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On Being an Ill Woman: A Reading List of Doctors’ Dismissal and Disbelief

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Just months after I turned 18, I sat on the white crinkly paper of a patient bed, waiting for my first neurology appointment. I repeated, I am a Division I athlete, as if reminding myself of my athleticism would somehow erase the strange symptoms of fainting, blurred vision, and dizziness that had plagued me for the previous few weeks. The illness, like a flower from concrete, seemed inconceivable. I had been healthy my whole life.

The doctor rapped on the door, entered, and shook my hand before taking a seat. “The doc at your school called. Thinks you had a bad reaction to medication,” he said, referencing antibiotics I’d been prescribed for bronchitis. “He says you’ve had blurry vision, vertigo, two episodes of syncope.”

“Is syncope fainting?” I asked, feeling as though the language of my body had been translated into something incomprehensible. I wanted to snatch it back.

“Yeah, yeah,” he crooned. “You been running?”

“I’ve been trying,” I told him. Each attempt ended in a swell of vertigo and subsequent collapse. The assistant coach carried me to my trainer, who took my blood pressure and pulse, always murmuring, “you’re fine.” The athletic doctor assigned to our team, after performing several tests, had told me that I presented no abnormalities; he encouraged me to run.

The neurologist pulled out a mallet and tapped my knee. My lower leg reacted as it should, swinging forward like a pendulum. He told me to walk, and watched as I made my way from the bed to the door, and back again. “It’s fine for you to run,” he said, scribbling down notes. “I don’t see what’s holding you back.”

I left the appointment with a sense of unease. If the athletic doctor, a trainer, and a neurologist had seen me and told me I was fine, then was I really sick? At the time, I didn’t know how to advocate for myself while in the position of patient. I felt alone with my illness, scared of my own body.

Eight years have passed since then and, in my own continuing journey toward a diagnosis, I have felt a strange mix of emotions when reading narratives of other women being discredited by medical professionals. I feel outraged when I read about their attempts to voice symptoms, only to be silenced. Guilt — and a desire to work toward reforming our current medical system — washes over me when I am reminded of the extent of my own privilege.

The essays below are both a salve to the years of dismissal from doctors and a call to action. I’m inspired by other women’s efforts to advocate for themselves, practice radical empathy, change policy, and create resources so that other patients don’t endure the same harrowing experiences. When I hear my voice in chorus alongside them, I feel as though I’m somehow part of a community, or at least not alone anymore.

1. “PCOS. POC. Poetry. & Pilates” (Tiana Clark, Lenny Letter, April 13, 2018)

Tiana Clark tries to ignore symptoms of panic attacks, hair loss, brain fog, and more, until her ovary throbs with an excruciating pain that forces her to the walk-in clinic. There, a doctor waves Clark’s symptoms away with painkillers and, at an appointment with a white female gynecologist soon after, Clark’s self-diagnosis of polycystic ovarian syndrome (PCOS) is initially belittled.

Her casual dismissal of my problem reminded me of what I’d so often seen living as a black woman in America: an erasure of my distress.

In this incisive, empowering essay, Clark highlights researched material about black women’s health care in the U.S., relays her own harrowing experiences with medical professionals, and emphasizes the importance of learning to advocate for herself.

2. “Memoirs of Disease and Disbelief” (Lidija Haas, The New Yorker, June 4 & 11, 2018)

By examining female narratives of illness ranging from Virginia Woolf’s essay On Being Ill, Jennifer Brea’s documentary film Unrest, Susan Sontag’s canonical Illness as Metaphor, and Christina Crosby’s book A Body, Undone: Living On After Great Pain, among others, Lidija Haas reviews Porochista Khakpour’s Sick with an eye toward how storytelling can affect treatment, act as a form of escape, and undermine dangerous expectations of what a patient should be.

(Related: read an excerpt of Porochista Khakpour’s Sick here at Longreads.)

3. “Doctors Told Her She Was Just Fat. She Actually Had Cancer” (Maya Dusenbery, Cosmopolitan, April 17, 2018)

After experiencing coughing fits for three years, Rebecca Hiles visits the doctor, only to be told her condition is “weight-related.” Hiles is not the only one to be dismissed in this way; in this insightful and eye-opening essay, Dusenbery collects stories of women who have been fat-shamed by doctors rather than being treated with care, resulting too often in dangerous downward spirals in illness.

