“I have that Italian sleeping disease,” my mom says, liberating her Egg McMuffin from its wrapper. “The one that kills you because you never sleep again.”
“You don’t have that sleeping disease,” I say, parking the rental car.
“And how do you know so much?”
“I hate to say it, but you’re not even Italian.”
“Helga says everyone’s a little Italian.”
She shrugs and wipes her mouth on her sleeve. “My friend.”
In front of the emergency entrance of the hospital, two paramedics struggle to load a stretcher with a body covered in a white sheet into an ambulance. They almost have it when the stretcher tips sideways and a corner of the sheet slides down, threatening to expose the expired occupant’s face. We watch in silence, riveted by the possibility of seeing a corpse while polishing off our Extra Value Meals.
“Well, at least he doesn’t have to worry about sleep anymore,” my mom says, pointing a perfect oval of hash browns toward the stretcher.
Leave it to my mother to envy the dead.
My mom’s insomnia began around Thanksgiving with worry over the instability of her temp job, her elusive retirement.
By Christmas, a Dr. Feelgood prescribed her a truckload of Ambien with a liberal refill policy.
By the New Year, she’d uncovered three decades worth of regrets.
What kept her up at night revolved around the Holy Trinity of Remorse: Booze, Bad Men, and Bankruptcy—the debt due to a psychic hotline habit she’d developed in the 90s because of the first two.
When she took too many pills and still couldn’t sleep, my mom started roaming the aisles of Walgreens in her slippers in the middle of the night, buying over the counter cold medication and Ambien-chatting with the check-out staff (hence her friend Helga, a minimum wage FDA-approved pusher in a blue smock). The cocktail of sedatives and anti-histamines left my mom perversely wired. Soon her agoraphobic personality transformed into that of a midnight debutante who knew the inner lives of drug store clerks working the graveyard shift within a five-mile radius of her condo.
My mom, the Sudafed socialite of Chicago, called me in Seattle, fresh from an Aisle 4 gossip session. She could barely catch her breath. She couldn’t remember what she took or how many.
“I don’t know what’s wrong with me,” she said, pushing blooms of static through the phone. “What if…” she gasped, “What if I’m a shadow who’s lost her person?”
Now, weeks later, a social worker at the hospital asks my mother questions. When did you last have a bowel movement? Can you describe your hallucinations? He looks like the Fonz from Happy Days, a bona fide greaser with a leather jacket and pompadour. He even has a comb sticking out of the back pocket of his rockabilly jeans.
Is it okay for a person in charge of patient intakes at a mental health facility to look like an outdated version of the all-American bad boy? I’m not sure, but it’s soothing somehow, that over time a sense of danger can stale into a caricature of itself.
Out of curiosity I look up “Italian sleeping disease”. To my surprise, it’s a real illness, though very rare and weird as hell—WebMD gold for hypochondriacs. Called Fatal Familial Insomnia, or FFI, the disease is caused by a genetic protein mutation, originating in Italian families in Venice. FFI starts with a progressively worsening inability to sleep, resulting in panic attacks and extreme paranoia, followed by hallucinations and the gradual loss of the ability to walk or speak.
The final progression of FFI is a six-month period of twilight dementia, during which patients are unresponsive, trapped in a state of pre-sleep limbo. If some mobility is retained, they stagger around in a zombie-like state.
In twilight dementia, patients often mime bedtime hygiene rituals—brushing teeth, combing hair—just before they slip into a coma and die. However, the mind’s cognition remains intact until just before death. As one sleep scientist puts it, “Inside your brain, the traffic light that controls activity is perpetually green.”
A dairy farmer in Wales stopped sleeping. So did a high school music teacher in Pittsburgh. There’s a 65-year-old man in Thailand who claims he hasn’t slept since 2006 but still carries 200 pounds of rice a few miles every day, just as he has always done. He says he can no longer tell the difference between being asleep and awake.
