Breath & Shadow
A Journal of Disability Culture and Literature
Excerpted from “A GREAT PLACE FOR A SEIZURE”
By Terry Tracy
Her nose twitched at the smell of disinfectant.
“Mischa, it’s Dad. Mom is here too. Don’t try to get up. The doctors want you to stay here for a while. You…you…you had two seizures today.”
Her head felt like it had exploded. It had never hurt like this before. She wondered whether it had grown larger just to accommodate that amount of pain. When she looked around questions ran through her head. How did I get into this hospital gown? Where are my clothes? Where are my shoes? Why is there blood on the hospital gown? Where am I bleeding from? She tried to lift herself up.
“Why can’t I get up?”
She tried again.
“Why can’t I get up!,” she shouted.
Mischa turned her head to see the rest of her body bound in white canvas straps.
“Why do I have straps around me? Get these things off me!”
When her father ran to her side, she saw the helplessness in his eyes and forgot her fear in sudden pity for him.
“Mischa, dear, you were at the library. You had a seizure there, and then you had one here. They bound you to the bed so you would not fall out.”
Mischa laid her head back and took a deep breath. A knife sliced through her skull when she exhaled. No more questions. Too hard to understand. No more. Sleep. Sleep. I’ll close my eyes and this will go away.
She awoke when she heard a metal platter fall and teeter as it rocked back and forth. She looked through the slits of her almost-closed eyes to see that the hospital had not gone away. It’s all here. I’m still here. What happened? Why? How? The heavy thud of the headache inside her skull made it difficult to move. She remained still and her eyes darted around the room. Her parents were seated in chairs against the wall, silent and unaware that she was awake. They sat slumped, like children in a principal’s office, cowed in shame and fear. Her father kept pushing his thumbnail into the narrow fissure behind the nail, slowly and steadily tearing the finger away. He had drawn blood from one nail already; there was a thin red line beneath it. The thumbnail continued its tender torture, moving mechanically from one nail to another and then back again.
The sight was at once distressing and familiar. When did I last see him do that?
“We’ve got to get out of this country!”
He punctuated that statement with a slam of the newspaper on the breakfast table and then said, “I want to go back to the United States.”
The first time Richard did this, Mischa and her mother were stunned. Her father had never raised his voice before. They had just heard him shout for the first time, but it was not at them. It was at Chile.
Life had worsened since the coup d’état. General Augusto Pinochet inaugurated his regime by bombing the presidential palace, La Moneda on September 11, 1973. The military moved swiftly to dissuade dissent and silence any opposition. Between September 12 and September 23 the International Red Cross reported that the armed forces had imprisoned approximately seven thousand people in the National Stadium in Santiago. After a few months, that make-shift prison camp had held captive twelve thousand, some witnesses reported twenty thousand.
Under the watch of guards with rifles, men and women were crowded into the stands, in the damp hallways, on the bleachers, beneath the bleachers, on the field, and in locker rooms, dressing rooms, and twisted corridors. Hearing the screams, the pleas and the sudden silence was torture enough, but there was more. Executions, electrical shocks, shackles, humiliation, rape, repeated rape, mock executions, filth, and isolation barely describe the experiences within those walls. Interrogations occurred in the sports facility’s administrative offices. Beatings and torture took place throughout, but the most methodical and cruelest forms were committed inside the bunkers at the cycling track.
The brutal killings occurred in the showers and baths. Heads were repeatedly rammed with rifle butts against white ceramic tiles. At night the showers were turned on and buckets of water were thrown at the walls and on the floors. The bodies disappeared, but the smell and the cracks remained.
People “disappeared” from the streets, abducted by soldiers and policemen. Thousands disappeared. They had protested, handed out political pamphlets, had written a newspaper article with negative allusions, or belonged to the wrong political party. Sometimes they were activists. Sometimes they were journalists or academics. Sometimes they were university students with long hair presumed to be sympathetic to the leftists. Other times they were merely in the wrong place at the wrong time. Soldiers, secret security forces, and police, uniformed or not, took people off the streets, into cars, and then to cells or graves. They were called los Desaparecidos: the Disappeared ones.
Over the years, the National Stadium became a sports arena again and the General built secret detention and torture centers around the country in order to disperse political prisoners. Of those detained, thousands were tortured; another few thousand were tortured and then executed. Their bodies were dumped into mass graves in isolated areas like trash. Looking into the eyes of a survivor, it was difficult to judge who was the more fortunate, the living or the disappeared.
Intimidation made the air heavy. Conversations in Chile, in public, followed a polite protocol, sterilized of politics. People spoke in secret to those they trusted. But sometimes even those they trusted turned against them. Founded and unfounded paranoia spread. Opinions disappeared. Books were burned in fear and in silence. As time went by, even the most outspoken became quiet. Opposition to and criticism of the General seemed to disappear.
When photographs of the General in his gray uniform appeared above the blackboards in classrooms, the parents said nothing, to protect themselves from a child’s indiscretion to repeat unguarded comments. Ignorant and innocent, the children still played in the parks, where vendors toasted and sold caramelized peanuts. Their laughter consoled and reminded adults of life before the coup.
