Search Results for: cancer

Ten Translations of Care

Longreads Pick
Author: Mary Wang
Source: Longreads
Published: Sep 17, 2018
Length: 23 minutes (5,814 words)

Ten Translations of Care

Illustration by Wenting Li

Mary Wang | Longreads | September 2018 | 23 minutes (5,814 words)

 

1. Care /ker/ [verb], 保护o hù, the process of protecting someone or something.

In January 2018, Guo Zhen, my grandmother, was diagnosed with late-stage lung cancer. A month later, I arrived home for the first Chinese New Year that I’d spend in China since I had moved away 20 years earlier. I came home with my armor ready — my suitcase was packed with a library including Emperor of All Maladies, Siddhartha Mukherjee’s canonical book on the illness; Susan Sontag’s Illness and Its Metaphors, so that my analytical mind could help carry the weight of my emotional one; and Joan Didion’s The Year of Magical Thinking, a manual for grief in the event of the worst-case scenario. I had rehearsed the serene facial expression I’d use when I’d see Guo Zhen in her hospital bed for the first time, and I had conscientiously visualized every IV drip and beeping machine to blunt any potential shock. Yet what I found in our family home was the rehearsal of a familiar routine: Her son, my uncle Fu Yuan, was still battling with his son to choose his homework over his iPad; Guo Zhen still sat on her children’s stool in the morning, washing clothes in a bucket of cold water, and grandfather, Pu Cheng, still bugged her to play their daily chess game, holding up a paper board fortified so many times over that the plastic tape covering it was far thicker than the board itself.

Guo Zhen didn’t know she had cancer, and my family had carefully devised a strategy to keep it that way. Doctors and nurses in the hospital had been instructed to never speak of her illness in her presence, and visitors to our home signed an invisible contract before entering, agreeing to act as if her recent hospitalization was due to a case of pneumonia. I never asked her to sit down when she’d get up after every few bites during lunch or dinner to restock the table with congee, buns, or pickles — I knew she did this out of habit rather than necessity. Fu Yuan and his wife never fought to take over her housework, though we worried about the strain of repetitive hunching on her weakening body. Any deviation from routine risked puncturing the facade of normalcy we all worked carefully to preserve, and, within a month, my family had become a theater troupe improvising their first performance, an intimate Truman Show designed to deceive its protagonist.

At 78, there was no point in performing surgery or chemotherapy on Guo Zhen anymore, and any new miracle drug that might land in the world would only arrive in China years after its introduction on the American market. Besides, the decidedly optimistic belief that cancer will soon become only a chronic illness rather than a fatal one is more of an American specialty — its arrogant nature evident when President Nixon declared a “War on Cancer.” The Chinese counterpart to that phrase illustrates a different approach. As one local newspaper put it, “One third of cancer patients die of fear, one third die of its treatment, and only one third die of the illness itself.”

Since there wasn’t much territory to be won in terms of Guo Zhen’s illness or its treatment, we shifted our efforts to shielding her from the first possibility. As soon as doctors saw the dark spots on Guo Zhen’s X-rays, Fu Yuan instructed them to follow our script. “Don’t let the lao ren” — the elderly — “know,” he said, emphasizing Guo Zhen’s status as a senior to make clear that she was no longer a caretaker but the one who was cared for.

“If a man die,” William Carlos Williams wrote, “it is because death / has first possessed his imagination.” Grandfather Pu Cheng, unaware of the American poet, has long touted his own version of this phrase. Boasting about how he’s never stepped foot in a hospital for himself, he’d say, “Nine out of ten people die from fear.” Even though Pu Cheng was also left in the dark about his wife’s disease — we didn’t trust him to keep a secret from his partner of 60 years — we abided by his logic that a doctor’s diagnosis could be a death sentence in itself. By shielding Guo Zhen from the weight of the doctor’s words, we took over the burden of her illness with our own shoulders.
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Mega-drought and Me

Sebastien Gabriel / Unsplash, Paul Robert / Unsplash, Photo illustration by Katie Kosma

Zoe Fenson | Longreads | September 2018 | 18 minutes (3,732 words)

I kick my heels against the end of the exam table, feet dangling as if over the edge of a dock. One hand on the opening of the gown, the other holding the drape to my lap.

First time seeing this new doctor, now that the old practice closed. I’d expected older, brusque, lab coat, but she is warm and cheery in her crisp blue scrubs and gray hijab. Legs splayed on the low wheeled stool, elbows on knees, clipboard. Reading.

