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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.

The Top 5 Longreads of the Week

(Photo by Tim Clayton/Corbis via Getty Images)

This week, we’re sharing stories from Brittany Packnett, Rahima Nasa, Jordan Smith, Scott Korb, and Chris Heath.

Sign up to receive this list free every Friday in your inbox. 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…

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…

Florida, White Privilege, and Racism

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At Oxford American, Scott Korb reflects on his white privilege, the state of Florida, and its racist history — a state in which his life was irrevocably changed at age 5, when his father was killed by a drunk driver in May, 1982. In 2008, Korb visits Dwight Maxwell, a black man who was behind the wheel of the car that killed his dad and confronts not only his father’s killer but also his deeply held racist beliefs: “Throughout my life I’ve held shameful attitudes about black people, attitudes that embarrass me now.”

As an adult, I’ve traveled to Florida again and again to learn what I can about the end of my father’s life, which was largely a mystery to me as a child. My aunt, who was in the backseat of the car, once took me out to where he died. The road there has been widened, made safer. She says his last words were, “Hold on, we are about to be hit!” At impact, he was not wearing shoes. The man who killed him spent eighteen months in prison, and in January 2008, I shook the gate of a fence around his yard in the rural outskirts of Dunnellon, Florida, thinking that we could each benefit from talking about our shared history.

For a long time, I knew only two details about this man, Dwight Maxwell. He was drunk when he smashed his dark Ford into the car with my father in it. I also knew he was black. (Until 2005, I didn’t know his name.) These details, which I learned from the adults around me, haunted me as a young person. I didn’t drink and was fearful of alcohol until after I graduated from college. Throughout my life I’ve held shameful attitudes about black people, attitudes that embarrass me now. About Maxwell specifically, his blackness—and my whiteness, I see—made it easy to concoct stories about him. Originating in nightmares that deepened a child’s fear of the dark, as early as six or seven my father’s killer appeared to me as a lecherous monster, lewd living and aggression being characteristic of a man properly locked away for murder. The nightmares invaded my waking hours, and even as I became a teenager I would privately picture him in the leisure suit of a Blaxploitation pimp. Not knowing his actual name, I’d supplied one of my own imagining: Chester Washington. Chester, after the comic character “Chester the Molester” from Hustler magazine, which perhaps we knew as kids from the porno stash of a neighborhood father.

As an adult I’ve slowly come to understand what I did in my childhood to racialize and demonize this man. My trip to meet him in 2008 was meant to put all that behind me. Over several years, I’d circled him like a private dick, reading newspaper accounts and court records, flying to meet his family in Florida, building up the nerve to visit the man himself. I was proud of myself for trying to reach him. A girlfriend called me brave, and I believed her. The hope was reconciliation, a vestige of my grandmother’s Catholicism; I’d sloughed off those old ideas and was seeking forgiveness for them; I’d let him know I’d turned out okay, that we as a family had survived and moved on. On a cold afternoon under a tree in his backyard, I said what I’d come to say, then he apologized and before long disappeared inside. I went away. Years passed. In 2013, after Dwight Maxwell was arrested for felony possession of crack cocaine and hydrocodone pills, plus two misdemeanors, I drove with my mother to the Marion County courthouse, in Ocala, to attend his court hearings and try to speak with him again, to see what more I could learn about the day my father was killed. My last day in Florida, I returned to Maxwell’s house, but, encountering him at the side of the highway, where he’d been pedaling a bicycle, he ducked into the woods, saying he’d told me all he ever wants to. Not understanding— unwilling to, it seems—I chased him into the woods that day, wanting to talk more, though I’ve left him alone since.

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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.

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The Ugly History of Beautiful Things: Perfume

Illustration by Jacob Stead

Katy Kelleher | Longreads | September 2018 | 15 minutes (3,859 words)

If given the choice to smell like whale excrement or delicate white flowers, few people would chose the first option. Bile, feces, vomit, and animal oils sound as though they would smell repulsive. The words conjure up scent memories of that time your dog released his anal glands on the duvet, or that summer you worked by the wharf and the August air was thick with the miasma of oily herring heads. Jasmine, on the other hand, sounds like a love song, a Disneyfied dream. Try, right now, to imagine the smell of blooming jasmine. Your memory, ill-equipped to locate scents in its baroque filing system, might pull up something syrupy sweet or softly floral. Is that how you want your body to smell?