When Mischa’s father exclaimed his intention to leave Chile and return to the U.S., Mischa thought it curious that his voice was so angry and solemn. For her, the thought of leaving Chile was exciting. She was a child, too young to understand politics. The United States was the land of color and sun.
Vacations at her grandparents’ house in Miami were visions of pink houses with palm trees, sky blue pools, neon green Slurpees at the 7-Eleven, and best of all, Krispy Kreme doughnuts. The morning after they arrived from Santiago, Mischa and her grandfather made their ritual visit to the Krispy Kreme on Route 1.
As a child, she pressed her nose against the window to watch the doughnut machine. Thick rings of dough dropped into a pristine metal vat of bubbling oil. They rose to the surface, like magic, transformed into floating pillows. A metal arm pushed the doughnuts onto a black rubber moving belt. Next, a waterfall of white icing fell onto the hot doughnuts and melted to a transparent glaze. When they left the shop, her grandfather let Mischa cradle the green dotted box filled with warm newborn doughnuts.
Mischa remembered her frustration as she waited years for that impending move to America. She lost hope. Her father’s pronouncements lost their association with Krispy Kreme doughnuts, and this custom of slamming the newspaper on the breakfast table became a meaningless and irritating habit.
Her mother always registered her disinterest with an immediate request to pass the marmalade. Mischa would oblige, and the two went about their breakfast as before, while Richard stewed in his opinions about the state of the country.
Now I remember.
Mischa finally placed the image of her father tearing his nails. It was in Chile, the night Mrs. Alvarez cried in their living room. Cristina tried to comfort her with a slice of the Sunday flan and gently stroked her back, but Mrs. Alvarez would not stop sobbing.
“It has been a week. He has not come home. No one has seen Tito. It’s not a woman, it’s not a student. I would have known by now. People gossip. They would have told me if he were having an affair. He never came home on Wednesday. He never came home.”
“There is an answer to all this. I am sure there is an explanation. He will come home,” Cristina said.
Mrs. Alvarez hung her head. Then, she looked up at Mischa’s father and shouted at him.
“Why, Richard? Why? He’s your friend. Tell me why! Tell me! Why should my husband care about politics? He is a professor of English literature! Why did you not stop him? Why? Why did he have to go to a protest in a shantytown? We’re eating. We have what we need to survive. Make him stop! Why does he protest? Why did you not stop him?”
Mischa had never seen an adult cry. She was embarrassed to be there, but too self-conscious to stand up and leave. Her father sat on the moss green velvet chair across from Mrs. Alvarez. Unable to answer or even look at her, he stared down at their Oriental rug. His thumbnail dug into the crevice of one fingernail after another, slowly tearing the skin from alongside the nail until he drew blood. Mischa sat on the floor next to his chair and saw the thin red lines gradually emerge behind each nail.
By the next morning those lines had dried to black. At breakfast, Mischa studied them while she crunched her toast and drank the warm milk made with cinnamon and a spoonful of coffee from her mother’s cup.
Without ceremony, her father stood up to make an announcement in a firm voice.
“We’re leaving Chile. It’s too dangerous. I’m going to find a job in an American university.”
Mischa waited to hear the slam of the newspaper, but there was none. Her mother said nothing, but tilted the coffee cup to her lips and took a quiet sip. Mischa smiled and imagined doughnuts once again.
It’s just like that night in Chile. He’s doing it again, that thing with his nails. She looked over at her father as he stared at the floor and continued his mild mutilation. Her mother stared ahead with empty eyes. Her purse sagged on her lap under her elbows.
A hand pulled back the curtain dramatically. As he entered, the doctor’s unbuttoned white coat billowed behind him, like a cape on a superhero.
“Hello! Well, let’s see what we have here,” he said with exaggerated cheerfulness.
“Why do I have straps around me?”
Her voice quavered.
“Miss…uh,” he began, then took the clipboard off the foot of the bed and read her name. “
“Miss Dunn. Let’s see here. You’ve just had two seizures. This is to keep you from falling out of bed in the event you have another one. But I guess we could put up those rails at the side. Yes, I think that will be good enough.”
He put his head through the slit in the curtain and called for a nurse.
“Hey, Sandy, can you give me a hand? Take these safety restraints off this young lady.”
As the nurse bent over to undo the canvas straps, Mischa smelled wisps of peppermint from the chewing gum she held tightly in her jaw. The nurse moved down her body, removing the straps from across Mischa’s shoulders, stomach, hips, and thighs. The doctor continued as the nurse silently walked in front of him to return to her previous task.
“Miss Dunn, you had two grand mal seizures today.”
He looked to her mother and father and asked, “Does she have a history of seizures?”
“When she was three, she had a fever that ran very high and then it broke when she had a convulsion,” her father explained.
Why didn’t he ever tell me this before?
“Mr. Dunn, I know this is difficult, but let me try to explain.”
Her mother interrupted, “Excuse me, it is Dr. Dunn.”
The doctor smiled with relief.
“Well then, this will go quickly. I recommend a CAT scan, followed by an EEG, and an appointment in Neuro, with perhaps an MRI to follow. What are your thoughts, Dr. Dunn?”
