Featured Image Credit: Elle, by Dev Murphy, previously published in New Ohio Review.
I stood to leave the room, just as the other dozen people were standing to leave the room, but the room hesitated. My body detached from its surroundings and I hovered above frozen feet. I carefully placed my hand on the chair back, looking at it intensely and thinking, hang on, just hang on.
“I’m sorry I fell asleep a lot,” I said to the woman standing over my prostrate body, as she slowly removed the sticky electrodes embedded in my hair.
“What?” she said, pausing and looking down at me.
“I fell asleep during the hyperventilating part and the strobe light part and the resting part,” I said, rambling, my hands gesturing in the air above me, “I hope I didn’t mess up your test.”
She moved back to her computer equipment, placed near my feet. Glancing at me, she shook her head. “Nope. Got everything fine.”
I sat up and scratched at my itchy scalp, my fingers sliding into the adhesive residue that she hadn’t completely scrubbed out with her towel. I tried to smooth it down, feeling wet lumps every inch or two.
“What can you see on that machine?” I asked.
“I can see if your eyes are open or closed,” she began to list. “I can tell if you’re asleep or awake, and the rate of your breathing.”
She took a breath and smiled at me, her fingers still splayed out in the act of counting. “Your eyes remained closed the entire time, you remained still, and sleep was not achieved,” she finished.
“Did you see seizures?” I asked looking away, my chest tight, my fingers still working on the knots in my hair.
“Well,” she started, “I’m not really trained to read these results to patients. But we’ll be sending these to our on-call neurologist this afternoon and if there’s any concern you’ll hear from someone right away.” Her smile was warm and she looked directly into my eyes.
When I was nine years old I began seeing things. Things walking in my bedroom walls like skinny, stooping men slowly walking behind floor-length curtains. I saw things scurry back and forth across my periphery. Peering in my windows, eyes across the room. They invaded my dreams and filled the waking sky. Forms that I could only interpret as bad spirits, arriving to take me away from the earth to a place that I knew I belonged to. A dark place.
My first bout of insomnia started then. I resisted sleep at first, out of the brute will of a terrified child’s stamina. I made up stories to entertain myself. I drew in my notebooks – designing layered dresses, wrap-around tops, and overly adorned shoes. I read book after book. Sometimes I’d crawl around on the floor and play with my dollhouse things as quietly as I could, worried that I’d wake up my always-alert mother downstairs. My dollhouse family would go on long excursions to Colorado, California, the East Coast. I’d spend hours carefully packing and repacking their miniature clothes, dishes, linens, foodstuffs, and camping equipment. I did anything to avoid sleep.
When I did fall asleep, I was beaten, chased, abandoned. I would fall off a cliff and land without waking – feeling every bone break, blood vessels pulsing out puddles of blood. Too many times I saw my mother die, my father disappear, my dog hung by its neck. I was shrunken into a raisin by invisible gas in a glass box – my skin tightening around my small skeleton. I was even skinned alive, my flesh bloodless and only slightly more pink on the inside.
And when my eyes finally opened I would be twisted and tense under my covers, trying to cry out from a sore throat. Or I would awaken sliding on my heels down the stairs because I was sleepwalking.
A few times, between age ten and twelve, I woke up in a urine-soaked bed.
The day after my test, hours after dinner, my cell phone vibrated on the couch next to me. A local number, but not recognized so I didn’t answer.
“Ellee,” a firm, nasal voice bleated out from the voicemail. My doctor. “This is Jean. I have the results of your EEG.”
I stood up and began pacing while I dialed her back. Why was she calling so late? Abnormalities, she said. Brain waves doing something other than they are supposed to. Spikes of activity. Left temporal lobe.
“So am I having seizures?” I asked, sitting on my bedroom floor and picking at the rug.
“Well, I’m not a specialist so I can’t make that diagnosis,” she charged forward, her bright voice harsh against the silence of my apartment. “But I wanted you to know the EEG results, so you are better prepared to speak with the neurologist.”
When I was ten, I blacked out for the first time from a grey-planked dock. I was on vacation with a friend and her upper-middle-class Connecticut family. I was attempting to catch a huge sparkling fish with the clean white net that we found in the storage of her family’s lake house nearby. She went back to get something while I leaned in toward the water, my back to the shore, not wanting to wait for her. I dipped the edge of the net with the idea of slowly sliding it under a silver fish belly. The sun shimmered like white-hot oil on the surface of the still lake.