Too bad: if you choose door number two, you’ll walk away reeking of sharp vegetal tones tempered by a slightly earthy, foul scent. Jasmine absolute is an oily, semi-viscid, dark amber fluid that is denser and more concentrated than jasmine essential oil. Essential oils come from distilled, boiled, or pressed plant matter, while absolutes are traditionally made through a processed called enfleurage, which involves submerging the delicate blossoms or spices in fat before extracting their fragrance molecules into a tincture of ethyl alcohol. While it’s a common ingredient in a natural perfumer’s tool kit, jasmine absolute smells strange: complicated, beautiful, not entirely pleasurable. It reeks of indole (rhymes with “enroll”), an organic chemical compound also found in coal tar, human feces, and decomposing bodies.

If you choose door number one, you’ll be blessed with the kiss of ambergris, a highly desirable natural substance that smells sweet yet rather marine, like vanilla and unrefined sugar mixed with seawater. The scent reminds me a little of the smell of my dog’s paws — pink and light and animal. It smells like cashmere feels. Smelling ambergris is an innate pleasure, one that even an infant would recognize as enjoyable, like the first sip of sweet milk.

For more than a thousand years, humans have been adorning our bodies with animal products like ambergris and putrid-smelling plant derivatives like jasmine absolute. We apply off-putting materials to our bodies to enhance and mask our natural scents. Like dogs that roll in deer carcasses, humans seek to change our olfactory emissions by borrowing from other creatures. It’s not always about simply smelling good: We want to smell complex, so that others will be compelled to keep coming back, like bees to a flower, to sniff us again and again, to revel in our scents, and draw ever closer to our warm, damp parts.

According to natural perfumer Charna Ethier, ambergris can smell like “golden light” or a “flannel shirt that has been dried on a clothes line on a warm summer day.” Although there are several types of ambergris (including gray, gold, and white), Ethier is referring to her own personal sample, which she characterizes as “soft, fresh, and ozonic.” Ethier is the owner of Providence Perfume Company in Rhode Island, and inside her well-stocked cabinet of olfactory curiosities, she keeps a single bottle of the precious stuff. Next to her 100-year-old cade oil (a foul-smelling liquid made from juniper trees, purchased at an estate sale) and below her collection of floral absolutes and herbal essences, she has stashed a bit of ambergris tincture. The clear glass vial contains a mixture of ambergris and alcohol that includes just 5 percent whale matter. In its pure form, this substance is a waxy gray ball of animal secretion, a floating fat-berg that is “more expensive than gold.” Unlike jasmine absolute, which plays a role in many of her perfumes, real ambergris is simply too expensive to use in a commercial product. “It’s considered the miracle ingredient for perfumes,” she says. “It makes everything better.”

It’s not always simply about smelling good: We want to smell complex, so that others will be compelled to keep coming back, like bees to a flower, to sniff us again and again, to revel in our scents, and draw ever closer to our warm, damp parts.

Ethier doesn’t use any synthetics in her perfume, nor does she use animal products, though animal scents are a traditional ingredient in perfumery. Not only are these compounds expensive, but true mammalian products like musk, civet, and ambergris often come at a cruel cost. Whales have been murdered for their oily blubber and concealed stomach bile, civets are caged and prodded for their fear-induced anal gland secretions, and musk is harvested from the glands of slaughtered deer. Many people know that perfumers build their trade on the graves of millions of tiny white flowers, but fewer people realize they also bottle and sell the byproducts of animal pain and suffering. Perfumers who use synthetic materials are exempt, in a sense, as are those who use found or vintage materials. Ethier’s ambergris is “quite old” and reportedly  beach-found (“I hope it is,” she says). But even perfumes that use synthetic compounds or salvaged bile carry the whiff of death; the history of the industry is seeped in it, and that smell doesn’t wash out easily.

