Not a Lesser Life
Content Warning: Graphic language and strong imagery concerning seizures, medical interventions, embodiment, and other themes
Most parents have videos of their childrens’ proudest moments – performances, soccer goals, football touchdowns – which they share with a mix of nostalgia and pride. My parents have secreted away excruciating videos of two of my epileptic seizures. I had recently been diagnosed with epilepsy after collapsing while eating breakfast. At the hospital, based on a test with a mouthful of a name, an electro-encephalogram or EEG, I was inducted into the club of epileptics, a dubious honor I had never meant to aspire towards.
To prepare me for a full day observational test at home, electrodes were placed over exposed portions of my scalp and connected to a small fanny pack sized electronic unit. A video camera was placed next to me with instructions that it should travel with and be trained on me the entire day. About 6 hours after the video recording started, you can observe me sitting on a couch with a computer on my lap, blankly staring ahead and making a loud gurgling sound. My dad rushes into the frame and you can see me flop over on the couch as the computer does a gentle somersault against my shins and slides screen-first down to the floor. My body then starts heaving and shuddering. It seems like I’m possessed by a tree shaker. My limbs do not flail independently and it seems like my torso is doing the shuddering while my limbs follow along stiffly. It is quite eerie that my eyes are wide open with an unblinking stare. My father cradles my head in his lap. After about two minutes, my body goes limp. My father, who is quite a bit smaller than I am, then struggles to get my weight off of him and have me lie down with my head and torso on the couch, legs askew and angled down to the ground. My parents’ choice of the low couch had not accounted for a future with a tall, epileptic son.
My father keeps alternately staring at his watch and scanning my face for signs of life. After a while, I open my eyes and mumble, ‘my head hurts’. My father asks me to sleep and I drift off as I always do with my left cheek on a pillow. It’s as if we have left behind a confusing detour and arrived back at the familiar and normal.
The informal club of epileptics is a gaggle of clueless sufferers. But for the magic of video recording, we would never know what happens to us during a grand mal seizure. The name is apt since it implies a larger than life evil. It starts when the electrical activity in the brain descends into chaos, as if the proverbial bull ran amok in the china shop of ordered electrical signals that is the normal human brain. Many of the impulses and reflexes that keep us alive are turned off. Our bodies turn into dead weights and crash towards the ground, their motion only controlled by the emotion-free rules of gravity. There is nothing to alter the falling path dictated by physics, a path that might abound in sharp-edged objects. The physical world, the notion of time as a linear unstoppable phenomenon, and our sense of self are suspended when we are in the throes of a seizure. We can only perceive the aftereffects such as injuries suffered during the fall or residual headaches. To casual observers of the seizure, we are malfunctioning human machines – albeit machines with given names, friends, and lives. To our parents, the seizures are nightmares come to life.
The self-preservation instincts that nature bequeathed on us and the many years of parental nurture that allow us to look after ourselves all come to nought. If parenthood is a relentless exercise in honing skills at conjuring nightmares and teaching your children to avoid them, seizures leave you hapless. Parents can conjure the specter of their child having a seizure at the top of a tall flight of treacherous stairs, but can do little to protect them with certainty.
I’ve observed the video of a person fall into a trance during a religious ceremony. The sounds of the chants seem to arouse something in the entranced who started moving and shaking in a way that did not seem entirely voluntary. At the end of the trance, the person collapsed and fell asleep. This helped me understand why in some ancient cultures, epileptics were considered possessed by benign spirits. I imagine an epileptic in the throes of a seizure being garlanded and anointed with reverence. In America, most parents reach for a phone to dial 911.
