In July of 1989, I glimpsed my future. It wasn’t a vision so much as a yearning, one deeper than I had known. I was 18 years old, recovering from a tonic-clonic seizure. The nausea churned, a clean bucket by my bedside just in case. The mid-morning sun splashed against the walls in golden streaks, though I felt no joy.
The sweet smell of cookies wafts through Artez Thompson’s kitchen. Pumpkin spice, black walnut, chocolate hazelnut. Once they cool, he’ll glaze them with purple frosting in honor of Epilepsy Awareness Month, his busiest time of year.
The banging came in frantic blasts, each more desperate than the last. Soles slamming against wood until it splintered, the man’s shouts growing shriller by the second. It was the sound of a distraught father kicking in the bathroom door. So loud was the commotion, it woke everyone in the house. But 20-year-old Gordonnay Gaines…
For nearly 20 years Kara’s confidence had lived in the cellar, thrust ever downward by the torrent of tonic-clonic seizures that struck at 13. After a lifetime of hiding in dank corners, Kara climbed bravely, fiercely into the light. It was 2013. Her grandpa, so beloved, had died. Kara sought to make him proud.
Jacqueline Dinicola brings Cody with her everywhere. The red merle Australian shepherd is her lifeline. Dinicola, 23, of Anza, Calif., was diagnosed with epilepsy at age 4, after a tonic-clonic seizure on Independence Day. She came to the service dog world by chance, seeking a playmate for her dog Lola. From the start, Cody had other plans.
The diagnosis hit in mid-May, casting a shadow over the spring like the long winter had never ended. Thirty years old, the doctorate in full swing, and then. They came out of nowhere. Two tonic-clonic seizures three weeks apart. The first in the shower, the second in an Indiana Cracker Barrel. Sara Kennedy received her epilepsy diagnosis at age 30. Getting used to adult epilepsy has been a process, she says.
In 2011, while Prince William and Kate Middleton were tying the knot in a wedding for the ages, 16-year-old Antonia Laviolette was having her first tonic-clonic seizure. She almost didn’t live to see another day. “I stopped breathing,” Laviolette says. “My mom shouted, ‘It’s not your time to go!’ That brought me back to life.”
He crested the peak like it was the last thing standing between him and paradise. His feet so blistered he could barely walk, still he’d made the climb, every last step of it.
From atop Draupadi Ka Danda II in northern India, Siddharth Singh Kasana peered down at the world 5,700 meters below, his heart full. Beyond the reflection of his sunglasses, no one could see the tears, hot pools pressed against ice-crusted lashes. But they were there.
“I have goals, but it’s difficult to achieve them,” Sharon says.
The 42-year-old mother of three from the outskirts of London is a rarity. Twelve years of epilepsy and its treatment have dulled her memory, yet she remains painstakingly self-aware. She treasures her self-awareness as she would an heirloom. After all, she’s worked hard to retain it.There’s a rawness, a candor, in Sharon’s story that supplies its power.