I’m sitting in eighth-grade science class a year after my first seizure. I didn’t sleep much the night before; my parents had a terrible fight. Kristi says Mom chased Dad around the house with the fireplace poker, but Mom isn’t that nuts. After the fight, she went off on one of her sprees, car tires squealing around the turn in Lariat Loop. I was in bed praying for her when I began to feel a thumb pressing behind my eyes. Storm clouds gathering inside my head. Not now! I whispered, imagining white Dilantin powder sprinkled over the clouds to calm them. Then another, sneakier thought: Maybe it’s a good time to have one! Bring Mom back to her senses! Because sometimes I wonder if that’s why I have fits in the first place—in response to our family convulsions. So I sat hunched in bed for hours, listening, wishing my brother was home.
Mr. C is going on about digestion. Thanksgiving is coming up, so it seems like an appropriate topic. I stare at a photo of a huge gobbler he has posted on the bulletin board. It’s got a bib around its neck. I try to pay attention to Mr. C, but it’s weird: I know I am in the classroom and it’s morning, but then I’m not sure. I drift in time, wonder if it’s the end of the school day. Pressure builds behind my eyes again, and I see, almost as if she’s there beside me, Mom droopy-eyed when I woke up this morning, averting her bloodshot eyes as she made breakfast. I dread going home after school. She will be feeling guilty and blue, standing at the ironing board, pressing clothes like a zombie. I prefer it when she’s angry, and I hate that. Sometimes I feel she will suck all the blood out of me. I don’t know how she got home last night, if my sister Kristi brought her. Or Dad. Or the cops.
Toad Man, my evil twin, was still in gestation back then. I see that now years later. If I had a seizure enabler then, it was my mother. Or father. Or the tension between them. Of course, I didn’t realize this then. They were huddled under the temporal shelf in my brain, where my seizure focus is located, giving birth to him as they had to me, no more conscious of what they were doing than I was.
I stand and gather up my books, thinking class has ended. The other kids giggle. Mr. C gives me a what-the-heck look, so I sit back down and stare at that dumb gobbler. Dr. Myers says I have to stay focused when I feel one coming on. My grandmother Gammie, Mom’s mother, raises turkeys on her Tigard, Oregon farm for Turkey Day. Ugly, nasty birds that try to peck you if you get near their pen. Disgusting with their hideous hang-down wattles and beady little eyes. Suddenly, it’s as if I’m in two places at once: the classroom and Gammie’s farm. No! I can’t be having a spell at school in front of my classmates. I’m not sure what time it is and think maybe I’ve just gotten up. When I start to stand up again, I realize Mr. C is calling my name and has been over and over, asking me a question. I haven’t heard him. A pins-and-needles tingly sensation begins in my fingers, which always happens before a spell of the trembling nasties. The other kids giggle. I blurt out all I know about turkeys, because it’s science class and turkeys are part of science: how they peck at each other’s butts until they pluck all the tail feathers out; and I once saw a tom turkey peck out another’s eye, which hung down its cheek. “They’re mean and eat their own poop. They will eat anything. If you knew what they ate you would never eat another drumstick in your life.” The kids howl with laughter. Mr. C looks at me like I have changed into an alien being before his eyes, metamorphosed like the insects he talked about last week. Maybe I have. I realize I’ve had a blank out, what Dr. Myers calls a petit mal. Maybe several, like I did once on the school bus. Only this time everyone notices. I think of dashing out of the room, but I’m afraid I’ll have a big one if I do. Better to sit down and make a joke of it, breathe deeply and concentrate, look at the others with a goofy expression so they think I’m just being a jerk. Nothing weird about that. Make people laugh and they will forgive you most anything. It’s a tactic I’ve learned to disguise my problem. Of course, I don’t coherently realize this, for I hover between consciousness and unconsciousness in that special hell reserved for epileptics.
What I need to do is stay alert, clench my fists and breathe, repeat to myself: I’m not a freak, I’m no spaz, there’s nothing wrong with me. I will be skiing in the advanced class at Mount Bachelor next winter. I’m going to the Boy Scout National Jamboree in July. I’ve done the mile swim at Lake Siltcoos in water cold enough to freeze the balls off a brass monkey. I’ve learned to rescue drowning swimmers. I’m no freak.
