Search Results for: cancer

The Strongest Woman in the Room

Getty Images / Photo illustration by Katie Kosma

 

Kitty Sheehan | Longreads | October 2018 | 15 minutes (3,840 words)

July 27, 1978

Betty Sheehan pushed the 8-track cassette into the player and backed Dan’s car out of her driveway. The Stylistics. Dan’s favorite. She’d never heard it. When she rode in his car, she always made him turn the music down.

Dan was her son, who might be dying in a hospital, 60 miles away.

She was using all her energy to deny this and to keep those around her from believing it. Especially him.

You are everythingggggg, and everything is youuuuuuu…

She was surprised at how beautiful the music was. This beauty flooded her with sadness.

She pulled the cassette out and jammed it into the box on the floor of the passenger side. Her last time as Dan’s passenger was two months ago, when he took her to pick up her car at the repair shop. This seemed like years ago.

She rolled down the window a bit. It had to be almost 100 degrees outside. July in Iowa is no joke. She pulled a Doral from her purse on the seat beside her, put it in her mouth and pushed in the car lighter, surprised it worked.

Driving Dan’s car was like being in a room with him. Or what it had been like to be in a room with him a year ago. The car, a dark green Pontiac LeMans, smelled faintly like a gym bag, or a sweaty jacket. She looked in the back seat to see if maybe his Iowa State  jacket was there. No. He hadn’t needed a jacket for some time.

She thought of his favorite pair of jeans, the ones he wore almost all the time. The hems were ragged. And a pair of tan corduroys he’d had for a couple years. He wore those with a soft navy blue v-neck sweater; he was especially handsome in that. His dashing, dark curly hair offset the sprinkling of faded freckles on his 22-year-old cheeks.

As a little boy, he wore brown corduroys with an elastic waist and flecks of white dotted over them. They fit him for only a short time because he grew so fast, but he still wore through the knees, and Betty patched them with green flannel patches.

She’d taken a black and white photo of him in those pants, in front of the Christmas tree, at age four. His long-sleeved white t-shirt tucked into them, he squinted at the camera flash. He still squinted at a camera flash.

That tree, that turquoise chenille couch, those gray and white chintz curtains and that Kodak Brownie camera: when did that world stop, and how did this new one start?

It was impossible to imagine who she might have been then, when Dan was four.
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Dawn of Dianetics: L. Ron Hubbard, John W. Campbell, and the Origins of Scientology

Alec Nevala-Lee | Longreads | October 2018 | 21 minutes (5,739 words)

I.

For most of his life, John W. Campbell, Jr., the editor of the magazine Astounding Science Fiction, had trouble remembering his childhood. He had filled his stories with extravagant images, but he had no visual memory, to the point that he was unable to picture the faces of his own wife and children. When L. Ron Hubbard, one of his most prolific writers, approached him with the promise of a new science of the mind, he was understandably intrigued. And he was especially attracted by the possibility that it would allow him to recall events that he had forgotten or repressed.

In the summer of 1949, Campbell was thirty-nine years old and living in New Jersey. For over a decade, he had been the single most influential figure in what would later be known as the golden age of science fiction, and he had worked extensively with Hubbard, who was popular with fans. The two men were personally close, and when Hubbard, who was a year younger, suffered from depression after World War II, Campbell became concerned for his friend’s mental state: “He was a quivering psychoneurotic wreck, practically ready to break down completely.”

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Announcing the 2018 Longreads Member Drive

I’m Mike Dang, editor-in-chief of Longreads.

Today we’re launching the 2018 Longreads Member Drive with the goal of raising $50,000 from readers by November 2. All of this money will go directly into a story fund that’s exclusively used to support work from writers, photographers, and illustrators from all around the world.

In addition, for every dollar you give, WordPress.com will generously match with $3. This means that if we raise $50,000, we have the potential to add $200,000 to our story fund for upcoming writing and investigative projects. This is why your support during our drive is so crucial. Read more…

A Place to Stay, Untouched by Death

Unsplash / Pexels / Photo illustration by Katie Kosma

Jane Ratcliffe | Longreads | October 2018 | 12 minutes (2,950 words)

 

A place to stay untouched by death
Does not exist.
It does not exist in space, it does not exist in the ocean,
Nor if you stay in the middle of a mountain. 

-Buddha

When my mother grew quite ill and it became clear she would soon die, we brought her from the hospital to my parents’ house where they’d lived for nearly 50 years. My father, brother, niece, and I moved the dining-room table and chairs into the living room and hospice came in and set up one of those heavy, mechanical beds with cold metal side rails and a device that moved the head and feet up and down. It was an ugly bed. How many people before my mom had died in it, I wondered. It came with a sparse, lumpy mattress. My mom was skinny as a blade of grass by then and needed padding for her jutting bones. So we purchased an additional mattress to rest on top of her existing one; a mattress that would be hers alone, upon which no one, besides her, would die.

