Jill 30

The View from the Window

By Anastasia Jill

“We’ll gaze at the sky and try to guess what it’s all about.”
—Noel Coward

Naegleria fowleri, colloquially known as a ‘brain-eating amoeba’, is a species of the genus Naegleria, belonging to the phylum Percolozoa, which is technically not classified as true amoeba, but a shapeshifting amoeboflagellate excavate.

From the hospital window, each day began the same: American flags were raised beyond the palms and into the sky. People with big bags stuffed with blankets came to visit loved ones, or say goodbye; they themselves never know until day’s end. There were flowers in the courtyard; big bursts of vibrant petals, all red and yellow and orange, dahlias, maybe daisies. Something cheap and bright to say, “Everything is going to be alright!”

Ambulances screamed as they left, louder so when they returned. The streets were flush with people, nosey people, until it rained. Then, there was grey; mounds of grey clouds stacked like mashed potatoes with lightning streaks of butter offset by the rain. Fleur wanted to run in that rain, or bask in the sun. But she was in a coma.

Now, all she could do was stare out the window.

Not literally, of course. Her eyes were taped to prevent drying, leaving a small sliver of pupil that shouldn’t have been able to see. She heard and felt on her own—warm hands, gentle cheek kisses, the grind of her blood through tubes, the gunk they call ‘food’ being drained down her nose. It stood to reason that she remembered the skies, colors, and faces that passed by, too.

When she wakes up, and by some miracle survives, no one will believe what she says. She didn’t know what she was seeing, because she was in a coma. That’s just common sense. She’s imagining things, and yes, maybe she is. But she could hear; that she knows. She will understand what happened. They may have been dreams, visions, a story, but she insists she saw the world through her milky, obtunded lids.

She was in a coma, but she still will know what she saw.

Only about three people in the United States contract Primary Amebic Meningoencephalitis per year. However, the infections are almost always fatal.

The pediatric I.C.U. doctors visited her room once a day, hovering in a cluster of code carts. They wear identical evergreen scrubs and pristine, sensible shoes. The attending had a white coat and a golden stethoscope. He was short and pale with red hair and freckles. His voice was high-pitched; he’s hard to understand, but she listened and learned exactly what had happened.

She was having dinner when she became violently ill. The ambulance was called; she reported a headache and stiff spine. She’s twelve, and “you know how kids are with germs.” The triage nurse suspected meningitis. Then, Fleur had a seizure and fell to the floor.

For a few days, she slipped in and out of consciousness as they vaguely administered antibiotics and breathing treatments. Four days later, at the doctor’s prodding, her mothers mentioned a recent trip to the local lake. In summertime, the waters are especially warm. Fleur loved diving, snorting the water in and out of her nose like a plant photosynthesizing light. They repeated her lumbar puncture and got a biopsy of her cerebral spinal fluid, confirming the presence of Naegleria fowler, Primary Amebic Meningoencephalitis, better known as the brain-eating amoeba.

She lost consciousness and was admitted to the intensive care unit. That day was a flurry of intubation and intravenous medications as her lungs and heart struggled to keep the body afloat. They expected her to die, especially since treatment was delayed. Diagnosis within hours was crucial for survival. It had been days. Even if she lived, there would be damage, and she would be permanently disabled.

She heard the conversation, one mother sobbing, the other stoic. The doctor warned them the prognosis was bleak, saying, “Begin making funeral arrangements,” and “Are you interested in her being an organ donor?”

The same doctor had less tact now, spoke clinically in the absence of her moms. He rattled off lab values and long medication names while the residents all took notes. She’d been turned earlier this morning to prevent bed sores. From this angle, all she saw was their feet.

Their sneakers were crisp, bright, new-looking against the linoleum. The nurses and orderlies, by contrast, have older shoes, black and worn by wear. They were the ones working, hovering nearby or cleaning her messes, running from room to room with bags of fluid and liquidized food or big machines, or best yet, patting her arm, stroking her hair, or putting soft balms on her lips.