4. “The Reality of Women’s Pain” (Rachel Vorona Cote, The New Republic, March 7, 2018)

Rachel Vorona Cote situates Abby Norman’s Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain, a book about Norman’s arduous experiences receiving treatment for endometriosis within a long history of “wild theories about female anatomy” such as the “wandering womb” theory of Ancient Greece, Freud’s dismissal of patients as hysterical, and others.

As Norman communicates so powerfully, a woman’s relationship to her pain is a snarled coil of memory and socialization.

(Related: read Abby Norman’s Women’s Troubles, from Harper’s.)

5. “On Telling Ugly Stories: Writing with a Chronic Illness” (Nafissa Thompson-Spires, The Paris Review April 9, 2018)

Nafissa Thompson-Spires not only chronicles the emergency room visit and appointments that led to her initial diagnosis of endometriosis, but also writes about what it means to be a woman with an invisible chronic illness, and her identity as a black woman within the realm of the medical world.

In Ain’t I a Woman: Black Women and Feminism and Talking Back: Thinking Feminist, Thinking Black, bell hooks problematizes the persistent myth of the strong black woman. This myth contributes to real-life consequences in medicine and elsewhere.

6. “Checkbox Colonization: The Erasure of Indigenous People in Chronic Illness” (Jen Deerinwater, Bitch Magazine, June 8, 2018)

When Jen Deerinwater visits the doctor, her identity as “a citizen of the Cherokee Nation of Oklahoma” is erased by problematic intake forms that only include the options of “American Indian” or “Native American,” and she is often asked “degrading and humiliating questions” by medical professionals. Deerinwater lists a litany of ways in which Native people are ignored and mistreated by the healthcare system, resulting in lack of access to resources and treatments, shortened lifespans, and a host of other harms.

(Related: read other essays from the 15-part “In Sickness” series from Bitch Magazine.)

7. “Health Care System Fails Many Transgender Americans” (Neda Ulaby, NPR, November 21, 2017)

As of November 2017, 31 percent of transgender Americans lacked regular access to healthcare, due in part to how difficult it is for transgender people to find jobs. Neda Ulaby notes that “insurance companies and many medical professionals still treat them as though their bodies don’t make any sense,” which causes anxiety for trans people when visiting physicians, something Planned Parenthood is trying to ameliorate through staff training.

(Related: read Making Primary Care Trans-Friendly by Keren Landman, from The Atlantic.)

8. “A Matter of Life & Death: Why Are Black Women in the U.S. More Likely to Die During or After Childbirth?” (Meaghan Winter, Essence, September 26, 2017)

When Fathiyyah “Tia” Doster was pregnant, she began to feel bloated late one night. Luckily, she visited the hospital, where she safely delivered her baby. A diagnosis of hemolysis, elevated liver enzymes, low platelet count (HELLP) syndrome left her hospitalized for more than three months, but alive. Other pregnant women are not so lucky. Meaghan Winter explores the historic backdrop of healthcare for black women, the current political climate which is threatening women’s access to insurance and clinics, and bias within hospitals, all of which have contributed to rising rates of maternal mortality.

The complex web of causes — which includes genetic predispositions, chronic stress, racial bias and structural barriers to health care — contributes to the racial disparity in maternal health.

In the end, Winter offers strategies for health providers, reformers, and patients and their families to implement necessary change.

Jacqueline Alnes is working on a memoir of running and illness.

A Song for the River

VWPics via AP Images

Philip ConnorsA Song for the River | Cinco Puntos Press | September 2018 | 28 minutes (5,578 words)

By sheer dumb luck I happened to be facing the lightning when it struck: a livid filament that reappeared on my eyelids when I blinked. A blue puff of smoke bloomed skyward from the top of the ridge, superheated sap boiled to vapor in an instant. It dispersed on the breeze so quickly I wondered whether I had imagined it — whether, having become at last clinically pyromaniacal, I had willed the tree to catch fire and conjured the evidence to prove it.