I fell in headfirst, the fish scattering and then drawing near as I sank to the shallow bottom. I don’t remember the fall. I don’t remember going from dry to wet. When my eyes opened, my vision focused on a puckering fish floating within grabbing distance from my nose. The long wooden legs of the dock lined the murky background, where dozens more foot-long fish swam in and out of the shadows. I opened my mouth to yell and fist-size bubbles pushed against my face as they surged toward the surface of the lake. When they cleared, the fish was gone.
I emerged from the lake, dazed, as my friend was running back down the path toward me. From the stretched look of her features, I assumed she saw me fall in. By the time we struggled back to the house she was yelling for help as I shivered in the fading light.
The doctors ordered a special test to look at my brain activity. No one told me then they were looking for seizures. And I didn’t ask — I was too concerned about what exactly they could see on their machines. As they wove the rubbery wires in my hair I wondered, would they see the nightmares? Would they see my memories? Like a movie playing on their screens, would they see the things crawling in my bedroom walls? Would they see my fear?
They called a few days later with the results: they saw nothing. But the blackouts, the nightmares, the waves of instability and disconnection from my surroundings continued. I learned to manage my dizzying reality by remaining close to walls, holding onto the backs of chairs, sitting as often as I could, feigning confidence over my suddenly unsteady gait.
I sat on the edge of my bed, sometime in the early morning hours. I had developed insomnia again as an older teenager. My mom had come in to check on me after hearing me quietly cry for hours. She listened, but didn’t seem to understand my distress. I tried multiple times to explain why I was upset, but she just held my hand and watched my eyes, still not understanding.
“Try to calm down,” she soothed. “Maybe just lay still and close your eyes. At least you’ll still be resting.”
I tried to explain again. Words pushed out between short breaths. My face and chest tingling and numb at the same time. Poetry shuffled off my tongue in gags.
“I don’t understand, Ellee. I’m sorry.” She held both my hands in hers.
“There’s a darkness, Mom,” I rasped in a whisper, suddenly able to find concrete words. “Inside me. Deep.”
She squeezed my hand, her green-brown eyes soft in her olive skin. It was all she could ever do.
A week after my EEG, the neurologist opened the hospital door, smiling. She came to a stop, her tall form hovered over a low stool considering the landing, and finally arranged her long limbs in a tight posture facing me.
Brief introductions were exchanged. While she glanced over my paperwork, we discussed my situation in a staccato back-and-forth. She looked up at me and smiled again. Her teeth were white and straight, and her cheeks rounded into her lower eyelids.
“You’re having seizures,” she said, her fingers still touching my file. She looked back down. “The EEG showed some abnormal brain waves throughout the test and some activity in your left temporal lobe.”
“Is this why I pass out sometimes?” I asked.
“Yes, I suspect so, based on the symptoms you described,” she explained, looking back at me and folding her hands in her lap, “The nausea, the extreme dizziness, even the sudden panic, or ‘flight or fight’ response before losing consciousness — it’s all caused by disordered messages in the left temporal lobe.”
She paused, letting me take in her words. I stared at her in the mouth.
“Since you’ve had these symptoms since you were a child,” she went on, “I suspect you’ve been having seizures most of your life.”
I calculated the years in my head.
At 19 years old I moved back into my parents’ home, though I opted to live in a part of the house that operated like a separate residence — with an upstairs and downstairs and my own front door that I rarely used. A few months after settling in, I woke up in the middle of the night. Another bout of insomnia had begun again. I stumbled groggily to the winding staircase, headed toward the bathroom. About halfway I slipped and landed three steps below. Hard. Like I rolled right over an invisible ball, landing with a fleshy smack on the wooden stair, my teeth clanging together like bells.
My yell woke my mother. She shouted from her bedroom door: “Ellee! You okay!?”
“I’m okay,” I shouted back across the 1920s five-bedroom farmhouse, where poorly insulated walls didn’t require the volume we were using.
I put my head in my hands and tried to manage the throbbing. It felt wide and heavy against my palms. And loose. Like two handfuls of wet noodles, it felt as though it was draining right through them. I closed my eyes.
