As I ponder how it all started, I’m reminded of something a friend said once. “I heard you were a sickly child.”
Strange, I had never thought of myself as “sickly.” But it was easy to see how true that statement was.
By 2, I had developed epilepsy. Thirty years later, I was still living with it. I vaguely recall having my first seizure in the kitchen. It’s a memory that comes to me as hazily as a dream. I have no proof that it happened there. My parents were out to dinner, we had a babysitter, I’ll never know.
What I can tell you is that growing up with epilepsy breeds fear. I didn’t have my second seizure until I was 13. In the years in-between, my childhood was largely idyllic, full of neighborhood friends, childhood adventures, a loving family. But the fear of having a seizure could hijack everyday moments, not just for me but for my whole family.
The opportunity for a seizure was always there, lurking. So was my fear. It wasn’t overt or constant, more like a quick flash.
My parents shielded my eyes, ever so quickly, whenever an ambulance sped by. “Don’t look,” they always said. It was the same with concert strobe lights. On hot days it could feel like the world was caving in. Like that time in Pawley’s Island when I had a “spell” reaching for the orange juice. I swayed back and forth, went blank, fell to the floor. My dad, a doctor, was summoned from the beach.
In playing tennis, my favorite sport, I often got overheated. When the lights flashed in my eye I knew to rest. At such times your anxiety grows, your tongue turns to cotton, your mouth tastes tinny. You brace yourself for the worst, whether it comes or not.
The opportunity for a seizure was always there, lurking. So was my fear. It wasn’t overt or constant, more like a quick flash, an acquaintance who breezes in and out. Interestingly, my identity was never rooted in epilepsy. I remember feeling shocked by this when I finally realized it decades later.
You’d think having epilepsy my whole life would define me. In many ways it did. But seizures didn’t shape me as much as all the other stuff did: medicine, frequent doctor visits, blood tests, EEGs. These were the things that subtly seemed to whisper, “You’re different from other kids.”
Ingesting pills was part of my daily routine, not for a while—forever. I took pills the way others have a cup of coffee in the morning or brush their teeth before bed.
As a child, I recall standing on my tippy-toes, watching my mom crush three Phenobarb pills with a spoon before mixing them with applesauce (it couldn’t disguise the bitterness). From my toddler days to college and beyond, the pills were always there. They prevented my seizures—and the value of that cannot be overstated.
When you have epilepsy, fear is quickly instilled in you—by the disease, concerned loved ones and doctors. It’s not malicious, just part of it. Doctors believe that having a seizure is the worst of all evils for their patients.
For many it is.
For me it was.
Until one day it wasn’t.