It’s all there on the form, in my handwriting. Age: 29. Reason for visit: annual exam. Smokes: No. Drinks: two to three per week. Wears a seat belt: always.

The drape slips off my lap — why does it always do that? I catch it, shift carefully, try not to tear the paper liner under my bare bottom.

Number of sexual partners in the past year: one. Gender of partner: male.

“So, you’re in a relationship?” She looks up from her clipboard. “How long?”

“Six years.”

“Wow, congratulations!” A warm smile. “So, are you thinking about kids?”

The gears in my brain catch and stop turning. My forehead is suddenly jelly. The drape slips and I pull it closer, keenly aware of my nakedness underneath.

“We’re kicking that can down the road,” I say.

She laughs. “Understood. Just wanted to bring it up, because …”

“I know,” I say. It’s all there on the form.

* * *

My first memory. I am standing at the far end of the hallway, square in line with the bedroom door and the four-poster bed beyond it. There are lights in the canopy, three yellow hollows, and they reflect spaceship beams in the mirrored headboard. I am small, and the floor is close, and the lights are high and bright.

The walls and ceiling are dark and distant. I can feel them looming, hear fantastic hissing creatures in the corners. The bed is a spaceship, and I am standing in the dark, my heart beating cold.

She’s there, in the bed. My mother. I can just make out the pink swell of her belly over the rumpled patchwork quilt. Maybe a sliver of pale forehead above it, and a mop of pillow-mussed dark curls above that. Or maybe not. I am 3 years old and will remember this only in gulps and shivers.

Her belly is full of my siblings. A brother and a sister. They will emerge soon, my father keeps saying. In the meantime, she’s not feeling well. She needs to stay in bed. Later. You’ll see her later.

I watch her breathing. This is not my mother, my fluttering mother, always dashing from room to room, picking up this, noticing that. This is not my playful, silly mother, who reads picture books aloud with an actor’s breathlessness and uses her bare hands to crush cornflakes for salmon patties.

This still, barely-breathing, exhausted creature is not my mother. She is resting, not quite asleep, and I am not allowed to go to her, to see for myself what she really is. Or maybe I am allowed, but terror roots me to the floor.

* * *

Growing up in Silicon Valley, we learn the word “drought.” Drought comes in cycles. There’s less and less and less rain, over a year or two or maybe three. We ration our water use, turn off the tap when we brush our teeth, time our showers. Then suddenly the winds shift and the currents change and everything is blessedly watered again.

For years, I assume that “drought” is synonymous with “summer.” The season of no water, ending each year with the autumn rains. I watch the grasses in the hills turn from plump and green to dry and brown.

I know intellectually that droughts can stretch over years, that rain is relative, that brown grass thrives in summer. But still, I breathe a tiny sigh of relief when the first raindrop hits my nose every fall.

* * *

I’m kicking my feet at the end of the exam table. My mother sits in a chair alongside. Age: 13. Reason for visit: Missed periods. Number of sexual partners: zero.

This is the doctor I will see for 15 years before the practice closes. Dark hair, pink lipstick, lab coat, stethoscope. White clipboard. Low stool. Reading.

“So, how long has it been since your last period?”

“Ten months.”

The doctor raises her eyebrows. “It’s good you waited this long before coming in. At your age, menstruation can be extremely irregular. Just … not this irregular.”

“I know,” I say. It’s been over a year since the first streak in my underpants at summer camp, so dark I mistook it for dirt. Since then, I’ve menstruated twice: once in September, once in January. It’s now October. I’ve started wearing red sweatpants on airplanes, just in case. My mother tucks menstrual pads into the pockets of all my jackets and suitcases, a habit I will keep up — unnecessarily — for years.

“Well, there’s a couple things that could be going on. If you’re OK with it, I’ll do a visual assessment here and then send you to Pat down the hall for a blood draw.” She pulls a pair of blue vinyl gloves from a box on the wall. “Do I have your permission to conduct an external pelvic exam?”

I have no idea what an external pelvic exam is. “Sure.”

She pauses, puts her hand gently on my arm. “Oh, one more thing. You’re not pregnant, right?”

My forehead is jelly. “Right.”

“OK, good.” She breaks out in a hearty laugh. I laugh too, as cheerily as I can manage.

* * *

Throughout my childhood, there are galloping fires in the mountains each summer. We hear about them on the news: ignited by a lightning strike or a smoldering campfire or a cigarette butt, fattened on the sticks and straw left from months of waning water. Sometimes, on road trips, we see the aftermath of a smaller fire: a swath of black hillside, pierced by naked trees.