Arriving at home that afternoon, I dread finding Mom in one of her moods, either sad and tearful or happy-weird. I must tiptoe around her. Her angry fits are the worst. You can tell she’s mostly mad at herself after her freak outs, but she takes it out on anyone within reach. She rushes to meet me at the door, like she knows what happened. She’s smart that way. She drops down on a knee and grabs my shoulders, looks hard into my eyes. I try to pull away. Too late. She seizes my chin and stares at me point-blank. I start feeling dizzy. Pins and needles begin in my hands again.
“What happened, honey? Did you have a seizure at school?” Peering right into my brain like she does. Mom can see the storm clouds building up in there and sense the renegade electricity coursing in me through her fingers. “Why didn’t they call me?” She grabs my shoulders and hugs me to her. I smell her hand lotion and the sticky stuff they spray on her hair. She’s all gussied up; she’s been to the beauty parlor. Probably Bob and Vira from across the street are coming over for cocktails, and Mom has been taking what Kristi calls her “happy pills.”
“No, I didn’t have one,” I cry. “Honest, Mom…I didn’t.” I struggle to break free.
“We need to get you up to bed, honey.”
“I didn’t, Mom. Really.”
“You did. I see it in your eyes. You had an event.” She shakes my shoulders.
“I blacked out for a second is all.”
“Are you out of your right mind? You could have another at any moment.”
She sits me down on the couch and calls Dr. Myers. He tells her to give me one of the white Dilantin capsules with the red band around the middle. I broke one open once and the white powder inside tasted like Dutch cleanser. But somehow the powder sprinkled over the clouds stops electrical storms from spreading through my brain.
Mom insists I can’t go out to play football, that I need to go to bed. I argue that I have homework to do. I feel fine. For once I wish Dad was home to take my side, even if he sent me outside to do yard work. I see it’s hopeless. So I compromise and sit at my desk beside the bed. After the neighbors arrive for cocktails, Mom forgets all about me, and I am out of prison.
/ / /
I can’t say when my parents’ marriage went cold, but by my adolescence they sat wordlessly through dinner. The tension between them infused our house. I can still hear silverware clank against dinner plates at the silent table, nobody speaking, can see my father frowning, chin tucked to chest, eyes drilling into me, suspecting I am trying to figure out how to scoot anchovies off my salad plate into my pocket. No fooling a lawyer! Thick silences at dinner gave over to Mom’s sulking and Dad hiding behind his newspaper. At other times, all that stored-up tension came out in violent home redecorating: Mom shouting and throwing things against walls, while Dad pleaded with her, and Kristi and I huddled terrified at top of the stairs in our pajamas. However, it was peaceful on nights Dad was out of the house performing his civic duties—Junior Chamber of Commerce and all. Mom also had her civic duties, her clubs. In newspaper photos of their teas, she looked like a rebel bad girl, as out of place in her photos as I was in mine.
Growing up, Kristi and I were the closest of allies but fought like rival bandits. The competition for emotional resources in a troubled home is as fierce as the competition for resources in an impoverished country. Ours was the classic alcoholic family. Johnny the escape artist. Kristi the rescuer who tried to keep the broken pieces together. Dad the denier. As president of the Oregon State Bar Association, he couldn’t have an alcoholic wife or epileptic son. Epileptics were still practically outlawed in the state at the time. When I was diagnosed, Oregon still had a compulsory sterilization law for epileptics, as did many other states. I’d like to believe he wanted to protect me. I played conciliator, the good, appeasing middle child who thought if I could just please everybody everything would be okay.
I’ve often wondered about the connection between my mother’s drinking and my disorder, since both began at about the same time. In any case, my fits, Mom’s alcoholism, my parents’ fighting, and the tension in our house were all part of the same low-pressure storm system. The secrecy we shared about our family troubles was part of that system. No one dared break the code of silence and betray the group. We were like a family in a Grimms’ Fairy Tale, bound together in loyal toxicity, all playing a role in our malfunction. I can’t say how many fits I had in my adolescent years, because amnesia erased them for me and no one ever mentioned them except my mother, and she rarely. It was as if we all suffered retrograde amnesia. Denial is commonplace in epileptic homes. Ours is an ailment regularly concealed behind a veil of secrecy, as is alcoholism. So we had a double dose of evasion.