I reached for the field glasses where they hung from a hook in the ceiling of the tower, an instinctual move made without looking away from the spot of the strike. I lifted the binoculars to my eyes, focused on the ridgeline. Waited. Remembered to breathe. Waited some more. Nothing amiss. Nothing new or different along the contour of the hill. Read more…

The Dead End on My Record Shelf

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Christopher C. King | An excerpt from Lament from Epirus: An Odyssey into Europe’s Oldest Surviving Folk Music | W.W. Norton & Company | May 2018 | 16 minutes (4,346 words)

A time-traveler, a person from the twenty-first century, stands on a cliff overlooking a mountain pass in southern Europe, in northwestern Greece, a few thousand years after the end of the last Ice Age, having traveled back in time by way of some technology unknown to us. This traveler is observing human beings while they interact with one another in this challenging, remote environment.

Something is happening among these proto-Europeans. One person places a long wooden shaft, holes bored along the side, to his lips, producing sound. Other sounds exit the mouths of the surrounding people. The collective sound appears fragmented to the listener — the time-traveler — standing above. At times the voices and the flute notes appear smooth, mellifluous, but then disjointed and abrupt. During this flood of sound, members of this group move in cryptic yet intentional ways. When this lush cacophony ceases, so too do the movements of the people.

What is going on down there?

Any of us could be this time-traveler. And any of us would realize — based on our observations — that these people are communicating. We perceive sound and movement, assuming cause and effect. The question that should linger in our minds is this: are we observing a use of language, a use of music, or something else — an alien and impenetrable behavior? Read more…

Putting a New Stone on the Grave: Sjón Brings the Golem to Iceland

Door to attic of the Old New Synagogue where according to myth the golem rests. Slowcentury / Getty

Adam Morgan | Longreads | September 2018 | 10 minutes (2,560 words)

In the summer of 1990, an Icelandic writer named Sigurjón Birgir Sigurðsson traveled to Czechoslovakia with his friend, the singer-songwriter Björk. Their alternative rock band, The Sugarcubes, was performing in Prague because of the city’s folk status as the birthplace of the sugar cube. But while they were in town, Sigurðsson made a pilgrimage to the Old Jewish Cemetery, where the legendary creator of the Golem of Prague had been buried more than four centuries earlier. After placing a stone on his grave, Sigurðsson asked the rabbi for help solving a personal problem, and in exchange, promised to bring the golem into Icelandic literature.

Today, Sigurðsson goes by the name Sjón. In 2013, when his surreal novels were first translated into English by Victoria Cribb, critics compared him to Borges, Calvino, and Kafka. Most of his books are less than 200 pages, but this week sees the publication of CoDex 1962, a labyrinthine epic that invites comparison to Roberto Bolaño’s 2666. Originally published as three separate novels in Iceland in 1994, 2001, and 2016, CoDex 1962 is Sjón’s fulfillment of the pact he made in the Old Jewish Cemetery almost three decades ago. Read more…

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

 

This Month in Books: ‘Everything That We Are and Ever Have Been’

Dear Reader,

This month’s books newsletter has a lot to say about identities — mistaken, misunderstood, transformed, false, fictional or as anonymous as the op-ed.

In his interview with Cooper Lee Bombardier, Thomas Page McBee says that when he transitioned, he “just felt so limited, so suddenly afraid of becoming the kind of man I’d grown up in fear of.” Becoming someone you don’t want to be, he realizes, happens when you have not come to terms with who you already have been, or who you’ve failed to be:

I’m of the belief that we all have to face our own rejected parts — what Jung calls our shadows — in order to genuinely make a cultural shift.

When identities shift, cultures will follow; there is political power generated by self-actualization. As Alana Mohamed writes in her review of Michelle Tea’s essay collection Against Memoir, “It’s a forceful thing, to show up in a world that doesn’t expect you to exist, and to say something it doesn’t expect you to say.” But Mohamed also warns of the erasure of triumph, the cleaning-up inherent in actualization:

[Radical queer women who fought for queer visibility in the ’80s and ’90s] were dying not of marriage inequality, but of addiction, trauma, and poverty. If we forget them and their stories, queer history becomes nothing more than a slogan.