In 1943, a woman named Ines Fernandez was standing at the door of her cottage near Caceres in southwest Spain, watching a religious procession pass by. I yawned and a searing pain went through my head, she says, and I haven’t slept since. Ines describes agonizing years spent sitting in an armchair, watching her husband sleep. But when her husband died, it got worse: He’s gone and I can’t stand the terrifying loneliness of the night.
My mom worked in the Chicago printing industry for thirty years. For much of that time, she designed and assembled atlases and maps for her company’s main client, Rand McNally. She spent her days hunched over a light table, etching and stippling plates to prepare them for ink, tracing over landscapes and topographies with razor blades.
Fixed coordinates steadied her.
Eventually the process of printing maps became digitized, and manual craft was replaced by software with imperialist names like TNT Maps and World Creator. My mom never kept up with the technology and was eventually laid off during the recession in 2007. Since then, she’s been temping at large corporations, performing daily cog-in-the-machine tasks on contract for a few months to a year at a time, in between bouts of unemployment.
When I was little, she would bring me into the print shop on weekends. She was a single mom and money was too tight to afford a babysitter. As my mom worked, she muttered the names of rivers and mountain ranges under her breath. I would lean in as her fingers moved, trying to hear where she was in the world, her face illuminated by light.
When the Soviet Union fell in the1990s, my mother redrew the boundaries of the new Eastern Bloc. She traced over country borders, her pen rising and dipping across the jagged lines of the Caucasus.
She said her hands moved like a seismograph during an earthquake.
There’s a joke about the supercontinent my mother likes to tell:
I used to be in a band called Pangaea.
But we broke up.
My favorite place has always been somewhere else. This is what my mom likes to tell people to explain why I work in global health. Why I live 2,000 miles away and hardly ever visit. Looking at my passports, it’s hard to disagree with her. Five continents and over forty countries since I left Chicago almost twenty years ago. I keep the old booklets in a shoebox, along with train tickets, love letters and drug store receipts for bug spray and diarrheal medication.
As a child, I was known for my vanishing acts. Department stores, playgrounds, parking lots—I was always wandering off, captivated by strangers, lost in my own mapless universe. When I was five, I spotted a pair of legs at the Lincoln Park Zoo that looked like they belonged to a former pre-school teacher who had recently left my daycare center. I was eager to discover the life she had abandoned us for, the life she was living now, so while the rest of my class pressed their noses against the hissing cockroach display, I followed her out of the nocturnal animals exhibit. After a few minutes, I suspected it wasn’t the teacher after all, but still I followed her. The legs and I got all the way to the sea lions before the woman attached to them turned around and found me behind her, a pint-sized shadow bewildered by my own wanderlust. Not only was she not my former pre-school teacher, she bore no physical resemblance to her. Even as a small child, my mind was inventing excuses to wander off into the unknown.
I didn’t jump on a plane home the first few times my mom called, worried she might take too much. Instead, I screamed at her: JUST STOP TAKING THE PILLS!
I didn’t go home after a neighbor brought my mom to the emergency room for an overdose. I was hallucinating, crawling on my hands and knees in the garage, my mom said. A television repairman showed up at 4am to fix the cable. I thought I heard your voice.
Instead, I threw myself into work. I jumped on planes to the Philippines and Vietnam. To China, Nepal and Bangladesh. I roamed airports at 2am, floating through terminals with my carry-on bag. The jet lag melted the world around me into sentimental mush. I was touched by the simplest of gestures: an old man helped a little girl tie her shoes; a janitor fished a piece of paper from his sweepings and read the discarded note. I fought back tears on a train station escalator, every nerve alive with the chaos of exhaustion. Outrunning sleep was the only loyalty I had to give my mother: a needless, self-punishing gesture. An act that somehow bound me to her when I could not bring myself to take care of her, to witness her suffering. I’ve always downplayed my relationships and successes to her, muted my own happiness because I considered it a betrayal. I thought if I was alone and unhappy, like she was, I was being a dutiful daughter. I don’t know what it has done to me all these years, attempting to live inside her loneliness from a distance, enveloped in its cocoon, as if it were my own.
I couldn’t bring myself to go home, so I went everywhere else.