Some nights, after a bad argument with my father, Mom sped off in her Ford Country Squire Station Wagon. I heard her squeal out of the drive and around turns of the loop, heard her car whump up onto a neighbor’s lawn, throwing up divots, or take out a mailbox, then roar off again. Finally silence. I lay in bed unable to sleep, scarcely breathing, listening for sirens, afraid for her, half-pickled in vodka. The fear I felt in those moments was intertwined with epilepsy. I often had simple partial seizures on those nights, brief black outs, likely triggered by acute stress. These were accompanied by grotesque visions that I couldn’t turn off or turn away from as I lay in the dark, staring up at the ceiling.
I didn’t know it then, but Kristi would call her pal Kari. She would ride over on her bike, pull the extension ladder out of our garage, and put it quietly up to my sister’s second-story window. Kristi climbed down and the two of them went out on their bicycles, looking for Mom. She usually didn’t get far. They would find her in a neighbor’s driveway or parked on a fairway on the Oakway Golf Course. They would guide her home in a mini-caravan, one either side of her station wagon on their bikes, like a police escort.
Incredibly, my mother never had a serious accident. Blotto drunk as she was, she never got a DUI. Just as incredibly, my father never got her into a treatment program.
I don’t know what role the anxiety I felt over Mom’s drinking, her mad flights, unpredictable rages and funks played in my epilepsy. Or for that matter coming home from school to find her in a mood—dour or doleful, flighty or belligerent. Or what role my Dad’s disavowal played in it. Given my susceptibility to seizures during times of high emotional stress and anxiety later in life, it’s likely they played some part. I don’t blame them for my ailment; mine is a neurological not psychological disorder. If it has a psychological component—and I believe it does—it is complex and amorphous, and I can only speculate about it. Some researchers believe that fear can trigger seizures by causing discharges of the already unstable nerve cells in our seizure focus. In those parlous days, I was afraid much of the time.
/ / /
Retrograde and antegrade amnesia are small kindnesses of our ailment. We epileptics do not remember much of the anxiety we feel before a fit or our disorientation and distress following a seizure before we plunge into deep sleep. This amnesia is of variable duration: moments, hours, or days, pre or post-ictally. It can be a profound blackout or a fuzzy haze over recalled events, a mental fog. In my case, retrograde amnesia has gone to extravagant lengths. It erased large chunks of my childhood and troubled adolescence, including the onset of my epilepsy and the beginning of my mother’s drinking. I am told I was a happy, mischievous kid who smeared peanut butter on walls. Insatiably curious, I would sit down next to strangers on buses and start up conversations. I have heard that I liked to make people laugh. I don’t remember any of this. I recall almost nothing of my adolescence either. It is as if I am peering through fog at hazy black-and-white figures on a drive-in movie screen.
I cannot say whether my few memories have a basis in fact or are altogether apocryphal. They seem more like auras than recalled events. In one memory, I see a redwood stump, half buried in the sand at low tide on Oregon’s Gearhart Beach, the remnant of a primeval forest. Running through hip-deep surf to reach it, Johnny and I are caught in the undertow and pulled out to sea. I spin along the ocean floor, choking and sputtering, not knowing which way is up, which down, arms and legs flailing desperately, tugged down into numbing Chinook coldness. The rushing surf flushes salt-water up my nose. Then I’m roughly seized and lifted free of the water. Dad plops me down beside Johnny, who is wrapped in a towel, hugging his knees before a huge bonfire on the beach. We sit huddled shoulder to shoulder. The fire’s heat radiates against our bare shins, banishing the ocean’s chill. We listen to adults congratulate Dad, who has pulled two sons, one after the other, from the waves. We sense his eyes drilling into us, and Johnny flashes me a devilish, sidelong grin. Dream or memory or both, I can’t say. Maybe for some of us all must remain a fiction.
My sister Kristi tells me that we sometimes woke up and ate breakfast as kids with Mom still missing after one of her midnight sprees. I don’t remember this. However, I can imagine sitting silently at the breakfast table, Dad insisting we eat our cereal, none of us daring to ask where Mom was. I can almost conjure the horrible, cloying dread and shame, my brother’s and sister’s brows tightly knit, shredded wheat turning to mush in my bowl. Will she come back? I dare not glance at my father. Didn’t he worry about her? How could he sleep? “Everybody ready for school?” he would ask stoically. Off we trooped, Dad to the office, us kids to the bus stop, locked in a cabal of denial.