She argues for a cacophony of viewpoints and conflicting definitions: a queerness that “seeks to make room for us to name ourselves,” that is “ever-expanding and ever-in-conflict with itself because of this.” Mohamed imagines a hopeful future for queer identity, for all identity, pointing to the powerful potential of memory and community, even as she probes a deep rift that has breached queer culture — the Rashomon-esque inability of people to remember the same stories or to honor the same heroes: “Who threw the first punch, or glass, or heel at Stonewall? Everyone has their version of what happened that night on June 29, 1969.” A huge feud has developed over the identity of who led the charge.

Preoccupied with this same interplay of history, memory and identity, Christian Kracht’s novel The Dead erases beloved heroes of the Golden Age of film and replaces them with ghoulish impostors, rank fascists and bloviating imperialists: Charlie Chaplin is no longer the crusading satirist who created The Great Dictator, but rather he is the dictator. In his review, J.W. McCormack says this restructuring of famous personalities is an incursion of history into identity, the reality of the 1930s reshaping its legacy, its art:

As cultural monuments in any of the arts prosper, the actual culture that produced them so often plummets — into tyranny, a defiant ignorance, and death.

It’s a startling assertion that who we are and the world we will leave behind are two not-particularly-connected things. Identity can look suddenly like nothing more than another peril in a life full of them, a treacherous path in a dangerous world. “A big part of toxic masculinity is to not question anything about being a man,” McBee says. “It felt to me very dangerous to do so, even in writing this book.” Tea reflects on how her warts-and-all approach to documenting her queer contemporaries was just another way of hurting them: “It’s one thing to discuss your family’s trauma with other family; it’s another thing entirely to release their stories to a world that doesn’t love them.” In Nick Drnaso’s Sabrina, when a man misstates a murdered woman’s identity, it provokes a mob of online harassers to cast doubt on his:

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And, as Levi Vonk writes in his review of Mario Chard’s poetry collection Land of Fire, identity is a tool of state power, predicated on arbitrary qualities, such as through which entrance you entered a space. And “as soon it is determined that the bird has not entered through the door — the only legitimate entrance — everything unravels”:

How did the bird get inside the house?
Through the door I said.
No. Through a window. Listen they said How did the
bird get inside the house?

The questioning continues until it has abstracted all qualities of the bird:

The bird is nameless. Who named the bird?
I said No one. The bird is nameless.
What is your name? They said.
I am nameless I said.

In her interview with Bridey Heing, Olivia Laing says she wrote her sort-of-autofictional novel Crudo to interrogate such rigid categorizations, to ask “How does one learn to be less selfish? How does one learn to soften one’s borders?” She says:

It’s a personal question, but it’s also a political question. That’s the same force that leads people to say “I don’t want immigrants in my country.”


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On the other hand, in her interview with Ryan Chapman, novelist Ling Ma asks, more or less, what has identity got to do with anything? Her protagonist, she says, became exasperated with her when she wrote an immigration narrative for the character’s family. The character refused to even tell the story, thinking it pointless:

That was really difficult to write because I feel like any time a character is a minority, their narrative is automatically an immigration narrative. Growing up I used to get asked the question where do you come from? I grew up in Utah, Nebraska, and Kansas, so you would hear that a lot.

I was just like, Can we just not have a character who needs to explain how she got to the U.S.? I think my difficulty with that came through. With chapter sixteen, there’s no first person. I couldn’t get Candace to talk about it. When I was writing it she was going, This is really cheesy, I’m not a part of this. So I had an omniscient narrator and then let her take over that chapter gradually.

Catherine Lacey, in an interview with Tobias Carroll, doesn’t get into debates with her characters about identity. Instead, she inhabits their identities so thoroughly that she marvels at how she has ended up writing something she would never say herself:

I don’t know. I don’t even remember quite where I was when I wrote that [story] to be honest. I think that one just came like from that character. I’m not sure if I would ever say that. In my life, I’m pretty sure I wouldn’t use that description, at least in an honest way. But that character, he just said that….