“No, no, no.” Mischa’s father looked at his wife, irritated that she had derailed the conversation.
“I’m not a medical doctor. I’m just an academic. Call me Richard.”
The doctor looked at Mrs. Dunn, annoyed, and then he turned to the patient.
“Miss Dunn, how old are you?”
“Let’s see now. Miss Dunn, have you been taking any drugs?”
“No,” Mischa replied defensively.
“Do you drink?”
“I do not drink. I do not do drugs. I never have. Why are you asking me?”
“Miss Dunn, sometimes seizures are induced by drugs and alcohol intake. It’s a perfectly normal question. I have to examine all the possibilities.”
The doctor looked to her father again.
“Has she had any traumas to the head? Was she ever in a car accident? Did she suffer a concussion as a result of a serious fall?”
Her father shook his head no. Her mother stared into space.
“Does anyone in your family have epilepsy,?” the doctor asked Mischa.
Epilepsy,? Mischa thought. She knew what the word meant, but had never heard it spoken out loud. Her father replied by again shaking his head.
“Miss Dunn, just tell me what happened. Start with the library,” the doctor said.
Mischa recounted the day from the moment she left her mother’s car.
“Then, as I was sitting at the machine I felt like I was outside my body, like my senses were mixed. I saw colors and I felt light. There were green peas and the smell of a cherry. It was hot. I really can’t explain it. Then I was in the ambulance.”
The doctor motioned to the nurse to take her parents away and pulled the curtain closed.
“Miss Dunn, we’re alone. Your parents are not here. I’m going to ask you again and I want an honest answer. Are you taking any drugs, and have you ever taken drugs?”
“I don’t even know where to get them. Why do you keep asking me?”
“When you’ve had two seizures in one day and describe a psychedelic experience of hot peas and cherries, then it’s a pretty reasonable question. Give me honest answers and they can help us explain these attacks. I’ll be referring you to a neurologist to make the final diagnosis, but strictly speaking, after more than one seizure a person is considered to have epilepsy. You’ve now had three in your lifetime. But perhaps we’re getting ahead of ourselves. The neurologists will have to consider some form of treatment. I’m going to schedule tests for next week.”
Epilepsy.The word seemed to hang in the air and Mischa stared at it.
“Miss Dunn, how long were you on the microfiche machine? Miss Dunn?”
Epilepsy. Epilepsy. Epilepsy? She felt as if that word had contaminated the room and if she stayed much longer she would get worse. I have to get out of here. I just have to get out. Now.
“Sorry, Doctor, what was it?”
“I asked you, how long were you on the microfiche machine?”
“Probably about five minutes, maybe even less.”
“Did you move the transparency?”
“Of course. That’s how you look for books.”
Mischa replied with adolescent arrogance. The doctor glared and Mischa glared back.
“Have you ever used the microfiche before?” he asked.
“Yes. When I go to the library I often need to find books.”
The doctor glared again and Mischa stared straight back. You don’t like attitude, well, fine. I don’t care. You just accused me of getting drunk, taking drugs and lying.
He looked down to the clipboard and scribbled. A serious, authoritative voice replaced the fake cheerful one.
“We’ll keep you under observation overnight and do the tests next week.”
“What’s happening to me?” Mischa cringed when she heard her voice quaver. That’s not me. I don’t talk like that.
“That’s really for the neurologist to say. My guess is that the flashing lights of the microfiche probably set off the seizures. Let’s just do those tests. If it’s a symptom, maybe the direct cause can be addressed and you won’t have any more attacks.”
It’s like I didn’t fight back. This isn’t my fault. I wasn’t attacked. It just…it just happened.
Her tongue felt as if it were covered in cotton balls and had been stabbed with a pin.
“What’s wrong with my tongue?”
“It’s probably swollen. You must have bitten it during one of your seizures,” he replied matter-of-factly as he filled out a form on the clipboard.
Your seizures? What does he mean “your seizures”? My seizures? MY seizures? Why “my” seizures? I don’t want seizures.
“It’s typical for a seizure. The swelling will go down. I’ll get a nurse to bring you a cup of ice.”
The doctor pushed open the curtains and said, “Mr. and Mrs. Dunn, you can come back now.”
Terry Tracy has worked as a human rights activist, journalist, and U.S. diplomat. In 2007 she wrote the charter for an association of disabled employees in the U.S. State Department. She has had epilepsy for 30 years. She was born in Virginia and moved around Latin America in her childhood as an army brat. After college she worked as a receptionist, then left to work for free in Honduras at an orphanage. Terry returned to work in a human rights organization in Washington DC, then left for Guatemala to work as a free-lance journalist. By this time her addiction to wanderlust was evident. In denial, she crossed the Atlantic to Cambridge, England and earned a master's degree in an obscure, but nevertheless intriguing, subject: the 16th century Spanish colonial judicial system. When she returned to the United States she joined the establishment. In 2007 she left the US State Department to take turns as a stay-at-home parent. Terry is Asian-Irish American and currently resides in London with her German husband and their Asian-Irish-German-American daughter.
Her book, A Great Place for a Seizure is available on Amazon.com in paperback and Kindle.