Each fire is a renewal, I’m told, a violent stripping of the old to make way for the new and green. There are some plants in the California chaparral that reproduce only after the intense heat of a wildfire. Pine cones release seeds; oak trees sprout fresh stems from burnt trunks; wildflowers germinate and bloom.

Her belly is full of my siblings. A brother and a sister. They will emerge soon, my father keeps saying. In the meantime, she’s not feeling well. She needs to stay in bed. Later. You’ll see her later.


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* * *

“You see these two numbers here? The ones labeled FSH and LH?”

The lab sheet is dense with text. I follow the doctor’s pen as it traces around the two numbers. I am 13, and last week I had my feet in stirrups for the first time and needles sipping blood from my veins.

She explains, scratching diagrams and doodles on the back of the lab sheet. Hormone ratios, triglycerides, body mass index (I press my hands together between my chubby, chafing thighs). She draws a little ovary studded with cysts — a string of pearls winding around a grape.

Polycystic ovarian syndrome, she says. It’ll keep me from menstruating, make it hard to keep off the weight I’m already gaining. The most urgent thing now is to make sure I’m shedding the uterine lining each month; if it sits undisturbed for too long, it could grow cancerous.

She hands my mother a prescription for progesterone. “Just to get things started, and then we’ll switch to oral contraceptives for the long term.” And to me, “When you want to get pregnant, we’ll need to talk.”

I nod. My siblings and I were conceived via fertility treatments when my mother was in her 30s. I have time.

* * *

The progesterone makes me sob furiously. My hormones swell and peak each time I take a pill. When I switch to birth control, the crying eases. In its place I feel a growing restlessness, an urge to move out of my body and find a new one.

Over time, I get used to the routine. Every year, a pelvic exam, a panel of tests. I learn to grit my teeth and look away during the blood draw, waiting for the deep sting of needle meeting vein. Sometimes the phlebotomist misses — my veins are slim and deep — and I walk away with bruises.

I stay on birth control throughout high school and college. Twice a month, I get vicious cramps; once a month, I bleed. Each time, it becomes easier to pretend it’s the real thing.

* * *

I am 3 years old, standing in the hall, and there are things I do not understand. I do not understand that my mother is small too, only five feet tall, and that my siblings are straining her body to its limit. That the contractions began in month five — before the babies could survive outside her body — and start up again every time she stands. That she is lying in bed because her body is in revolt, and bed rest is what’s keeping my siblings alive.

I do not yet understand that she has been through this before. A fraught end to her first pregnancy with me, a first bodily revolt. In her seventh month she began having trouble removing her wedding ring. The vision in her left eye slowly dulled, until she couldn’t see out of it.

I was due in March; her water broke on New Year’s Eve. When she arrived at the hospital, the doctors diagnosed preeclampsia, a dangerous spike in blood pressure that had inflated her fingers and muted her vision. The only cure was to birth me. But I was too small to be safely born.

The philosophy behind bed rest is simple: Counteract gravity. My mother was laid flat for a week in the hospital, kept in a state of suspension while the doctors carefully dosed me with steroids and waited until my tiny lungs could pump air on their own. Then they let her contrary body take over, pushing me into the stark hospital light, scrawny and wide-eyed and — fortunately — screaming.

‘Polycystic ovarian syndrome,’ she says. It’ll keep me from menstruating, make it hard to keep off the weight I’m already gaining. The most urgent thing now is to make sure I’m shedding the uterine lining each month; if it sits undisturbed for too long, it could grow cancerous.

* * *

As I grow older, I can feel the summers getting longer, hotter. The rain takes longer to arrive each fall. The hills dry up faster, turning from spring green to summer brown before I can fully register the change.

There are fewer small fires. When the forest ignites — as it inevitably does — the fires leap up hotter and higher. We hear of flames crawling closer to the homes and towns that push into the forest.

* * *

The summer before my senior year of college, I go to Russia for six weeks. Without consulting my doctor, without telling my parents, I decide not to bring my birth control pills with me. I’m 21, single, and curious. Just curious.

Without a complaint, my body simply dries up. No bleeding. No cramps. For a whole summer, no movement in my reproductive tract.

* * *

We’re on our way from Pskov to Nizhny Novgorod. The van bumps and rattles on the rutted road. The other students are asleep or lost at the windows.

I’m chatting with the director of the program, an elegant lady with close-cropped dark hair. We talk about the cold summer rain that lashes St. Petersburg, how I still get startled seeing rain in the summer.

