke my heart completely.

The roller coaster never gave me much warning before the next drop.

For a long time I fought it by living everywhere except the present moment.

I spent years looking backward at everything epilepsy had taken from me. I spent years looking forward in fear. What if the seizures came back. What if the medication stopped working. What if I could never be the woman I wanted to be.

What if. What if. What if.

And all that looking backward and forward left me completely absent from the only moment I actually had.

Right now.

The shift did not happen dramatically. There was no single morning I woke up enlightened. It was quieter than that. More gradual. More earned.

I stopped the pity party.

That is the most honest way I can say it. I stopped sitting in the grief of what epilepsy had taken and started asking what it had given me instead. Because it had given me things — things I would never have found on an easier road. Wisdom that only comes from surviving something you did not choose. Resilience built not in a gym or a seminar but in a hospital room and on an office floor and on a sidewalk in Midtown Manhattan where I stood with nothing and made myself a promise.

I learned to accept myself.

Not the version of myself I imagined I would be without epilepsy. This Stacey. The real one. The one who has been through it and is still here.

I learned to love her.

The past is the past. I cannot go back and change a single moment of it. Not the coma. Not the encephalitis. Not the office floor. Not the fifteen years. It happened. It shaped me. And it is done.

And the future — the future I cannot control either. I can worry about it endlessly. Or I can be here.

I take the wisdom the past gave me — the resilience, the perspective, the hard-won understanding of what actually matters — and I bring it with me into the present. Not the pain. Not the fear. Just the lessons.

And then I stay here.

I work on myself each day. I take care of my nervous system, my body, my spirit. I wake up and I do not ask what if — I ask what now. What can I build today. What can I give today. Who can I reach today.

Today — seizure free and stronger than I have ever been — I host a podcast reaching 1.3 million listeners worldwide. I have written twenty bestselling books. I stood before Congress and testified about disability rights and helped change the law. I sat on the floor with my children after a seizure and drew stick figures to explain epilepsy — not from a place of shame but from a place of complete presence.

None of it came from looking backward.

None of it came from worrying about what was ahead.

It came from staying exactly here.

Epilepsy taught me that the present moment is not a consolation prize for people who could not have the life they planned. It is the whole thing. It is everything. It is the only place where anything real ever actually happens.

I have a disorder. I accept that completely.

I love who I am. I accept that too.

And right now — in this present moment — I have the ability to become and do whatever I set my mind to.

Not despite epilepsy.

Because of everything it taught me.

You don’t get to choose your cards.

You only get to choose what you build with them.

Read more of my story: staceychillemi.com/my-story

Book a free strategy call: calendly.com/carecoachingonline/booking-link

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 reaches 1.3M+ listeners worldwide and won the NYC Podcast Award for Best Host.

Explore how we can work together: staceychillemi.com/work-with-me