There’s a reason perfumers use these notes. They enhance the floral scents, undercutting lightness with a reminder of darkness. Animal products are the antiheroes in this drama — even when you hate them, you still, just a little, love them. That’s how siren songs work, and ambergris sings the loudest. Once, Ethier made a perfume using her most prized ingredients. She mixed 100-year-old sandalwood essence with ambergris tincture and frangipane and boronia absolutes, two flowers native to Central America and Tasmania, respectively. It was the first time she’d used ambergris, and this one-off perfume was so lovely that “it was like gold-washing something.” She remembers wistfully, “It was so beautiful.”

* * *

Smell is the most underrated and mysterious sense. In her 1908 autobiography, The World I Live In, Helen Keller called scent the “fallen angel.” “For some inexplicable reason, smell does not hold the high position it deserves amongst its sisters,” she wrote. Keller mapped her world by smell — she could smell a coming storm hours before it arrived and knew when lumber had been harvested from her favorite copse of trees by the sharp scent of pine. In contrast to touch, which she called “permanent and definite,” Keller experienced odors as “fugitive” sensations. Touch guided her; scent fed her. Without smell, Keller imagined her world would be lacking “light, color, and the Protean spark. The sensuous reality which interthreads and supports all the gropings of my imagination would be shattered.”

We don’t often think in terms of color and light when it comes to smell, perhaps because we have so few words for scent that we borrow from the lexicons of our other senses. Despite the fact that smell is our most ancient sense — our so-called “lizard brain” is also sometimes termed the rhinencephalon, literally the “nose brain” — it is also one that seems to elude language. “Smell is the mute sense, the one without words,” wrote Diane Ackerman in A Natural History of the Senses. “Lacking a vocabulary, we are left tongue-tied, groping for words in a sea of inarticulate pleasures and exaltation.” We’ve had eons to come up with words for the precise smell of fresh-turned earth or the exact scent of a blazing beach fire, and still the best we can do is earthy and smoky.

Perfumers have their own language, but their words have only recently begun to trickle down into popular culture through beauty magazines and blogs. Not only do perfumers and their superfans speak of absolutes, oils, and tinctures, but they can also rattle off compounds like coumarin and eugenol. A trained master perfumer (or “nose”) can pick out precise scents within a layered perfume. They don’t just call something foul — they can pick out the pungency of musk or the reek of tobacco, ingredients that are delicious in small doses but overwhelming when used out of balance.

In my quest to understand the appeal of seemingly repugnant ingredients, I spoke with doctors who study the nose, perfumers who feed the organ, and even a zookeeper who spends her days breathing in the pure, undiluted scent of civet discharge. While they had various theories as to why darkness seems to be an essential element of beauty, they all agreed on one thing: It’s all about context. In the right context, even the smell of death can be appealing. In the right context, vomit can be more desirable than gold. In the right context, with the right music playing in the background, you begin to root for the glamorous hit woman or the sardonic drug dealer.

They also agreed that sex is part of this equation, and it’s the easiest explanation to trot out. But perfumery is also about more than just smelling nice and attracting a mate. It’s about aesthetics, taste, and desire in a more general sense. We want to smell intoxicating, and truly intoxicating things are often a little bit nasty — they have an edge that cuts deeper than simple sensory pleasure. And despite how it may seem, encounters with the beautiful are rarely entirely enjoyable. If that were the case, Thomas Kinkade’s light-dappled cottages would be considered the height of fine art, and we would all walk around misted lightly with synthetic jasmine and fake orange blossom. Instead, we adore the luscious gore of Caravaggio’s canvases and dab our pulse points with concoctions containing the miasma of swamp rot, the cloying smell of feces, and the pungent, tonsil-kicking fetor of death. Beauty is sharp, it is intense, and it comes at a cost. Just as desire and repulsion walk through the same corridors of our minds, so too do beauty and destruction move hand in hand. Whenever you find something unbearably beautiful, look closer and you’ll see the familiar shadow of decay.