I lift my eyes to the view outside, watch the chilly mist collect on the van windows. “If I ever have kids, I’m going to adopt,” I say, more decisively than I feel.

Her eyes widen. “Good for you,” she says.

* * *

I come home from Russia and start the pills again. My body obediently bleeds.

* * *

Mega-drought. A drought lasting decades instead of years. In the 12th and 13th centuries, the area that we now call California went dry for hundreds of years. We see the evidence in the ring patterns of thousand-year-old tree trunks; the trees grew tall in dry lake beds, then drowned when the rains returned.

In the 1930s, the Dust Bowl — our closest memory of catastrophic drought — scorched the Great Plains for most of a decade. It turned farms into windy wastelands and sent families fleeing west to California. That was an ordinary drought. Mega-droughts last three, four, five times as long. We do not remember what it’s like to live for 50 years without rain.

* * *

“Are you in love with him?”

If the question came from anyone else, I would bristle. But this is my mother’s childhood friend Pam, whom I’ve known all my life. She’s the daughter — adopted — of my grandmother’s best friend, a woman with a raucous laugh and wild storytelling streak. I grew up knowing Pam’s vivaciousness, so like and yet unlike her mother’s. She has a daughter my age who shares her soprano speaking voice, her waterfall of red hair.

I’ve been seeing this guy, the guy who will eventually inspire the new doctor to ask me the question. Pam holds her wine glass with both palms, looks at me expectantly.

“I guess I am,” I say.

* * *

We’re driving in the rain, the two of us. The road is slick, headlight reflections blurring into lane lines. I’m 26, he’s 27, and I’m testing him.

“So, if you end up wanting biological kids, that’s going to be … complicated with me. Because of my health stuff.”

“I mean.” He shrugs. “I’m not opposed to kids, but I’m definitely not ready for them right now. We have time.”

“I understand that. But we’ll need to decide eventually, and it will actually be a decision, you know? We can’t just wing it.”

“That’s fine. I’m happy to take my cues from you.”

“But that’s the thing. I don’t know what I want. And you’ll have equal say in whatever path we decide to follow, so …”

“Now, hold on.” He turns to look at me. “I do not have equal say. It’s your body. We can do exactly as much or as little as you want.”

He’s passed the test. And yet I’m slightly deflated that he’s not throwing me a rope.

* * *

“So, that’s why I’m not eating honey right now. Because of the baby.”

I hear my friend over my shoulder, from the kitchen where I’m pouring myself a drink. At first I think I’ve misheard her, or she’s making a joke. She’s sitting neatly tucked into the table, so I can’t sneak a peek at her belly.

I thought I’d imagined her looking fuller and smoother, though her complexion is of the luminous kind anyway. It all clicks together — the new wedding ring on her finger, the house she and her partner just bought.

“I thought the honey thing is after the baby’s born,” I offer, feebly. We’re all so clueless, the people at this party. Young, urban professionals with cats instead of children.

She’s telling someone the story. It was an accident, a hiccup in birth control. She didn’t realize it for months, until the doctor at her annual exam said, “You didn’t tell me you were pregnant!”

I cup my wine glass in my palm and stare numbly across the room. I can feel the weight of my dry uterus, remember what happened when I played fast and loose with my pills.

When I get back to my boyfriend’s house after the party, I drop onto the couch and sob.

As I grow older, I can feel the summers getting longer, hotter. The rain takes longer to arrive each fall. The hills dry up faster, turning from spring green to summer brown before I can fully register the change.

* * *

There’s a mega-drought coming, scientists say. It’s the swing of a natural cycle, made more violent by the weight of humans on the earth. Dust Bowl refugees sought relief here in the West, and someday we will be seared hotter than they ever were.

I wonder how long California will be livable, how long we’ll be able to drag water into the desert.

* * *

She knew, going in. After me, after the illness, the early birth. She chose to become pregnant again, not easily, with medical help. And in my first memory I am forever 3 years old, standing in the hall, and there are two babies in a body that already fought back against one.

Eventually they, too, will make an early entrance under the hospital lights, screaming. My father will take me to see them in their hospital bassinets, one pink bundle and one blue bundle. One pair of brown eyes and one pair of blue, staring back at me through the nursery window.

They are small, too, but larger than I was, pinker-cheeked and plumper. They will be fine. She will be fine.