I feel like when I’m writing in a place that’s really authentic and honest, it does feel a little bit like acting in a way. And then, I’m creating some sort of character, and then I’m just performing that character, and typing what they say.

This slipperiness of self isn’t just for fiction writers; you really never can know quite who you are going to become — you might die before it happens. As Susan Hand Shetterly writes in Seaweed Chronicles: A World at Water’s Edge, the British algae scientist Kathleen Drew-Baker never set foot in Japan, and yet, years after her death, her discoveries “revolutionized the harvest and consumption of seaweed in that country.” Now she is revered in Japan as the Mother of the Sea. You can visit her shrine. In death we become godlike, our small achievements in life having profound, ripple-like effects on the future; we take our exalted place in the grand human story.

(Kracht, of course, takes a different position: “The dead are profoundly lonesome creatures, there is no solidarity among them, they are all born alone, die, and are reborn alone as well.”)

So how to proceed? Be careful, Lacey warns. Remember your identity is porous:

I feel like I’m always making language out of the language that’s around me… I’m very careful. I don’t really watch a lot of series. I pretty much only watch a TV series if I’m on a plane, and I’m like really careful about what I read and when I read it. And I’m careful about who I talk to and who I spend my time around. I think it’s true for everybody, but I can’t really say it for everybody, but for me, it’s definitely true that I’m always writing a story out of the language that I surround myself with.

And as McBee points out, there is one upside to identity — most of who you are is in the past:

I’ve come to realize that everyone passes. Most of us aren’t walking around with our souls out all the time, being everything that we are and ever have been.

Dana Snitzky
Books Editor
@danasnitzky

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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…

Arranging Your Body in Space: Talking Identity, Memoir, and Twins with Leah Dieterich

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“One-eighth of all natural pregnancies begin as twins,” Leah Dieterich writes in her memoir, “but early in pregnancy, one twin becomes less viable and is compressed against the wall of the uterus or absorbed by the other twin.”

This concept of a vanishing twin, a term coined in the year of Dieterich’s birth, frames the author’s fascinating exploration of love, identity, sexuality and relationships. Though she finds her complement in her husband Eric, the twinship that is their marriage starts to diminish, or ‘vanish,’ just as her body had as a ballet dancer in her youth. Dieterich tries to figure out what drives her to fuse so strongly with certain people, what it is about her that fears being alone, and how individuality vanishes in a union. Maybe she lost her twin? Like the great essayists, her probing mind struggles to understand itself, and she makes fascinating connections between a range of subjects from pop culture to psychology to literature to help figure out who she is and what she wants.

Vanishing Twins is a powerful, poetic memoir, both emotive and cerebral, that casts new light on the familiar issue of relationships, marriage and storytelling, and vividly articulates some of the most subtle aspects of human relationships in a way many readers will recognize in themselves.

When did you start writing about your relationship with your husband and your own identity?

I started writing Vanishing Twins about six years ago, but before that I’d explored some of the same themes of love, language, and identity in fiction. I’d also started a screenplay for a film about a couple trying to define their individual identities while maintaining their bond, who meet a set of identical twins who are trying to do the same. Sexual entanglements ensue. I was really only at the research phase for this film, interviewing a set of twins that my husband was friends with, and I got so into our correspondence and the other research I was doing about twins (and relationships and sexuality) that I realized I needed to pursue this topic in a more essayistic way.

When I tell people about your book, I emphasize not only the subject matter but the way you approached your story. To me, you turn the memoir on its head by staging the text in a poetic way on the page, and by alternating essayistic diversions with the larger narrative to explore related themes. How did you find your book’s inventive form?

I have writers like Maggie Nelson and Sarah Manguso and many others to thank for the form. I really love the numbered aphorisms in Bluets but knew that felt too academic for my project, though I have always loved the way Nelson can synthesize the ideas of great thinkers into her own personal narrative. I assume it means she’s a great teacher, though I’ve never studied with her. I was a private student of Sarah Manguso’s and learned a lot from her about concision and how it is possible to make something very weighty out of only a few words or paragraphs. I like the term “staging” that you use, as well, because I feel that my writing has been informed by my background as a ballet dancer. In dance, you are constantly arranging and rearranging your body in space. This is how I treated the various sections of the book. I moved them around until they seemed fluid like a dance.