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One of the first known perfumers in history was a woman named Tapputi-Belatekallim. According to clay cuneiform tablets dating back to 1200 BCE, Tapputi lived in ancient Babylon and likely worked for a king. The second part of her name, “Belatekallim,” indicates that she was head of her own household, in addition to holding a valued position at court. Thousands of years before the advent of the “SheEO,” Tapputi was leaning in and bossing around underlings. She was a master of her craft, and recognized as such by her peers. Much of what we know about her comes from secondary sources, but the process of distilling and refining ingredients to produce a fragrant balm — oil, flowers, water, and calamus, a reed-like plant similar to lemongrass — is described on surviving clay tablets. It’s miraculous how modern her scents seem — or rather, it’s surprising how little has changed. Tapputi used scent-extracting techniques like distillation, cold enfleurage, and tincture that natural perfumers still use today. She also mixed grain alcohol with her scents, creating perfumes that were brighter, lighter, and had more staying power than anything else available at the time. These scents may have played a religious role in ancient culture, but they may have simply been another way to prettify the body and please the senses.

Beauty is sharp, it is intense, and it comes at a cost.

Unfortunately, Tapputi’s story is a fragmented one — she’s possibly the first female chemist, and yet she’s been lost to history. There is much more evidence available about the perfumes of ancient Egypt, Persia, and Rome. In 2003, archeologists unearthed the world’s oldest known perfume factory in Cyprus. Archaeologists theorize that this mud-brick building and the perfumes it produced caused Greek worshippers to begin associating the island with Aphrodite, the goddess of sex and love. (Born from the magical remnants of the sky god’s testicles, which had been separated from his body and cast into the sea by Cronos, the Titan god of harvest, Aphrodite supposedly walked from the foaming waters of the sea and onto the beach at Paphos, an ancient settlement located on the southern coast of the island.) Analysis of the material found on-site revealed that these ancient perfumers were using plant-based ingredients like pine, coriander, bergamot, almond, and parsley, among others.

These perfumes all sound rather pleasant, don’t they? I can imagine dabbing almond oil mixed with a bit of bergamot on my wrists, catching a botanical draft of scent here and there as I move. It seems terribly obvious that people may want to smell like plants. Some of the earliest pieces of art represent flowers, leaves, and trees. Studies have shown that we crave symmetry on an unconscious level, and we’re drawn to color, so it makes perfect sense that flowers would hold our attention with their Fibonacci spirals and vivid hues. I can even understand why curiosity might compel someone walking along a beach to pick up a chunk of marine fat and sniff it. It’s a bit harder to understand the moment when medieval perfumers made the conceptual leap from smelling the glandular sacs of dead musk deer to dabbing it on their pulse points. Yet at some point, this must have happened, for starting after the Crusades, Europeans became obsessed with musk.


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Like many prized spices, fabrics, and luxury items, musk came to Europe from the Far East. Derived from the Sanskrit word for testicle, “musk” refers to the glandular products of small male Asian deer. These little sacs of animal juice were harvested from the bodies of slain deer and left to dry in the sun. In its raw form, musk smells like urine, pungent and sharp. But after being left to dry, musk develops a softer scent. The reek of ammonia fades, and it becomes mellow and leathery. It stops smelling like piss and begins to smell like fresh sweat, or the downy crown of a baby’s head. It gained a reputation as an aphrodisiac; according to some legends, Cleopatra used musk oils to seduce Mark Anthony into her bed. The size of musk molecules also contribute to its perfume popularity: Larger molecules oxidize slower, so musk’s comparatively large molecules last longer than other odors and allow it to extend the life of other scents. Its fixative property means musk is a base note in many perfumes, even ones that don’t smell overtly musky.

In 1979, musk deer were listed as an endangered species by the Convention on International Trade in Endangered Species of Wild Flora and Fauna (CITES), so it’s no longer legal to use natural musk in commercial perfumes. However, Tibetian musk deer are still killed for their glands, and a brisk trade in poaching has resulted in some illegal musk showing up online. Musk is also used in some traditional Chinese and Korean remedies, which helps the substance remain one of the most valuable animal products on earth. In his book The Fly in the Ointment, Joe Schwarcz, director of the McGill University Office for Science and Society, points out that musk is “more valuable than gold.”