* * *

He zips the wedding dress up my back. I step back from the mirror and take myself in. They’re all there, the signs of PCOS, written on my body over the years: the heavy hips and arms and face and belly, the thicket of dark hair above my upper lip, the bald spots in and among my carefully pinned curls.

“You look gorgeous,” he says, and kisses my neck.

During the ceremony, our friends’ surprise son — now nearly 3 — begins shrieking with excitement. I’d expected this, half-hoped for it, and I laugh to see the joy in his eyes. The rabbi gently jokes about being upstaged, and the child’s father whisks him away to run circles on the lawn.

* * *

Every so often, I catch glimpses of imaginary children. Sometimes in our bedroom, standing in a pile of clothes, wriggling tiny arms into jacket sleeves. Sometimes in the kitchen, perched on a stepstool, clutching a wooden spoon in one hand.

They never have faces, these children. All I can see is the backs of their heads, the color of their hair. Sometimes dark brown, like my husband’s and mine. Sometimes blond, sometimes black. I try to turn them around, to paste on facial features, my husband’s full lips, my amber-brown eyes. Is the color of their cheeks lighter than mine? Darker? About the same? I never can tell. They evaporate too quickly.

* * *

I am 30 years old. It rained all winter, and in the spring the wildflowers carpeted the hills so thickly you could see them from space. Now it’s summer, and the temperature has shot up and melted the newly fallen snowpack, dried fresh undergrowth into tinder.

Nature seems especially ferocious this year. I am hearing stories of extremes: too much rain in wet areas, and too much heat in dry ones. Along the crowded coasts, hurricanes are striking with frightening violence. Work colleagues in Houston and Florida are living out of suitcases, their homes flooded. In Puerto Rico, residents are living without power, drinking contaminated water.

And there is fire, too, closer to home. In the Pacific Northwest, whole swaths of the Cascades are ablaze. My friends in Portland and Seattle say the smoke is so thick that it eclipses the sun.

* * *

“I keep thinking about time,” says the man I married. “I already feel like I don’t have enough time to do a good job at all the things I’m currently doing. How will I be able to do all of that, and have a kid?”

He’s curled into himself on the couch, his voice thick with tears. He’s afraid to tell me this. Afraid that he’s somehow saying the wrong thing.

I don’t know how to respond. How to tell him that it’s about time for me, too. Time on my body’s clock. Time ticking down until a switch flips and I can definitively say “I want this” or “I don’t.” Historical time, the Dust Bowl, how we don’t know what it’s like to see our home turned from cozy to crucible. Geologic time, and knowing how soon the earth will reject us altogether.

I don’t know how to say these things to him. Instead, I pull him in for a hug, kiss his eyelids, make soothing noises.

* * *

“Twenty-seven years,” my father says. “Can you believe it?”

My brother grins, and my sister rolls her eyes. It’s a familiar script, one we all act out every year around this time. They lean together, two curly, brown heads, and blow. The candles flicker and extinguish in parallel trails of smoke.

My mother picks a candle out of the cake, pops the unburnt end in her mouth to lick off the chocolate frosting. “Of course,” she adds, “it was a challenge keeping you guys inside long enough.” This is it, the closest she ever comes to a complaint. She gives each twin a one-armed hug, a kiss on the head.

I wonder how sharp her early inklings must have been. She fought to become pregnant, twice, and her body fought back. And when her troublesome babies were born, she told us the stories of our births in her amazed actor-voice, full of warmth and wonder.

I have none of her certainty. I have only faceless glimpses of imaginary children, and they frighten me. But if I imagine a life without them, I feel chilled and unmoored. I think of the kindly new doctor in her gray hijab, and exhaustion washes over me. I’m tired of the needles, the questions, cataloging signs of illness in the mirror.

I think of the mega-drought, and of my mother in bed, and of Pam and her lively mother and red-headed daughter. It occurs to me that these things may never truly coalesce into “want.”

* * *

The day after the twins’ birthday, Sonoma County catches fire. 100 miles to the north of us, towns and vineyards burn to the ground. People tumble out of their cozy homes, grand estates, mobile home parks, and flee. Hundreds are overcome by the smoke, or outrun by the flames. Newspapers publish aerial shots of blasted neighborhoods: orderly rows of flattened houses, shade trees stripped of their leaves.

When the winds shift, a soupy haze blows south over our neighborhood. The street lights blur in the evenings, as if the usual morning fog got its daily route confused. The air tastes like ash and rubber.

My husband and I go out dancing on a Friday night, the night of the thickest smoke. We walk down the street with our sleeves held to our faces. The dance floor is nearly empty; he takes me in his arms and we waltz in sweeping circles.

