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At night, I lay beside him in the small bed I had set up in his room. I needed to be close. My hand rested carefully between the pillow and my cheek, a futile attempt to grant myself permission to sleep—as if I wouldn’t hear him. As if my body weren’t already trained to wake at the slightest shift in his breath.
The echoes of his seizures lived inside me, ingrained so deeply that even in sleep, I was listening. Every gurgle. Every strained gasp for air. Every deafening silence that made my heart stop as I prayed for it to end.
Seizures—the relentless demons that invaded his body—had also carved their place into my soul. I heard them before they came, felt them even when they weren’t there.
On the nights we made it through untouched, I let myself believe—foolishly—that maybe we had won. That maybe, just maybe, we could live our version of normal.
But when the seizures came, they stole everything. And once again, we fought.
Living with epilepsy—or caring for someone who does—is more than exhaustion. It is living on the edge of fear, never knowing when the next wave will hit. It is the agony of watching someone you love be overpowered by something you cannot stop, no matter how fiercely you want to.
When you love someone with epilepsy, surrender is never an option. You fight. You learn. You advocate. And while awareness is a start, action is what truly changes lives.
Learn about epilepsy. Talk about it. Advocate for better research, better treatments, and better support. If you know someone living with epilepsy, let them know they are not alone.
And if you’re a caregiver, I see you. I am you.
Together, we can make a difference.
- Lisa Viliott
ABC Community and Marketing Liaison
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