Civet is a more unknown fragrance, though it also appears frequently in perfumes. Made from the glands of a mammal that shares the name of the scent, civet is similar in structure to musk on a molecular level but smells even more animalistic, according to people who have actually sniffed it. “They have a general odor about them that is very pungent,” says Jacqueline Menish, curator of behavioral husbandry at the Nashville Zoo. Civets are uncommon zoo creatures. They are neither felines nor rodents, though they’re commonly mistaken for both. Although few visit the zoo just to glimpse these odd little nocturnal creatures, the Nashville Zoo has several banded palm civets because the zoo director “just loves them.” (You may have heard of civet coffee, a product made by force-feeding Asian palm civets coffee beans, then harvesting them from their poop. Society, it seems, has come up with several odd ways to make money from civet asses.) When they are startled, frightened, or excited, civets “express” their anal glands, and the greasy liquid “shoots right out.” The scent hangs in the air for days. “I guess I could see if it was diluted it might not smell as offensive,” Menish concedes. “But it can be really bad if it hits you.”

Unlike musk, civet can be collected without killing the animal, but it’s not a cruelty-free process. Civets are kept in tiny cages and poked with sticks or frightened with loud noises until they react and spray out their valuable secretions. Commercial perfumers no longer use genuine civet in their fragrances, but James Peterson, a perfumer based in Brooklyn, owns a very small vial of civet tincture. “It smells terrible when you first smell it,” he says. “But I have some that is five years old, and it gets this fruity quality as it ages. In a tincture, it gets this rich scent that works wonderful with florals.” On a few occasions, Peterson has used genuine musk or civet to make “tiny amounts” of specialty perfumes, and the resulting blends have an “intensely erotic draw.” Customers report that these dark and dirty smells are potent aphrodisiacs. “When it’s below the level of consciousness, that’s when it works best,” he adds.

The reek of ammonia fades, and it becomes mellow and leathery. It stops smelling like piss and begins to smell like fresh sweat, or the downy crown of a baby’s head.

Like musk and civet, ambergris comes from an animal, but making it doesn’t necessarily involve murdering whales. Whales have historically been killed for their bodily products, including their oil, spermaceti, and their stomach contents, but it’s more likely now that ambergris is beach-found since it is only produced by an endangered species, sperm whales. The waxy substance forms in the hindgut of a sperm whale to protect their soft interiors from hard, spiky squid beaks. According to Christopher Kemp, author of Floating Gold: A Natural (and Unnatural) History of Ambergris, ambergris begins as a mass of claw-shaped horns that irritate the whale’s digestive systems. As the mass gets pushed through the whale’s hindgut, it grows and slowly becomes “a tangled indigestible solid, saturated with feces, which begins to obstruct the rectum.” Once it passes into the ocean, it begins to slowly mellow out. The black, tar-like wad is bleached by the ocean until it becomes smooth, pale, and fragrant. It ranges in color from butter to charcoal. The most valuable ambergris is white, then silver, and finally moon-gray and waxy. It’s believed that only 1 percent of the world’s sperm whale population produces ambergris. It’s very rare, very bizarre, and very valuable.

The human appetite for ambergris dates back to ancient times. The Chinese believed it was dragon spit that had fallen into the ocean and hardened, and the ancient Greeks liked to add powdered ambergris to drinks for an extra kick. King Charles II of England liked to eat ambergris with eggs, which was apparently a fairly common practice among the aristocracy in England and the Netherlands. It shouldn’t be surprising that people engaged in some light coprophagia — smell and taste are so deeply linked, and while I can’t attest to the taste of ambergris, I can say that it smells beguiling. Given the chance, I would sprinkle some silvery whale powder on my eggs, just to see what it was like. (It’s certainly no stranger than eating gold-coated chicken wings — another practice seemingly designed to destroy value by passing the desired object through a series of rectums until it reaches the inevitable white bowl.)

In perfume, ambergris is often used to boost other scents. It plays a supporting role rather than a starring one, for although the smell is fascinating, it isn’t very strong. It has an unearthly fragrance. It smells like the sea, but also like sweet grasses and fresh rain. It’s amazing that something made in the bowels of the whale could smell so pure. If you found fresh ambergris, midnight black and sticky and stinking, perhaps you wouldn’t want to eat it. But with distance and dilution, ambergris is transformed from animal garbage to human ambrosia.

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Schwarcz’s book offers one reason why we’re drawn to these scents, citing studies that suggest people with ovaries be more sensitive to musk, particularly around ovulation. He cautiously speculates that musk might resemble chemicals produced in humans to attract potential mates.

