Right away I knew.
Of course, you never really know, do you? Not with epilepsy.
But I knew.
For the first time in eight years, no aura. I was walking out the door, my hand on the knob, when I realized it. There came a whisper, almost a gasp, and I heard myself say, “Wow.” Had epilepsy cleared my system? For five months, instinct had said I was traveling somewhere — to a place where the sun rises within you.
It was gonna be the sunrise of my life. But this destination looked like nothing. Felt like nothing. It shouldn’t have surprised me. Epilepsy is an invisible illness. Even in remission.
Outgrowing it at 33, I hadn’t heard of that. People tend to outgrow it in puberty, not 20 years later. Yes, I had suspicions. They were written in sand. The internal monologue went like this: “I’ve outgrown epilepsy. I’ve outgrown epilepsy! Haven’t I?”
At 13 and 18, I tapered off under doctor supervision — stayed off for 7 and 10 days. It didn’t last, but the hope did. Once you taste hope like that, it stays with you forever. After another seizure at 20, Dr. Sullivan looked me in the eye. “At this point, you probably won’t outgrow it.” I nodded and let him have his say. He’s not God, I thought. Just a man.
Over time, it mattered less. By 2004, anticonvulsants had been part of life for 31 years. Sleepovers, all-nighters, summer camps, career moves. Through it all, the doses kept coming. Sometimes the drugs made me forgetful. With any doubts, I took them again. Better that than not at all.
Nothing scared me more than the prospect of a tonic-clonic seizure. It was weird, because I’d had so few of them. And yet daily pill taking seemed to project another. The drugs reinforced the notion that seizures not only were possible but likely. So went the script etched upon my brain. With each passing year, the words became more engraved. I absorbed them as I did nutrients — completely and unknowingly.
With Dad’s career, our lives were steeped in Medicine, just as mine was steeped in the lowercase version. If there was enchantment in my youth (and there was plenty), Medicine, and medicine, only fueled the fable. As kids, we played “Doctor,” not with toys, but with Dad’s stethoscope and blood pressure cuff. When a friend pumped the band too tightly on my brother’s arm, they got it off in the emergency room (the real one).
In the world of medicine, Mom and Dad understood the importance of taking it. They instilled that belief in me. Prescriptions were part of childhood, and by all accounts, childhood was idyllic. Much like fairy tales, pills became a bedtime ritual. I can’t say I cherished it. But the Brothers Grimm scared me more than the Phenobarb did.
From my tip-toes, I watched Mom crush the tablets with the back of a spoon, mix them with applesauce. Such everyday moments were infused with love, and it escaped in her voice when she said, “Here you go, honey.” Checkers was a puppy then. She stood at my feet, her brown eyes growing big as if the blend were a treat. By 9, I was swallowing pills whole, washing them down with a glass of water. When my older cousin said she couldn’t do that, I swelled with pride.
There’s a big difference between coming to epilepsy as an adult and coming to it as a 2-year-old. When you’re older, you have to grapple with “life before the diagnosis” and “life after.” When you’re a toddler, there’s just life. It’s a life on anticonvulsants. In three decades, I experienced three tonic-clonic seizures. That was the tradeoff, and it was a great one. If I took the pills, I lived seizure free. Simple as that. When I stopped taking them, the outlook became bleaker.
So I didn’t stop.
Which made the decision that much more unlikely. That I came to it at all shows how much had changed.
Later, Dr. Sullivan would call me “reckless.”
It only looked that way.
Instinct drove it, so I had to listen. The aggressive style looked nothing like the cautious approach I’d honed in the world of Medicine; I barely recognized myself at the wheel. Medicine is a realm of personal responsibility, where you consult your doctor on important decisions, and if you can’t do that, you consult your dad.
I planned to do neither.
It had everything to do with the negative thoughts. If not for them, I would have let it all go. When they started messing with my head, I opened my mind to alternatives without knowing what they could be.
By September, I’d been biding my time for a year. Waiting for a moment to pounce, I never dreamed it could come so soon. I found myself with a rare opportunity — to prove to myself that I wasn’t crazy. I wasn’t about to blow it.
Two months, I told myself. Two months without an aura. After that, let the tapering begin.