Melissa Fraterrigo

Word Count 1029

I’m never prepared when it happens. Your eyes roll up inside your head, then skate back and forth. Your legs tighten and release, tighten and release as your arms jerk stiff spasms. As you seize, I cradle you, your head in the bend of my left elbow; you’re small enough now that your hips and legs curl my midsection. Sometimes, you wet your pants. I say, “It’s okay, Stellebelle, Mama’s here.” Or “Come back to Mama. Come back.” Because you seem light years away, resident on some distant planet. Even as I’m talking to you, holding you, I’m watching the clock. I stretch to take the Diastat from the kitchen cabinet behind where we crouch. Any seizure that lasts more than five minutes requires Diastat. “It’s okay, Stellebelle. Mommy’s here.” I open the plastic holder, take out the rectal syringe, and the lubricant. I hold you. We wait. 

In the 20th century, phenobarbital became the drug of choice for epilepsy. It’s what Aunt Sandy took once a day. Grandma called her sister each afternoon to remind her to take her medicine. Despite these efforts, each time we gathered for a holiday or family party, somewhere in the middle of the dinner, Aunt Sandy would suddenly drop her fork and begin to convulse. Mom slid her hands under Aunt Sandy’s armpits and eased her onto the floor. She rolled her onto her side and smoothed an afghan over her hips. Afterward, Aunt Sandy would snore deep, honking breaths, her body rising and falling like some beached animal. Mom remained on the floor beside her. ‘It’s okay, Sandy,’ she said. ‘You’re okay.’ 

Phenobarbital is still used, but it has been known to create learning problems and has caused cancer in rats. I keep the prefilled syringes of Diastat in my purse, in the kitchen cabinet, in the car, and in your classroom at Montessori. Diastat, a form of diazepam, belongs to the benzodiazepine family. The fast-acting anticonvulsant is known as a rescue treatment as it instantly stops seizures. Yet, like in your case, it can make breathing difficult.  

The nervous system contains 100 billion or more nerve cells that connect the brain and body to each other. Nerves transmit their messages electronically with one fragile leap from the axon of a neuron to the dendrite of the next. A seizure occurs when multiple nerve cells fire simultaneously. Think of it like the necklaces you make for me at school, how you push each bead onto the end of the string. What happens when you try to bead seven beads at once?

Each of your seizures carries within it some shard of the first—I see all the electric impulses flashing inside you like a pinball game. A trail of blue and red and gold mark the places where the abnormal discharges have traveled, and these overlap until all adjoining parts glow. But your first seizure shimmers with the greatest intensity—status epilepticus—a life-threatening disorder that occurs when seizures last more than thirty minutes. You were thirteen months and we were living in Philadelphia when I returned from the grocery store to discover daddy clasping you an hour after you were put to bed. You wore zippered pajamas with an appliqué of a small bear on the left side. This is what I fixated on as Daddy leaned over and placed his mouth over yours.

Nine percent of people with status die because the intense convulsions and discharges in the brain are so severe that the person is unable to breathe properly. Without immediate care, the Children’s Hospital of Philadelphia, seven minutes away by ambulance, your heart or brain might have been permanently damaged. You might have died. 

We discontinued the Keppra after half a year. You were slow to talk, preferred to point or cry when you wanted something. Now, we just keep the Diastat on hand. It instantly halts seizures, only it still warrants a visit to the ER. The drug is so potent that it slows your respiration along with the racing electrical activity in your brain. 

Dr. H thinks you will outgrow these seizures. Dr. X, who we saw briefly when we were in Philadelphia, had the same assessment. All of their examinations are the same. They measure the circumference of your head, test your reflexes by holding your arm, tapping your elbow then knees with that tiny hammer that reminds me of elves. They want to run tests—EEGs, CT scans. Dr. H is still pushing for an EEG. First, we would keep you awake for 18 or more hours and bring you to the hospital, where they would paste about two dozen electrodes onto your scalp, and then they would expose you to bright light in hopes of eliciting a seizure. The doctors, in turn, would have a record of the distinct waveform pattern of your brain. They could see where the abnormal electrical impulses occur. 

Medical doctors like tests. They seek data to compare, offer studies, and prescribe medicine. We’ve had other help. In Philadelphia, a play therapist came to our apartment and walked through the rooms as if she were visiting a rare museum. She encouraged us to try and distract you with loud sounds that might disrupt a seizure. I filled two round plastic containers with beans and placed them on the bookcase. When you were about to seize, I would toss these on the ground to “shock” you from seizing. This therapist also encouraged me to pinch your belly in the initial moments of a seizure. Once this worked, the other times it did not. 

My brain catalogs future worries. Will you be able to hold down a job, kiss a lover, carry a baby? There is no treatment for such fears. As I lean against the kitchen cabinet, your arms and legs soften. The raw grate of your jaw releases. Your eyes fling open and fix on me, lips part into a giant O before you cry a loud and eerie wail. I hold you, rock you back and forth. I tell you it’s all right. I never know if I say these things for you or me. My own electrical impulses get away.

Melissa is the author of the novel Glory Days (University of Nebraska Press, 2017), which was named one of “The Best Fiction Books of 2017” by the Chicago Review of Books as well as the story collection The Longest Pregnancy(Livingston Press, 2006). The University of Nebraska Press will publish her forthcoming collection of essays, The Perils of Girlhood. She founded the Lafayette Writers’ Studio in Lafayette, Indiana, and also teaches creative writing at Purdue University. Melissafraterrigo.com