My parents grew up working class in London during World War II where they acquired a lifelong frugality. Inspire by one of the more popular war slogans, “Make Do and Mend,” they reused cooking oil, saved aluminum foil, and sewed up holes in our socks. So, it wasn’t a surprise to discover the Marimekko sheets of my late teen years in my parents’ linen closet. I was 54 then, but the background white on those sheets was still crisp and bright; the pinks and oranges and yellows of the flowers still exuberant. There were no other twin sheets in the house, so as my mom rested in her favorite velvet chair in the family room, my dad and I made up the bed with them. It was February, so we placed one blanket on top and folded another near where her feet, now tender in their slouchy socks, would rest.

And there it was: My mother’s death bed. All done up in my college dorm sheets.

My mind raced through the things that had happened on those sheets. Things that didn’t belong to this moment. I remembered my parents moving me into my college dorm in 1980. My mom always said that the moment all my belongings were in my room, I shushed them away. But I don’t think that’s entirely true. I remember unpacking my brand-new sheets, freshly laundered by my mom, and together, the three of us, making my bed. I remember them being so proud of me: There I was an undergraduate at the University of Michigan. My mom’s education had ended at age 12 when her school was bombed and my dad’s at 14 when he began his apprenticeship in the tool and dye trade. Such was England in those days.

I was struck by this repurposing of an object for a completely unexpected use. Back when I was 18, screwing my boyfriend on those sheets, slipping between them after a late night at the clubs, over-sleeping for classes sandwiched in them, eating junk food and studying for exams, books sprawled on top of them, sharing secrets with best friends with the sheets tucked around our knees, I could never have imagined my mom would die nestled between them.

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The Power of Shutting Up and Sitting in Silence

Illustration by Missy Chimovitz

Kathryn Smith | Longreads | October 2018 | 14 minutes (3,450 words)

 
I spent New Year’s in a hot pink temple shaped like a lotus flower, surrounded by 100 other people with their eyes closed and their legs crossed like pretzels. I had taken a vow of silence and not spoken to another human in three days. It was so quiet that I could hear the twinkly lights on the ceiling humming.

I’m a mid-30s white woman with a cat, a small apartment, and a mid-level office job. I don’t meditate, really. I vociferously hate chanting. I don’t know what I think about swamis in long orange robes who believe energy runs through everything and rocks have feelings — I have a 401K and a thoroughly sensible life.

But I went to an ashram because I thought it might fix something, and I think it kind of did.
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My Fathers and Hip-Hop Taught Me About Self-Care as A Black Man

Longreads Pick

“Embracing mortality, in this sense, is to prepare a way for my future children. If this cancer is hereditary, is it not also my responsibility to do everything within my humanly power to ensure, my children nor I, have to suffer?”

Source: Catapult
Published: Oct 9, 2018
Length: 12 minutes (3,093 words)

Charting the Love — and Betrayal — in Our Stars

Illustration by Helen Li

Cherise Morris | Longreads | October 2018 | 22 minutes (4,598 words)

 

“What’s the first word that comes to mind when you think of ‘love’”? I asked you this question four months into our relationship, while writing an essay about love for a contest I never entered.

This was long before we exchanged the L-word, back when the winter’s cold gave us short days and long nights spent with no one but each other.

“Uh, can we come back to that one? Gimme some more options first.”

So, we did a quick word association activity. I stated words and you responded with the first thing each brought to mind.

I said, “water.”

You said, “me.”

“Tree.” “Life.”

“Windows.” “Light.”

“Ground.” “Floor.”

I said, “air.”

And you said, “love.”

Then, with the smile of a fox you replied, “Ah, I see what you did there.”

 

***

I was born in the image of my mother with broken teeth and a half-broken heart to match; air gave birth to air. My mother is an Aquarius, and I, a Libra — both “air signs” — and perhaps that’s why we’ve always gotten along.

I watched her, full-hearted and lonesome my entire childhood and adolescence, longing to be consumed by a certain kind of fairytale love. A love which never lies to you, never takes you for granted, never hurts or harms. But if I know anything to be true, it is that the perfection of fairytales is a grandiose illusion, which is why we love them so. Little girls are taught to long for the fairytale love stories of princesses far more than the bittersweet kind that grow us into goddesses.

