My life with epilepsy — so far
They tell me that my epileptic seizures last about two and a half minutes. I have been observed freezing, like in a game of statue. A frozen body with a frozen stare. I’m told that the electrical activity in my brain unravels until it becomes a miniature tempest. I envision it like a solar storm that knocks out communications on Earth, the way my body knocks out communications between my limbs and my nervous system. My limbs, having lost the script read out to them continuously by my nervous system, give up on instructions from biology and surrender to gravity. I collapse.
Then the seizing. From a video recorded during an all-day observation at home, I can see what it looks like. My face, having lost all trace of life, responds jerkily to the motion of my stiff, shaking body. A body possessed by a shuddering machine, like a tree shaker — a machine without compassion. My face and lips go blue as my body almost seems to forget what it needs to do to keep me alive. After what seems like an eternity to those observing me, a period of calm. As if someone rebooted a misbehaving computer. I come to, hazy in my consciousness.
It is a strange disability that I can scarcely detect or retain in memory. A mute person is reminded of their disability anytime someone speaks. A person with an amputated leg perceives it each time they move. I have a condition that when it is in full body-seizing flare-up, everyone but me can see. One whose manifestations traumatize my parents. All I get are vestiges, the aftermath — the cut on my forehead after I struck a piece of furniture when my body’s operating system stalled. I get a throbbing headache and feel extreme drowsiness after the electrical storm in my head subsides.
In some ancient cultures, epileptic seizures were considered a form of trance in which the seized communicated with the gods. It was a gift from the divine, a blessing. My “blessing” requires that I swallow a handful of pills daily to minimize the chance of grand mal seizures, the spectacular physical events that terrify my parents. The pills are supposed to slow down all electrical activity in my brain to avoid malfunction — like tying together one foreleg and one hind leg of a horse to stop it from running away. To hobble it enough to allow it to graze. Some of the pills are supposed to help with petit mal seizures. These happen when I blank out for about 10 seconds at a time, several times an hour without any jerking or collapsing. These are 10-second snippets that my teachers put down to daydreaming. The people around me are none the wiser; they don’t miss these bites of my existence that are pilfered by the monster inside me.
In the sugarcane fields of western India, a husband-wife harvesting pair is called a full sickle. The man cuts the cane with the sickle, and his wife ties the bundles and carries them to the edge of the field. As daily wage laborers, the man gets paid for both of them. If the man dies, his widow cannot find work; she is deemed a half sickle.
My childhood dream was to be a pilot. I dressed up as a pilot for Halloween and career day in elementary school. I have had a collection of miniature model aircraft arranged in my room since I was 6. My first seizure and the subsequent diagnosis axed that dream. It’s as if epilepsy has tied my hands behind my back. It’s taken away keys to several doors I’ll never have the chance to open. Epilepsy has turned me into a halfsickle boy.
When I begin to feel sorry for myself, I am reminded of just how fortunate I am. There are epileptics who suffer for years while their physicians struggle to find drugs and dosages to tame their monsters. I am fortunate that the worst impulses of the monster inside my head are largely restrained. My brain is also mostly able to extrapolate and reconstruct the 10-second snippets that I lose to petit mal seizures. I’ve read that listening to certain pieces of music reduces seizures in some people. When I play my violin, the monster inside me seems to fall asleep. I play in my school orchestra and a community youth orchestra and am not known to miss entrances. I don’t know why, but for this I am thankful, half sickle or not.