This is a new ash-cloud, a warning. The planet groans with people, and someday it will become too hostile for more. The mega-drought is looming, and my insides are dry.

The world is burning, and I am 30 years old, and soon I will have to decide.

* * *

Zoe Fenson lives and writes in the San Francisco Bay Area. Her essays have appeared in Narratively, The New Republic, The Week, SELF, and elsewhere.

Editor: Danielle A. Jackson

 

A Trip to Tolstoy Farm

Illustration by Giselle Potter

Jordan Michael Smith | Longreads | September 2018 | 29 minutes (7,903 words)

“A quiet secluded life in the country, with the possibility of being useful to people to whom it is easy to do good, and who are not accustomed to have it done to them; then work which one hopes may be of some use; then rest, nature, books, music, love for one’s neighbor — such is my idea of happiness.”

— Leo Tolstoy, Family Happiness

* * *

Huw Williams is not a hermit. Not exactly. For one thing, he answers a telephone while I’m visiting him. The phone connects to a jack somewhere, although I don’t understand how it can function properly; it seems impossible that a cabin so rudimentary and run-down could support something as technologically advanced as a telephone.

The floors are covered with broken power tools, a machete, unmarked VHS tapes, decades-old newspapers and knocked-over litter boxes once filled by the three cats prowling around. Stenches of urine and filth are masked only by the rot on the stove, where the remains of long-ago meals are eating through the pans they were prepared in. And the cabin is so cold that when anyone speaks, breath becomes vapor.

Dried-out orange peels hang from the ceiling. “It’s a way of breaking up the straight lines,” the 76-year-old Williams tells me cryptically. “I’m averse to being inside a box, with all straight lines.” A radio plays environmental talk radio here in Edwall, a tiny community about 35 miles by car from Spokane, Washington. The radio is part of an ’80s-style dual cassette player, but the trays where the cassettes should go are broken off.

When I came upon Williams’ cabin on a wet afternoon last September, I assumed it was empty. My GPS couldn’t locate it, and neighbors were unsure if it was inhabited. Rusted-out trucks and cars surround the house, which is up on a slight hill atop a dirt road that bisects another dirt road that runs off a few other dirt roads.

But for all his isolation, Williams is not hiding. He grew up on this land, which his parents ran as a cattle and wheat farm. He moved back here in the 1970s after his first wife ran off with their friend and took the kids. He also lived here with his second wife, until she too left him for another man. Anybody could find him, if anybody cared to. Maybe that’s the hardest part.

Williams has prostate cancer, irritable bowel syndrome, melanomas, multiple sclerosis, and he thinks he might be bipolar. He speaks slowly and softly, as if he might run out of breath at any second. He looks the Unabomber part, with his long beard and ragged clothing. But then, he was idiosyncratic even when he used to get out more. He hitchhiked across the country to protest nuclear war, got arrested a time or two, and, after going through a brief celibate period, was a swinger who had sex with his wife’s boyfriend’s mother. Most spectacularly, in 1963 he founded a 240-acre farm nearby that is among the longest-lasting remnants of the ‘60s communes that Charles Manson gave a bad name to. And it was based on the teachings of Leo Tolstoy. Read more…

Weighing the Costs — and Occasional Benefits — of Ethnic Ambiguity

Photo illustration by Katie Kosma

Aram Mrjoian | Longreads | September 2018 | 16 minutes (3,949 words)

 

At the beginning of 7th grade, sitting toward the back of a column of brown laminate desks, I was first told I had an emerging unibrow. Michigan still radiated of summer. The September air hugged my skin. I was lanky and undefined, a soon-to-be teenager who’d bought into the culture of extreme sports, so I wore oversized cargo shorts and a baggy t-shirt that hung down to my knees. At the time, skaters like me were prone to wearing clothes that didn’t fit well, as if swimming around in an extra large negated the fragility of our young bodies.

Our German class, an introductory course more focused on the country’s culture than language acquisition, was mostly filled with young men. It had the reputation for being a blow-off, less intellectually strenuous than Spanish or French. Originally from Deutschland, Mr. E liked to play old clips of Michael Schumacher celebrating Formula One racing victories in glamorous locales — Monaco or Barcelona. This pastime lent itself to the underlying masculinity of the classroom.