Over the phone, he is even more wary of speculating about a possible evolutionary explanation for our fragrance preferences. “The sense of smell has been studied thoroughly with surprisingly little results in terms of what we actually know. It’s such a complicated business,” he said. “We don’t know why musk is more attractive to some people than others. We don’t know why it smells differently when it’s diluted, but we know that it does.” When I asked whether we like musk because we’re programmed to enjoy the smells of bodies, he was quick to turn our talk toward the “issue of pheromones, which “may not actually even exist at all” in humans, despite our desire to attribute various observed phenomenon to the invisible messengers. According to Schwarcz, much of what the general population knows about pheromones only applies to certain nonhuman species. For instance, boar pheromones are well understood, easy to replicate, and used by farmers to increase the farrowing rate amongst their stock. Some of the perfumes that boast “real pheromones,” like Jovan Musk and Paris Hilton’s eponymously named scent, may contain pheromone molecules — ones that pigs would find very enticing.

But where science fails to offer a satisfactory explanation, artists can step in, providing an illuminating tool to help understanding our relationship to desire and aesthetics. For perfumer Anne McClain, co-owner of MCMC Fragrances in Brooklyn, it is the tension between foul and sweet that elevates a fragrance from consumer product into the realm of art. This is key when it comes to repugnant ingredients, from indolic florals to musky secretions. The indecent element becomes a secret of sorts, a gruesome piece of marginalia scribbled alongside the recipe, visible to only those in the know but appreciated by all. The foulness whispers below the prettiness, and combined, these various elements create a scent that smells paradoxically clean and dirty, light and dark.

“Indole is what makes the scent of jasmine interesting,” she says. “It makes you want to come back and smell it again — it has an addictive quality to it.” Unlike citrus scents, which are one-note and rather simplistic, florals have an element of decay, a whiff of putridity. McClain rightfully points out that this is part of what makes flowers themselves attractive to bees and other pollinators. Corpse flowers famously smell like dead bodies, but so do many other blossoms, just to a lesser extent.

Plus, humans are by nature “just a little bit gross,” McClain says. Like civets, musk deer, and whales, we shit, we secrete, we mate, and sometimes we vomit. But we also give birth and create beauty, and for McClain, it’s this life-giving ability that links blossoms and humans. “I think there is a depth to anything that is made of life and creates life. There’s something inherently sexual in that,” she says. “Even though something like civet will smell gross on its own, it adds an element of reality.” When layered properly with other olfactory delights, this can create an evocative smell, one that you want to return to, to interrogate with your nostrils the same way you might pore over a painting. Through layering pleasure on top of disgust, perfumers can create something that resembles life — exquisite, fleeting, and mysterious.

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Katy Kelleher is a freelance writer and editor based in Maine whose work has appeared in Art New England, Boston magazine, The Paris Review, The Hairpin, Eater, Jezebel, and The New York Times Magazine. She’s also the author of the book Handcrafted Maine.

Editor: Michelle Weber
Factchecker: Matt Giles
Copyeditor: Jacob Z. Gross

Naomi Osaka Deserves to Have Her Moment

Naomi Osaka speaks to the media after winning the 2018 U.S. Open women's singles finals match. (Photo by Sarah Stier/Getty Images

I love tennis. So much so that in lieu of a vacation this summer, I stayed in New York and bought a bunch of tickets to the U.S. Open instead. During Thursday evening’s women’s semifinals, I watched Serena Williams come back from a break down in the first set to decisively win her match against Anastasija Sevastova. Naomi Osaka then played a flawless match against American Madison Keys, even with the crowd cheering against her. Osaka pulled off an awe-inspiring feat, saving 13 break points to ensure her place in the Grand Slam championship — her very first.

The stage was set for a history-making match: Williams, a living legend, on one side of the net, going for her twenty-fourth Grand Slam title to tie Margaret Court’s career record a year after giving birth. On the other side was 20-year-old Osaka, the first Japanese woman to reach a Grand Slam final who was poised to be the first Japanese tennis player, man or woman, to win a Grand Slam championship. To witness this, I sold my seat in the nosebleeds and spent way too much money to sit just a little bit closer in the middle section. Read more…