You work in advertising, but did you ever formally study writing?

I haven’t formally studied writing in a degree program. I cobbled my writerly education together from a couple of UCLA extension classes, a week-long workshop in Mexico, and two long-term private student relationships, one with Chris Daley who leads Writing Workshops of Los Angeles with whom I met with weekly for two years while generating the first draft of Vanishing Twins, and the other with Sarah Manguso, who gave me notes on two drafts of the book over the course of the following two years.

How has your ad career informed your literary ventures?

Advertising writing requires a lot of concision, so it has very much informed my inclination toward brevity in my literary work. Being a copywriter and having my headlines or TV scripts rejected (and sometimes accepted, even lauded) by my boss on a daily basis prepared me well for the rejection I’d have to face on the way to publishing a book.

People often describe writing about our lives as “cathartic,” but that isn’t the point of a lot of personal writing. In your book, you’re searching for answers, for a deeper understanding. Do you feel that you’ve achieved a new perspective on your life now?

I definitely gained perspective on the period of my life that I’ve explored in Vanishing Twins. I always write to understand something, whether it’s something about myself or something about the world at large. It’s the way I process my thoughts. When I’m writing or revising with the intent to publish, I’m always doing so with David Foster Wallace’s intention—that the purpose of literature is to connect, challenge, and ultimately make us feel less alone. So while it’s true that writing about one’s life isn’t necessarily “cathartic,” there is a visceral element (connection with other humans) for both reader and writer when it is done successfully.

Sometimes the people who become characters in our stories feel betrayed or mischaracterized, or feel they get should an editorial say in the text. Has writing about the people in your life caused any tensions?

Of course. But these tensions were an important part of the project itself. I had to find a way to honor my autonomy and my individual voice as an artist, while simultaneously respecting the differing opinions, memories, and thoughts of someone I love deeply. In a lot of ways it’s a continuation of the journey begun by the self who narrates the book. Luckily my husband is an artist himself, and a lover of literature and philosophy, which made the process easier. Many of the events in this book happened more than a decade ago. To have the opportunity, though painful, to revisit them has helped us realize how far we have both come together and individually since that time.

An Immoderate Novel for an Immoderate Season: An Interview with Olivia Laing

The great North American total eclipse of 2017. John Finney / Getty

Bridey Heing | Longreads | September 2018 | 10 minutes (2,761 words)

 

As a non-fiction writer, Olivia Laing has made a name for herself by writing deeply empathic explorations of creativity and the human condition. Her 2011 debut, To The River, situates the River Ouse, in North Yorkshire, within history and culture, from its role in 13th century battles to the death of Virginia Woolf. Her follow-up, 2013’s The Trip to Echo Spring, focused on American writers and alcoholism. Her 2015 book, The Lonely City, interrogated loneliness as a state of being and as a catalyst for art. But with her fiction debut, Laing has pulled back from the closely researched subjects that have been her wheelhouse; instead, she broadly documents a seven-week span of time. And yet her  penchant for research still peaks through — the narrative is written from the perspective of a fictionalized Kathy Acker-esque avatar, whose books Laing kept piled around her for inspiration while she wrote.

Crudo opens with the resignation of Steve Bannon, which Kathy, a soon-to-be newlywed, follows on social media from a Tuscan resort. Her attention ricochets between the rapidly unfolding news cycle playing out online and her private world of friends, her upcoming wedding, and, eventually, adjusting to life with her new husband. As she writes and prepares for her first trip overseas without her husband, Kathy charts the frenetic energy of the summer of 2017, unsure of whether the end of the world is truly approaching.

That sense of confusion was what Laing sought to capture. She wrote the book in real-time, with carefully outlined rules that were designed to ensure she didn’t deviate from the emotional responses to a specific whirlwind moment. Kathy, who is based in part on Kathy Acker, is also based on Laing, who turned forty and got married within the time frame of the novel. Crudo was conceived of as a means of understanding the impossible speed at which the news seemed to move, while also preserving the feeling of instability and uncertainty she saw in herself and those around her. 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…