Sounds pulsed through the darkness above me; bursts of sound amidst the silence. My mother was yelling. My brother’s voice weaving in and out of hers, trying to ask questions. “Call 911!” she screamed. “She’s shaking!” My father calling to me from my right side. Why is everyone freaking out? I thought. Calm down, calm down, I tried to tell them. I’m fine. My brother left to go get the phone, his footsteps a rushed rhythm on the wood floor. My mother was yelling and crying. My father still speaking loudly in the measured, stern voice I remembered from the reprimands of my early childhood. “Ellee,” he said. “Ellee,” over and over. I’m fine! I tried to shout and realized I couldn’t speak. My senses swirled. Are my eyes open, can I see? I thought. I tried to lift my arm out toward my father’s voice, but it didn’t move. Panic flooded me and I started to cry, the wet heat draining into my ears. I must be laying on my back.
Slowly sounds became more organized, as though someone was turning the volume up one notch at a time. I felt my chest moving with my breath. I moved my mouth. I lifted my eyelids and moved my fingers in my father’s hand. I shifted my head to the side.
Someone kept repeating my name.
I hugged my new husband goodbye as he prepared to leave for the morning. We married when I was 25 and had been married a little more than a year. As I pulled away my arms went limp. I blurted, “Oh,” jerking my head back to look at his face. He caught me before I fell to the cream-colored carpet in the hallway. This was not new to him.
I opened my eyes to his face hovering over me, his hands behind my head and shoulder as I lay on the floor. His eyes quickly moved from my eyes to my mouth and back. “You okay?” he asked, rushed.
He helped me sit up, instructing me to breath slowly. The white walls of the narrow space were undefined, though I could have touched them if I just reached my hand out. He helped me to my feet, but the feeling I had grown accustomed to –- the feeling that grew somewhere deep inside my bones –- was surging back to the surface again.
“Oh,” I rasped, gripping his upper arm before I lost consciousness for the second time.
When we dated, I would often faint into his arms like a damsel in a stuttering black-and-white silent film. I’d softly cry out as I’d reach out for his arms, my eyes fluttering moments later as he leaned over me. We never admitted if we thought it was romantic. We both said it was strange. I always said I was sorry.
After diagnosis, I searched online for more explanations. I had to look up the spelling for “temporal” three times. I found drawings of the brain and saw Wernicke’s area embracing the auditory cortex. I learned about the influence of the limbic system in the center, twanging out emotions riding on electrical hormones. I read articles explaining my complicated inner life to me in brief, academic sentences.
I found testimonials that patients posted in online medical bulletin boards, like some kind of anonymous digital support group. Me too! Me too! they all seemed to validate each other. I read them one by one, and after a few hours found myself mumbling to my laptop screen, “me too.”
I learned that Van Gogh and Poe were thought to have the same malfunctioning temporal lobes. Alice in Wonderland was written with a brain that would misfire in that lobe too. Some people have out-of-body experiences, where their imagination has placed them above their own stricken form and they view the scene like a movie: Alice shrinking, Alice growing tall.
Others believe the seizures to be miraculous; a touch from the Divine. Dostoyevsky wrote, “I felt that heaven descended to earth and swallowed me. I really attained God and was imbued with Him. All of you healthy people don’t even suspect what happiness is, that happiness that we epileptics experience for a second before an attack.”
I remembered the times that I would sit in my car in the parking lot, engine off, waiting for no reason. I would realize that I was daydreaming but often wouldn’t remember what. Sometimes this concerned me. My organs would vibrate quietly as I would slip back into dreaming. Once, I daydreamed that I was standing in the street and white light floated to the surface of my skin and formed a glowing ball that lifted me, stomach first, into the air before exploding toward the heavens. When the daydream ended I was standing outside my car on the sidewalk, the keys in my hand.
I wondered what was wrong with me. I wondered if I was special. I asked God what He wanted from me.
Just before diagnosis, my then-husband and I attended a friend’s art opening. The artist had a gallery full of mixed media images depicting people’s fears. I thought of my own fear. I thought of the secrets I had yet to tell. My husband’s fear was second on the wall. His was about violent harm against my body. The piece held a painted face with a red thread stitched harshly across it.
The room suddenly breathed in on me. The ceiling flexed. The crowd merged into one being with bowed legs and a wide head. I stumbled to the back of the room, near the entryway, and found safety in a cushioned chair. I tried breathing. I tried water. And then after five minutes of my increasing agitation, my husband blocked me — his arms wide and shoulders leaned forward — as I made a bolt for the door before losing consciousness.