I also suffer from petit mal seizures. They are mini-seizures during which my brain blanks out without the spectacular thrashing around evident during a grand mal seizure. For a bite-sized 5 to 10 second period of my life, I stare blankly and can neither hear nor respond to any sound. I expect that because of my blank stare, my brain does not see, perceive or remember anything that my eyes look at. These happen often enough over the course of a day that my parents thought I was being a bored teenager, constantly tuning them out. My teachers likely think that I’m daydreaming. I see it as an insidious quiet sacrifice of time that I make to the monster of epilepsy that is inside my brain. My brain has learned to make up these missed snatches of existence.
To cage this monster, at once petite and grand, I swallow a handful of pills every night. These have to be taken without fail to keep the cage strong to constantly contain its capricious prisoner. The pills work by slowing down my brain 24 hours a day so it does not trip over its own electrical activity and go haywire. The price that has been chosen for me to pay for my volatile monster’s containment is for me to perceive the world and react to it slower every second of every day. I think of it as a parent attaching a heavy iron chain with a ball to a child’s leg to make him walk slowly so he will not stumble and fall.
A grand mal seizure can cause us to suffer other indignities. The ability to control our bladder and bowels that we learned as young children are lost during major seizures. Often, the first task after a major seizure is a hazmat cleanup. When my parents spoke to school administrators about my condition, they were told that the school had trained personnel who could handle me if I had a seizure. I dreaded the thought of seizing up in the middle of a class, sprawled on the floor with bodily waste leaking out of my shorts. To make matters worse, the neurologist prescribed an anal suppository to be used if my seizure lasted for more than 5 minutes. I would rather be dead than have someone at the school pull down my shorts and insert a suppository. I begged and pleaded with my mom, a physician who seemed to think that there was a nasal spray alternative, to do whatever it took to find the spray and not give the school nurse the anal suppository kit with my seizure action plan. I died many deaths of potential embarrassment until my parents got the nasal spray.
Since the lack of sleep is a major epilepsy trigger, I have been robbed of the freedom to party and stay up or study late and substitute coffee for sleep. The epilepsy medications I take are known to cause weight gain. I’m acutely conscious of my flabby body and dread the BMI discussion my pediatrician broaches regularly while implying that I should somehow be able to will myself a slimmer waistline. Epilepsy is my mercurial conjoined twin and my parents dread what it will do if I’m steering 2 tons of steel and plastic after getting my drivers license. Even though the state of Texas allows me to apply for a drivers license, I have chosen to not do it to avoid adding to my parents’ worries. My childhood dream was to be a pilot and I loved to dress up as one for career day in elementary school. I request to go into the cockpit of every plane we fly on vacations. Epilepsy has put paid to this dream for me.
To the world, epilepsy has made me a defective human. Unlike those who are physically disabled and can see what others can and they cannot do, I present the illusion of not being so constrained. Epilepsy is like a mole on the back of my neck that I cannot feel by touch but is there for all in the world, but me, to see. It’s a mole that screams its presence at times and, at others, draws little attention. Its presence informs everything I can and cannot do. I pay its wages in being secretly labeled a freak and attracting the casual cruelty of other teenagers. To some, I’m a curiosity, an amusement, who, in past eras, would have been hidden away but one who modernity has brought out for open display. My desperate, all too public toil, to aspire, but never reach, their level of normalcy is pitiful to them. From my perspective, although the rewards for slowly crawling up the steep, treacherous slope that life has laid out for me may seem small, beneath the thick skin I’ve tried to develop for the disdainful eyes of the world, they are my own licks of victory. I may be mocked openly or discreetly but I do not consider mine a lesser life.
I’ve been asked if I’m bitter about epilepsy robbing me of the keys to so many doors I have not had the chance to open. I’m disappointed about not ever having the chance to be a pilot but I accept that life deals us different cards. Just as it is useless for a short kid to be bitter about being unable to play competitive basketball, I have decided to not wallow in self pity or indulge in phantom nostalgia for the sweetness of never-tasted fruit.
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About the Author
Neelan Krishna is a rising senior at Highland Park High School in Dallas, TX. His work has been published in the Boston Globe and The Globe and Mail (Canada).