One morning, while we were supposed to read a conversation from the textbook aloud with a partner, the boy sitting in front of me pivoted around in his desk. “You have to shave that or something,” he goaded, pointing toward my forehead. I spent the next five minutes trying to convince him he was mistaken. We ignored the scripted dialogue in front of us. He didn’t let it go. From then on the shrinking gap between my eyebrows became a daily topic of conversation. He brought other kids in our area of the classroom in on the joke. I worried that if I removed the fuzz I would only set myself up for more ridicule.

A week or so into that school year, the Twin Towers fell. I was in math class, algebra, which was taught by a skeletal man with a thick mustache and ponytail. He wore corduroy pants most days, a mug of burnt-smelling coffee glued to his right hand. He was the type to squat down next to the desk and talk to students face to face. We knew something was wrong when he turned on the television while we scribbled proofs in our workbooks. The class watched the news in stunned silence. By lunchtime, we were sent home. A few days later, my neighbor in German class gave me a new nickname: “Arama bin Laden.”

By the end of the semester, I started plucking the mess of black hairs bridging the space above my nose. I couldn’t tolerate the worms wriggling toward each other across my face, hinting that I was different. I bleached my hair. I found numerous ways to blend in, but nothing could change the five foreign syllables of my full name, the simple alteration of the first that transformed me into a terrorist.

I did have something of an out, need be. My parents, with remarkable foresight, had given me the middle name Joseph so that I could go by AJ. It was a failsafe designed precisely for such circumstances. A last resort for retroactive assimilation. However, I never used my initials. It always felt unnatural to me, having been called by my given name since I was born. Seventh grade was the first time I realized my name could be used against me. I learned that to be an unknown was to be other, that to be difficult to pronounce was to be threatening, and that to be ethnically ambiguous was to be somehow less American.

Read more…

Breast Implants, Beyond Real and Fake

Image via Getty

Nearly seven years ago, Nell Boeschenstein decided to undergo a prophylactic mastectomy after learning that a genetic mutation running in her family significantly increased her odds of getting breast and ovarian cancer. Her recent Granta essay is a (bracing) personal and medical history of the years since her surgery. It’s also a cultural history of breasts in their various ontological states — real and symbolic, natural, fake, and enhanced — and highlights the difficulty of talking about bodies (even, if not especially, one’s own) without getting entangled in layers of mediation through language, visual representation, and social norms. You start with skin, flesh, and blood and end with celebrity profiles, podcasts, and long lists of synonyms and euphemisms.

The essay devotes considerable space to unpacking the cultural ambivalence surrounding breast implants, which double as markers of both tackiness and empowerment, which makes the decision whether to get them at all especially fraught:

You also talk about not getting them at all. Years ago, whenever the vague meditation of what-would-you-do-if passed through your head en route to never-me, you liked to imagine yourself as a woman who would reject the idea of implants and instead proudly claim, like a warrior princess, some scars and a misshapen torso. Reality bites. Since never-me has become yes-you, you’ve grown hyper-aware of the clickbait that appears periodically in your Twitter feed, lauding brave breast cancer soldiers and promising a gallery of artistic photographs featuring survivors who’ve decided against implants in favor of staring out at the world and daring it to tell them they’re not beautiful.

In these photographs, sometimes their chests are unadorned. Sometimes they are decorated in elaborate tattoos of briar rose patches or rising phoenixes or blooming cherry trees. Inevitably, the writers of these articles fawn over the aesthetic qualities of this body art and the moral courage and rejection of a patriarchal culture such a choice implies. Maybe you’re reading too much into it, but it seems that, while all women who’ve had their biological goodyears taken off are placed on some sort of pedestal, those who’ve opted out of implants are — mirror, mirror — the most ballsy, the most badass, the most empowered of them all.

Are you supposed to be this kind of woman? You honestly do not know. But if you are, you aren’t. Messages have been mixed. Messages are mixed.

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‘I was pain incarnate.’

(AP Photo/The Republic, Andrew Laker)

As the opioid crisis rages unchecked in North America and addicts are dying in record numbers, the voices of law enforcement and politicians braying for action are drowning out those of terminal cancer patients whose remaining quality of life depends on fentanyl — the only drug that keeps their relentless pain at bay.

At the Walrus, Teva Harrison reflects on how fentanyl is helping her make the most of the time she has left.

In 2013, at the age of thirty-seven, I was marketing director at the Nature Conservancy of Canada. My husband and I had just bought our first home. I was training for a half-marathon. And I had pain—excruciating pain that I managed by taking Advil and Tylenol as often as the packaging allowed. It didn’t really help. The ache was deep in my bones, like the worst toothache you’ve ever had, writ large. It throbbed and spasmed and shot like needles throughout my body. The pain grew so intense that I went to emergency, but doctors just gave me more painkillers and sent me on my way. It hurt too much to sit, so I stood and leaned through meetings at work.