He said I opened my eyes and just stared up at him, blinking, for minutes. He said he kept asking if I was okay, but I wouldn’t answer. People were gathering around, offering help. A woman in a tailored black dress and heels sprinted to a gas station across the street for juice, while my husband squeezed peeled clementines into a wine glass offered to him.
My fear transformed on a dark, cold floor. I was no longer afraid of the secrets I kept. I was afraid to die with them hidden in me. Afraid that my body would leave me. I was afraid that my mind would still be trying to call out from a disconnected, mute form, as I gently floated a few feet above.
A few weeks ago I woke up three times in one night. I jumped out of bed and raced across the apartment to the kitchen where I expected to see something smoldering on the countertop. The smell was so strong.
Each time, I checked the stovetop and the oven, the crockpot and the cord snaking from behind the microwave. Everything was off; everything was fine, no trace of fire.
I used to hear voices. Gruff man-voices softly calling my name from the shadowy sides of tool sheds. A woman shouting HEY from another room while I showered.
Crying, always far away.
I have to instruct my limbs when it happens. I have to remain as conscious as possible, employing the parts of my brain unaffected by a simple partial seizure — a sudden flurry of electrical messages scattered in a section of my brain. I have to remain calm, else the surge triggers another and another and then shuts the whole brain off for a moment. Like the light switch in my childhood bedroom, me already tucked under the covers, the sense of dread when my mother would poke her head in the doorway one last time to say goodnight, raising her hand to the cream-colored switch and then my heart pounding in anticipation of the sudden darkness.
But the light comes back on. My eyes eventually open, and I’m able to explain now. With one lumpy sounding medical word, I posses a label that carefully introduces me to the rest of the world. Like a “Hello, My Name Is” badge, I can awkwardly explain to witnesses that I’m okay. I’m not drunk. I’m not dying. This is a part of me. It’s just epilepsy.
A doctor looked at the waves of my brain printed out, scroll-like; a language scratched in distressing black lines. The story embedded in those lines explained a life filled with tremors of disconnection. It offered a single word for the visions, the unsteadiness, the constant awareness of my body that most people mistake for a fidgeting need to be released from some discomfort.
Lines on an EEG. Spikes of brain activity. Left temporal-lobe seizures. A malfunction of my brain in its language center and the location of auditory and visual interpretation of information. The hippocampus and amygdala shocked while deciding what memory to label important enough for long-term storage elsewhere in the brain.
The demons crawling through my walls as a child were simply a misfire of electrical impulses just above my ear. The voices I heard calling to me from the backs of rooms and around corners were repeats of auditory memory receiving a misappropriated jolt; words I’ve heard before. Deja vu. The confusion, the inability to speak, the rocking instability, the panic and fainting and sudden urge to crash through drywall and cement, were simply seizures.
When I told them, my friends moaned, “Oh, God! Really? I’m so sorry.”
My parents reassured, “I love you, I knew something was going on.”
My husband asked, “What do we do now?”
My heart — still the soul of a child confessing violent dreaming to her mother’s widened eyes — took in the diagnosis and replied: Of course.
Now, when the nightmares come, when I wake with waves of nausea or an explosion in my head, when I trip over nothing because my right eye has sagged and my vision is something like vertigo on flat ground, I take a breath. I find a safe place to lean or sit. And I wait for the shadows of my mind to pass over me like a thick white cloud in front of the summer sun.
Ellee Achten is a freelance writer, editor, and photographer living in Southeast Ohio. She is a graduate from the New York Institute of Photography, and holds a bachelor’s degree in magazine journalism and a master’s degree in creative nonfiction from Ohio University. She is a regular contributor to Rewire.News, and has worked as the assistant editor at the New Ohio Review literary journal, and assistant editor for Proximity Magazine’s BORDERS issue. Exploring issues of home, health, and connection, her written work has appeared in Brevity, Proximity, Alimentum, Southeast Ohio, Ohio Today, Outdoors Northwest, World Water, and elsewhere. She writes news and features, cultural criticism, book reviews, essays, and fiction, and is currently working on a memoir, chronicling her 24+ childhood homes across the country. Her photography has appeared in Ohio Today and Ohio Women magazine, and other alumni publications and venues for Ohio University, as well as local news and regional online news venues.