Shortly after my mother’s Ambien overdose, her sister called me from Arizona to tell me something I never knew. About my mother’s long-term hospitalization for an eating disorder as a teenager, about her transition into living at a halfway house.
My mother, who is 5’2” and slim, has always had issues with food—not eating, constantly dieting, trying to lose weight. Her behavior towards food, while conspicuous, never seemed too different from that of other girls I knew, myself included. Sometimes it’s difficult to distinguish a pathology from just coping with the everyday pressures of being a woman.
My aunt went on to tell me something else about the halfway house. About what the men did to my mother there. They’ve never spoken of it. My aunt knows very little, a few muffles overheard from my grandparents talking behind closed doors. She explained the limitations of the time when it came to treating eating disorders and mental illness. But you have to understand, this was the 1960s… She was trying her best to conjure an image of Neanderthal doctor, knuckle-scraping his way around a cave in a white coat and stethoscope. But I was stuck on what she’d said earlier:
The day after checking my mom into the hospital, I grab a Hefty bag and fill it with clothes. I don’t know how long she’s going to stay, so I’m sure how much stuff to bring. At the hospital, I sign in at the front desk and take the elevator up to the third floor. I’m a few minutes early for visiting hour, and a small crowd has started to gather in the hall. All along the perimeter, closed doors led to different pathologies. Adolescent Ward, Chemical Dependency Ward, Eating Disorder Ward. At the end of the hall is where they put her: the Adult Ward. The nuthouse equivalent of a junk drawer.
A phone, grimy with fingerprints, is mounted on the wall. Next to it, there’s a sign: HIGH ELOPEMENT RISK: DOORS MUST REMAIN CLOSED AT ALL TIMES.
Though meant to warn against patient escape, I can’t help but picture a mob of benzoed-out newlyweds staggering through the doors in wedding gear, filling the hall with heavily medicated laughter.
The longer I stare at the sign, the more it disturbs me. Elopement risk. Something about the dissonant elegance of the language, how it further widens the chasm between patient and civilian.
I look around the room at the other visitors. Everyone avoids direct eye contact, keenly aware that, collectively, we are the kind of people who are closest to mental patients. Instead, we covertly size each other up, until the hallway starts to resemble a laboratory of failed human experiments. Near a drinking fountain, a guy with a Frankenstein forehead pops antacids like candy—no wonder his indentured servant/sisterwife is doing time in this joint. Next to the elevator, a woman clutches a drool-stained copy of The Giving Tree, adult-sized footed pajamas covered with tiny red hearts draped over her arm. I look around for the baby monkey she surely pushes around in a pram, when I catch a glimpse of myself in a window—sickly pale, hair piled on top of my head in a greasy nest, dark smudges of mascara ringing each eye. I hadn’t packed enough warm clothes for Chicago winter, so I’m squeezed into one of my petite mother’s v-neck sweaters, which hugs my 5’9” body like a wool corset. I look like the love child of a Reagan-era Republican and a Tim Burton character.
I see my mom through the window, nervously pacing the linoleum, unsure if I’ll show up. I try to catch her eye to let her know I’m just beyond the door, waiting, but the staff don’t let patients get close enough to look out.
High elopement risk.
I’ve always liked the clean anonymity of hotel rooms. There is unbridled joy in little pre-packaged soaps, so much so I can hardly speak of it. Beds routinely made by an invisible hand, fresh towels continuously stocked—a seamless dependability that everything used and unmade will be replenished and re-made, the illusion of existence inoculated against chaos. Life staged as a dress rehearsal on the set of a play. The magnetic key card, the silver room service tray—props that signify of a kind of separate togetherness shared among 200 strangers.
I spread the contents of my carry-on around the room. In the bathroom, I line up my toothbrush, toothpaste, razor, a few bobby pins. I try to make myself as big as possible in the bed, fanning out my arms and legs like da Vinci’s Vitruvian Man. I lie there like that, spread eagle, and watch the clock push through 2am, 3am, 4.