While the doctors discussed her demise, a nurse named Shanice bent to her ear.

“Don’t listen to them, baby,” she said. “You just focus on yourself. You’re gonna be alright."

It was hard, most of the time. Doctors and specialists poked at her body with fingers, needles, and tubes. Parental visits were full of tears. Occasionally their rabbi visited to pray, or answer her mothers’ questions with even more questions. The television was tuned to “elevator music” or talk shows most of the day. Fleur would have been bored senseless, if not for the window.

The world existed outside this room, and oh, how she missed the outside.

Daytime was most interesting, especially with construction workers across the street. A man stands on the roof of a building with too many windows, like an aquarium turned on its side. Blue collar, no tie. Hands crossed on top of a beer belly. Perhaps he wants to jump. Fleur wishes she could, right now. If given a choice, she’d unplug herself from the wall, abandoning the ventilator and the vasopressors and leap from the window and into the dirt.

“I’m too young to die,” she thought.

But she might.

So what is the point?

At night, there was nothing, only streetlights that tried to be stars. She was not one for wishing, but did so regardless, hoping it was heard by nebulas and not discharge lamps on lopsided, falling poles.

People become infected when water containing Naegleria Fowleri enters the nose, usually while swimming in the hotter summer months.

The hospital Fleur was brought to was one of the few with Miltefosine on site. The drug, used to fight the brain-eating amoeba, was administered through her feeding tube.

From there, they waited for the body to heal itself.

There are other treatments; off-label medications, or what she hated the most, therapeutic hypothermia, where her body temperature was forcibly lowered to thirty-two degrees Celsius. A large needle was put through a vein on her thigh, injecting frigid fluids throughout her body. Ice packs are shoved behind her knees, her armpits, sandwiching the circumference of her neck. Convective air blankets are tucked into her sides.

Fleur hated this bed and her treatments. It was escapism—why she looked out the window. Outside was the best place to be. Each normal day was spent swimming or mudding or playing in the parks. Almost a teenager, she should have grown out of play by now, but she hadn’t, and never will.

Even now, all she wants is a proper swim.

She remembered the day she likely contracted the amoeba. There was a lake by her house she’d run to after lunch and jump in head first. She never thought anything bad could come from it. Growing up in Florida, she’d heard warnings of the brain-eating amoeba on the news. It was usually young boys contracting it from water sports or mudding. She’d been worried more about gators or water moccasins. That day was especially hot. She returned home with a crusty burn on her shoulders and back. Her stomach hurt and her head spun but she assumed it was the warmth.

In the hospital bed, she felt stupid. She should have been more careful.

She knew that now.

When Fleur was first brought up here, she waited in the hall while the orderlies prepared her bed. A boy was hooked to the breathing machine, his mother and brother in twin masks, gloves, and bright orange paper gowns. Their speech was broken—by tongue and by grief—but their eyes spoke through goggles: a language of grief, for the grievers alone.

Fleur and her family are learning it all too well.

When her mothers come to visit, their voices are small as a dew drop. Their dialogue is tender, filled with tears, silence, and tentative goodbyes. Goodbye could come at any time. Her blood pressure could drop, despite medication. The delicate hum of her blood could stop as her brain shut down for good. Her body could simply give up; it was expected, even.

“Well, her prognosis is poor.”

How many times had she heard the doctors say that? How could they know she heard their every word and made her best efforts to see their bald heads and starched white coats, sirloin-filled bellies and thick nylon shoes. These doctors, they spoke as if she were already a cadaver, a study in decay.

She sees their lack of empathy.

She wants to scream, “I am a person!”

She often thought of the boy in the room next door, wondering what his affliction was, and if he would live. His room was similar to hers, as were his treatment tools. She recognized the special blankets, the femoral vein needles, the breathing machine, and most of all, his family’s pain. She wondered if he liked lakes, like her, or was unfortunately struck by something in his shower, or a water tank. Would the boy be disabled too, or was his body beyond repair? They were both too young, she thought, to be up against such odds.

Yet, here they were.

