sarah slevin

The powerless feeling

I’m doing this walking fundraiser for Epilepsy Ireland because epilepsy is part of our everyday life. It sits quietly at the table. It interrupts conversations. It changes plans in seconds. It teaches you to sleep lightly and love fiercely.

Both my partner and my daughter have epilepsy.

When my daughter was diagnosed, it felt like someone had pulled the ground from under my feet. The fear is hard to describe unless you’ve lived it. You watch more closely. You listen more carefully. You learn new words you never wanted to know. But right now, thankfully, she is controlled. And that word controlled feels like sunlight breaking through clouds. It means normal school days. It means sleepovers without as much fear. It means breathing a little easier.

But epilepsy is unpredictable.

My partner had been stable for five years. Five steady, hopeful years. We allowed ourselves to relax. We made plans. We trusted the calm.

And now we’re back in the storm.

Watching someone you love become unstable again is exhausting in a way that doesn’t show on the outside. There’s the practical side, medication reviews, appointments, safety measures. And then there’s the emotional side, the constant edge of “what if,” the waiting, the worry, the quiet resilience you have to build every single day.

Epilepsy doesn’t just affect the person who has the seizure. It affects the whole family. It changes how you travel, how you sleep, how you celebrate, how you plan. It can bring fear, frustration, guilt, and helplessness. But it also brings strength. Patience. Perspective. A deep, protective love that is hard to put into words.

That’s why I’m walking.

I’m walking for better supports.

I’m walking for more awareness.

I’m walking for families who are newly diagnosed and terrified.

I’m walking for stability to return.

I’m walking because doing something feels better than feeling powerless

Reasons

I’m walking because epilepsy can shrink your world.

Appointments. Medication changes. Risk assessments.

Walking stretches it back out again.

I’m walking because control today is precious.

And because losing control is frightening.

I’m walking because my daughter deserves a future where epilepsy is understood, supported, researched, and talked about openly.

And my partner deserves the same compassion and resources as he navigates being uncontrolled again.

Epilepsy Ireland stands in that space between fear and facts. They offer helplines, community, education, advocacy. They turn confusion into clarity. They remind families like ours that we are not isolated islands.

And some days, that reminder is everything.