The pain finally made sense when I was diagnosed with metastatic breast cancer (mbc). It wasn’t stress from over-training causing me pain, as I had initially thought; it was cancer in my bones—cancer that had metastasized to remote parts of the body to form new tumours. Even though I have cancer in my bones, my liver, my lungs, and elsewhere, it’s all breast cancer. mbc is terminal. It is incurable. But it can be treated for an indeterminate amount of time.

Fentanyl patches have not only given me relief from pain for three years now; they have given me my life back. I can now usually sleep through the night. I can now sit at a table for a meal or at a desk to write. I still can’t run, but I can walk. And fentanyl doesn’t slow down my bowels to the point of near-failure. I never have to experience the agony of feeling my medication completely wear off—that raw and naked pain, all-consuming like the darkest night. Pain and its management no longer dominate my thoughts every minute of the day. And because I am acclimated to narcotics and using just enough, neither pain nor opioids cloud my mind any longer.

I was barely a person. I was pain incarnate. A drug is neither good nor bad in its own right. Fentanyl is neither evil nor benign. It just is. And for many people, people like me, it is a crucial tool that allows us to live.

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The Other Side of Fentanyl

Longreads Pick
Source: The Walrus
Published: Aug 23, 2018
Length: 9 minutes (2,414 words)

The Man Without a Nose

A prosthetic nose is on display at the booth of the Nakamura Brace at the "OTWorld" orthopedics and rehabilitation technology trade fair in Leipzig, Germany, 13 May 2014. Photo by: Peter Endig/picture-alliance/dpa/AP Images

After experiencing chronic nosebleeds and severe congestion, humor writer Steve Bean Levy goes to the doctor and discovers he’s got Sino-Nasal Squamous Cell Carcinoma — a cancer that attacks the nose and sinuses. In a poignant (and graphic) personal essay at MEL Magazine, Levy recounts his treatment and what it’s like to live life without a nose.

On March 2, 2017, Blackwell and his team performed a schnozophomy. That’s Yiddish for rhinectomy, which is English for cutting your nose off. I was in surgery for 12 hours, from 7:30 a.m. to 7:30 p.m. They removed my nose, my tumor, my upper gums, all of my upper teeth and two-thirds of my upper palate. Soon thereafter, in preparation for radiation treatments, the majority of my bottom teeth were also removed. I was left with a total of four teeth, all on the bottom.

But for the moment, I want to tell you about the hole in my face. I want to tell you about The Wound.

And I can really look IN there. There’s a vast space here. This was my sinus cavity! This is the interior of my skull! To examine The Wound for the first time, I began by removing my plastic nose. It’s more of a nose-shell, really, with a nose-shape in the center, partial plastic cheeks and a bit of upper lip. Beneath the shell, I was delighted to find that Dr. Blackwell had built a very realistic nose out of gauze! It was a little crude, but quite nose-like, really very well done. He had built it skillfully, and I imagined, quickly and expertly, the way a seasoned balloon-artist might make a balloon animal, finishing off with a flourish, saying, “There ya go, little fella, it’s a nose!”

As I disassembled the gauze-nose, I was again impressed, this time by the sheer quantity of gauze that Blackwell used; there was enough for five noses. I became a vaudeville magician, “The Wizard of Gauze,” performing my take on the Endless Handkerchief Trick. The more gauze I unraveled, the more there was to unravel.

Today, I’m like Eleanor Rigby — I wear a face that I keep in a jar by the door. Actually, I keep mine in a pile in a drawer, but McCartney has written the superior lyric. We’ve all heard a woman say, most likely in an old-timey TCM movie, “I have to go back inside to put my face on.” I can’t count the number of times I’ve walked out the front door without my nose and had to turn back and go inside to “put my face on.” Nor can I count the number of times we’ve been about to head out, and I’ve had to say to Caroline, “Honey, have you seen my nose anywhere?”

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My Year Without a Nose

Longreads Pick

Steve Bean Levy recounts this past year as a man without a nose, after undergoing treatment for Sino-Nasal Squamous Cell Carcinoma — a rare form cancer that attacks the nose and sinuses.

Source: MEL Magazine
Published: Aug 13, 2018
Length: 14 minutes (3,721 words)