Fleur’s best friend has autism and ADHD. He was diagnosed when he was young. He talks with the wrinkled voice of an old man, already worn down by mistreatment. Teachers, peers, even his own parents treat him as less than, a burden, all because he is “disabled.” But he is smart and compassionate, and knows a lot about stars and space. Fleur will be disabled too, if she lives long enough to see it. She worries about healing, if she heals at all.

There was nothing she could do but stare out the window, at the sky, and try to see to the other side of the powder blue.

Most cases of primary amebic meningoencephalitis caused by Naegleria fowleri infection in the United States have been fatal. Symptoms begin within nine days of exposure. Death typically comes within eighteen.

Occasionally, there were scans. Carefully, they took her to the M.R.I. or C.T. machine. Each room she rolls by, she wonders, why is he here? Why is she here? Why are they here? Ventilators pulsed, renal replacement machines spun blood turntables, feet were strapped to padded green boots that declare DO NOT WALK.

One day, she was stopped in the hall while they fixed her bed. The boy on the ventilator she saw the first day is gone. The next day as well. And the next. And the next. His mother and brother are not there either, but the crash cart stood nearby. She hadn’t heard the alarms or codes, but that meant nothing. In the I.C.U. they are one ring in a cacophony of panicked noise. Her eyes lingered on his empty room until she was wheeled into her own.

Once back, wires were glued to her head. An E.E.G. scan checked for brain activity. She heard the doctors comment on the swelling, her skull overstuffed like a bear full of cotton. Fleur was scared; this meant the end.

She didn’t want to think of that. Not yet.

During the test, she was turned toward the window. From her favorite angle, she can see people enter and leave the hospital. Most days, a man in a neon vest digs up rose bushes beneath an American flag. His skin is Florida tanned, but his hair, a sunkissed blonde. The flag flies above him. That day, it was half-mast.

Fleur wanted to know who died.

Lots of people, she supposed—it is a hospital, after all. But the flag indicated it was someone important. Not that boy next door. He’s just another kid who was sick or hurt, and maybe dead. No, definitely dead. And he was gone—just gone. No fanfare involved; just an empty bed and a half-mast flag for someone else.

The scan concluded, but the wires stayed on her head. A sleepy sun crawled away, and the night began. Streetlights glimmer, their knobby lights blinking with the stars. As usual, she could not tell which was which.

Her mothers remained well past visiting hours. They were silent and sad. They both prayed, like she wished for recovery.

A nurse closed the curtain.

Fleur wilted against her sterile, icy bed.

The scans came back with good results. The swelling, somehow, had come down. On the eighteenth day, when Fleur was expected to die, she opened her eyes. She still could not talk or move without pain, but she was aware. Days later, she could breathe.

She had, against all odds, survived.

Healing would be a slow process. She struggled on exertion. Her whole body felt like a deflated balloon. But the sun glowed the same beyond the window, overseeing her healing and growth.

After a week, she was moved from intensive to critical care. From the stretcher, she saw the next room. The little boy, spine like a stem bent in his wheelchair. An oxygen tube crossed his face, plastic roots hooked behind his ears and nose.

His mother was there, keening but a little more upright. The window glowed behind him, the courtyard flowers brighter from a lower floor. His brother ran past her stretcher and into the room. He said, “Sorry, the bus was late.”

As Fleur was wheeled into her room, she heard the boy speak. “It’s okay.”

After 35 years without a Naegleria survivor in the United States, two children with Naegleria fowleri infection survived.

[Author’s Note: Cited or paraphrased information on Naeglena Fowleri and its treatments are from the Center for Disease Control and Prevention, National Library of Medicine, and the Impavido manufacturer's website]

Anastasia Jill (they/them) is a queer writer living in Central Florida. They have been nominated for Best American Short Stories, The Pushcart Prize, and several other honors. Their work has been featured or is upcoming with Poets.org, Sundog Lit, Flash Fiction Online, Contemporary Verse 2, Channel Magazine, and more. Follow them on Instagram: @anastasiajillies