But the air feels thin in all this space. This room, this outsized container for my body. I wait for that voice: Look at me. Look how far I got away from you. But it never comes.
It turns out I never wanted her to know, not really.
I keep a notebook of all the towns I’ve traveled through with ridiculous names: Cat Elbow Corner, New York. Tightwad, Missouri. Sweet Lips, Tennessee.
My favorite: Big Ugly, West Virginia.
In 1925 Dr. Charles Burr, a clinical psychologist, studied the effects of sexual abuse on young children as they aged. A taboo subject at the time, he lumped these abused children into a group of other kids who exhibited behavioral disorders. All of these children seemed healthy at birth, started to develop normally during childhood, but then suffered psychological breakdowns when they entered adolescence. He was particularly concerned with youth who were subjected to an external strain or stress so great that even the best-born child cannot successfully resist.
When analyzing the broad effects of childhood trauma in the publication of his research findings, Burr states:
For brevity’s sake, I will omit the girls.
Once, in Oaxaca, I stumbled upon two streets meeting at a quiet intersection next to an abandoned leather factory.
Calle de la Noche Triste. Calle de Ninos Heroes.
Since then I’ve wanted to say to someone, Meet me at the corner of Sad Night and Little Heroes.
71% of the Earth is ocean, two-thirds of which are considered “high seas”, meaning no one—no entity or sovereignty—can make a territorial claim of ownership.
Nearly half the world belongs to no one.
Before she was admitted to the hospital, my mother called one night, wired on a cocktail of sleep medication.
“Tell me about the places that are gone,” I said.
“The Former Yugoslavia, Upper Volta, and the tiny apartment on Paulina where you lost your first tooth,” she said. “That building is a salvage yard now.”
There is no name for so much of what happens to us.
It is hard to locate where in the body the so-much no-name happens.
Sometimes we need a very long way to describe what brevity cannot capture. Degrees of latitude and longitude; fixed coordinates for each experience.
We can find some of these places on maps:
Location: North Island, New Zealand
Māori translation: “The summit where Tamatea, the man with the big knees, the climber of mountains, the land-swallower who travelled about, played his nose flute to his loved one”
Location: Isle of Anglesey, Wales, United Kingdom
Welsh translation: “Saint Mary’s Church in a hollow of white hazel near the swirling whirlpool of the church of Saint Tysilio with a red cave”
Location: a farm in the North West province of South Africa
Afrikaans translation: “Two-Buffalos-Shot-Totally-Dead-with-One-Shot Fountain”
Location: a hill in South Australia
Pitjantjatjara translation: “Where the devil urinates”
Sometimes I wake up and think:
I can’t take one more unknowable thing.
In 1973, the psychologist David Rosenhan conducted an experiment, the goal of which was to test the reliability and consistency of psychiatric diagnoses. Healthy “pseudopatients” who never had a history of mental illness feigned auditory hallucinations in an attempt to gain admission to different psychiatric hospitals in various locations in the United States. Hospital staff were not informed of the experiment. Apart from providing false names and employment details, pseudopatients truthfully reported biographical information.
During their initial psychiatric assessments, all pseudopatients claimed to hear voices that said the same three words, in repetition: empty, hollow, thud. Rosenhan selected these words because they vaguely suggest existential crisis. Pseudopatients reported no other psychiatric symptoms. Then, once admitted, Rosenhan instructed the pseudopatients to “act normally”, to report that they no longer heard voices.
Pseudopatients were admitted to 12 different psychiatric hospitals across the United States, including underfunded public hospitals in rural areas, urban university-run hospitals with excellent reputations, and one private hospital. Though pseudopatients presented with identical symptoms, seven were diagnosed with schizophrenia at public hospitals, and one with manic-depressive psychosis at the private hospital. Their stays ranged from 7 to 52 days, with an average stay of 19 days. All were discharged with a diagnosis of schizophrenia “in remission”. Rosenhan interpreted this as evidence that the perception of mental illness, even by health care providers, is an irreversible condition rather than a curable one.
During the experiment, none of the hospital staff could tell the pseudopatients were faking their symptoms, although many of the other psychiatric patients seemed to be able to identify them as impostors.
Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Empty. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow. Hollow.
For brevity’s sake, I will omit the girls.
Visiting hour at the mental health facility takes place in a common area called the Compassion Room. The décor, with its large round tables and self-esteem posters, could double as a middle school teacher’s lounge.
My mom and I stake out a couple of chairs against the wall, right below a poster that says, Be yourself. Everyone else is already taken. None of the patients are allowed to wear shoes, so the hospital gives them all bright blue socks with puffy smiley faces. When my mom leaves to get us coffee, a man in his mid-fifties shuffles over and introduces himself.
“Hi, I’m John,” he says. “The Casanova of the Ward.”
“Nice to meet you,” I say.
My mom returns with two steaming Styrofoam cups. John does a stage bow, grabs a handful of crayons off the table, and walks away.
“Casanova of the Ward.” She rolls her eyes. “That’s like having the highest IQ on the short bus.”
“Mom,” I say. “I don’t think you’re supposed to talk shit about people in the Compassion Room.”
Patients have daily group therapy sessions. The social workers encourage them to share what they get out of the discussions as part of recovery. One day the topic is Found Families, the non-DNA related people we choose as stand-ins for our biological disappointments.
“So,” my mom says, blowing into her Styrofoam cup. “What are they like, your Found Family?”
I take a sip of coffee, thrown off by the request. My mind drifts to the family she tried to find, the men she tried to keep. My father, who skipped town when I was a baby, leaving a rap sheet of petty theft and drug possession in his wake. My stepfather, a man who lived with us for nearly a decade. He liked to pretend his hands were roaches and scurry his fingers along my bare arms as I screamed. He showed me how to break into the Holiday Inn pool for a free swim and afterward he made origami swans out of cocktail napkins at the hotel bar, folding the paper just right so the swans had tiny palm trees for eyes. I smell him whenever my wet hair drips on dark wood.
I look out the window.
I’ve been quiet so long the light has changed.
In a different life I would tell her: This is what the world looks like when it moves on without you.
A patient, a skinny blonde woman, sobs when her girlfriend doesn’t show for visiting hour. The magnitude of the woman’s agony, on full display in the Compassion Room, is distracting. When her girlfriend, a tall brunette in volleyball shorts, shows up thirty minutes later, the blonde woman jumps into her arms and wraps her legs around her middle. The patient hovers there for ten minutes, at least. The rest of us steal glances over in their direction, wondering what might happen next. Before long, the patient starts grinding slowly up and down her girlfriend’s torso. The volleyball brunette holds her there, showing no signs of strain in her kneepad-lined legs.
After a while, a nurse comes by and breaks things up. “This is a hospital,” she says, “you have to act appropriately.”
There’s a collective sigh of relief among the rest of us in the Compassion Room. We had come to visit parents, siblings, sons and daughters only to have it upstaged by an impromptu dry humping session over by the Dixie cups.
But as I leave the hospital, I have a sinking sensation that I’m in the wrong for judging that patient, that I had momentarily reached for the low hanging fruit of false morality in order to brush a more complicated truth aside. What does that mean to act appropriately in a place where a good percentage of people are pissing and shitting themselves? Or bleeding? Or losing their minds?
I drive back to the airport in a blizzard, thinking about how that patient clung to her girlfriend. Have I ever loved somebody that much? The way she hovered there, so light she seemed to have the hollow bones of a bird.
What a thing. To witness zero gravity surrounded by so much weight.
Jessica Mooney‘s short stories, essays and literary criticism have appeared in Vol. 1 Brooklyn, The Seattle Review of Books, The Rumpus, Salon, City Arts Magazine, and elsewhere. She also works in the field of global health for an international nonprofit, and her scientific research has been published in Prevention Science and the Journal for Health Disparities Research and Practice. Jessica was a recent finalist for the Deborah Tall Lyric Essay Book Prize, and she has received artist grants from the Seattle Office of Arts and Culture and 4 Culture. Jessica was a previous Hugo House fellow.