Then I enter high school. The fog lifts and technicolor is born. Full-screen color. I start remembering: the time my jaw was set without pain medication after a skiing accident; the time a friend and I were beaten by an older boy while another held a gun to our heads; the time I was busted for shop-lifting with the pastor’s son. Still, I’ve lost memory of many events with deep emotional roots. My sister tells me I had grand mal seizures at school. Too painful to remember. Fortunately, my classmates didn’t bully me or label me a freak. Once I reached adulthood, memory erasure mostly stopped. I no longer lost whole periods of my life. Perhaps the emotional burden had become lighter. Where there is a blank in memory, I am content to leave it blank.
/ / /
Even as a young man, I’d begun to wonder why my father made so little effort to save my mother from drowning in the bottle. But the truth is none of us did. We found it easier to deny her drinking than confront it. Appearances above all else. It was rule number one of the Protestant shame culture we grew up in, reinforced by the suffocating social conformity of the WASP country club set of the Fifties and Sixties. I was keenly aware of this because I, too, had something to hide. We were well-practiced in denial, both with Mom’s drinking and my epilepsy. Never mentioned it. Never once discussed what the family would do if I had a seizure in public, at school, on the ski slope. I got the message: I dare not! I might have bouts of the trembling nasties at home but dare not shame the family by having one in public. Any more than we could publicly acknowledge that Mom had a drinking problem. I saw them as one in the same: none of us could admit to the world, even to ourselves, that ours was not the perfect family posed on yearly Christmas cards, smiling on the ski slope at Mount Bachelor. The family of a successful Eugene attorney, founding partner of a growing law firm, soon-to-be President of the State Bar Association, minister’s son. There was no alcoholic mother in our home, no epileptic son. No dysfunction here. We lived in a collusion of silence, tyrannized by our inability to face down our troubles. My father was steadfastly unaware of the harm he caused in his denial. His abnegation of our ailments was an abnegation of us.
Many epileptics’ families share such a collusion of silence. Traumatized by an ailment that many consider a curse, they avoid or deny it. Some are so ashamed that they don’t seek treatment for an epileptic child, especially conservative religious families that associate epilepsy with demonic possession or consider it a judgment passed on them by God. However, it’s not uncommon for a family to both seek treatment for an epileptic child and never mention it. We are the secret people. Ours is a condition one should not talk about.
[from The Secret People: A Memoir]
WILLIAM LUVAAS has published four novels (Little Brown, Putnam, Spuyten Duyvil) and two story collections (U. Okla. Press, Spuyten Duyvil). Ashes Rain Down: A Story Cycle was The Huffington Post’s 2013 Book of the Year and a finalist for the Next Generation Indie Book Awards. Other honors include an NEA fellowship, first place in Glimmer Train’s Fiction Open Contest, The Ledge Magazine’s International Fiction Prize, and Fiction Network’s 2nd National Fiction Competition. Luvaas has published dozens of short stories, essays, and articles in many publications, including The Village Voice, The American Literary Review, Antioch Review, Harpers Weekly, North American Review, Short Story, The Sun, Stand Magazine, The Washington Post Book World, and the American Fiction Anthology, with work forthcoming from the Cimarron Review and Sequestrum. He is Fiction Editor for Cutthroat: A Journal of the Arts.
An artist, art writer and guest curator, ELIZABETH JOHNSON began writing reviews for artpractical.com in San Francisco, California, and later covered exhibitions in New York City, Philadelphia, and the Lehigh Valley for theartblog.org. She has written for artcritical.com, Artvoices Magazine, Figure/Ground, PaintersonPaintings.com and DeliciousLine.org. She interviews gallery artists for Gross McCleaf Gallery in Philadelphia, Pennsylvania. She curated The Big Painting Show at Workspace Limited in San Francisco’s Mission District and has since curated shows that feature Lehigh Valley and urban artists at Lafayette and Cedar Crest Colleges. In 2021, she co-curated Pathological Landscape for Marquee Projects in Bellport, New York and curated I’m So Glad I’m Just Like You at Brick + Mortar Gallery in Easton, Pennsylvania. Residential Tourist, co-curated with Emily Steinberg and Celia Reisman for Gross McCleaf Gallery, will open in Spring 2022.