According modern western astrology, Libra is the cardinal air sign of the zodiac, ruled by Venus, the planet named for the Roman goddess of love, which governs the ways Libras seek and build relationships. We value affirmation, aesthetics and the rosier side of justice above all else. At all costs we seek to avoid the topsy-turvy shakiness of conflict and anything less than perfect equilibrium, while often settling for pseudo-perfect if it will keep the boat from rocking for a while. Those living under the sign represented by the cosmic scales are obsessed with the romance of keeping up appearances, and thus, are predisposed to a sometimes-never-ending quest for alignment and acceptance through partnerships. They exalt a fabled euphoria, a dream of being made to feel weightless by the love of another. But if I know anything to be true, it is that love, despite its intangibility, is the weightiest of matters.

Although, one’s approach to love and relationships can’t be simply boiled down to the properties associated with one’s sun sign. Astrology is more complex than that. But back when I started to live this story, I did not yet have a nuanced understanding of the workings of the cosmos. I fell into the predictability of the Libran archetype, wanting to fall in love only to feel what it was like to be loved.

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Banished

Photo by Emily Kassie.

Beth Schwartzapfel and Emily Kassie / The Marshall Project / October 2018 / 13 minutes (3,412 words)

This article was co-published with The Marshall Project, a nonprofit news organization covering the U.S. criminal justice system. Sign up for their newsletter, or follow The Marshall Project on Facebook or Twitter.

Part 1: NO MERCY

The sun has barely risen over Miami, and Dale Brown loads an orange shopping cart with everything he owns. Through the morning’s swampy heat, he pushes the cart to the edge of the railroad tracks, where he hauls the items one at a time into some overgrowth and covers them with branches. His tent from Walmart, meticulously rolled and packed. A garbage bag with clothes and a blanket. He unscrews the lid to a plastic gallon jug and empties his urine into the brush.

“You feel like an animal,” says Brown, 63.

This industrial neighborhood just beyond Miami’s far western edge is home to lumber yards, auto parts warehouses, and, in recent months, roving encampments of homeless sex offenders. This summer, Brown and a half-dozen other men were living beside a chain-link fence outside a hardware company. Five blocks away, more lived in tents and makeshift shacks. And 12 blocks from there, about a dozen arrived in cars each night.

A combination of federal, state and local laws has rendered almost all of Miami-Dade County off-limits to sex offenders with young victims. The feds say they’re not allowed in public housing. The state says they can’t live within 1,000 feet of a day care center, park, playground, or school. The county says they can’t live within 2,500 feet of a school. In a place so densely populated, forbidden zones are everywhere. And in the narrow slivers of permitted space, affordable apartments with open-minded landlords are nearly impossible to come by. Read more…

Hating Big Pharma Is Good, But Supply-Side Epidemic Theory Is Killing People

Jose A. Bernat Bacete / Getty, Photo illustration by Katie Kosma

Zachary Siegel | Longreads | September 2018 | 20 minutes (5,459 words)

After breakfast each Sunday we had the option to attend a spiritual group. The facility’s spiritual counselor was a tall woman with greying frizzy hair who collected vaguely heart-shaped rocks, and always had several on her desk that she’d gift to patients who stopped by her office.

She wouldn’t give you just any old rock; no, the rock she’d choose for you had a story: its color, unique dents and chips resembled resilience, an ability to withstand harsh elements while retaining your heart’s shape. She insisted the Sunday group wasn’t religious. “Religion is for people who’re afraid of going to hell,” the popular saying around Alcoholics Anonymous goes. “Spirituality is for people who have already been there.” So we sang along to “Let it Be” by The Beatles.

We had mostly blamed ourselves for what landed us inside an addiction treatment facility. But we were young, so we also blamed our parents (thanks Obamacare!). The reason why we were all in treatment and not quarantined in jail is because we were mostly white and upper-middle class. It was the summer of 2012 and young people like me all over the country were developing opioid addictions. The difference between us and the vast majority of others was our family’s resources, namely insurance that covered the $1,000 per day cost for a residential stint at a spiritually tinged hospital-meets-lake-house just outside the Twin Cities (the land of 10,000 treatment centers). The campus edged Medicine Lake, which I always found cruel because the facility didn’t much like to use medicine at the time, medicine that would’ve eased my withdrawal and given me the best chance at kicking for good. “We don’t do that here,” I recall a nice Minnesota doctor saying.

Addiction experienced in the first-person feels like watching a movie shot entirely in extreme close-ups. No matter how hard you try, you can’t see the world beyond the frame. A tolerance builds after a while and you grow used to the shaky, nauseating ride. We couldn’t have possibly known it at the time, that we weren’t the stars in our very own drama. The content of our stories differed in the details, but the tone was uncannily similar: how prescription painkillers first took hold; after pharmaceuticals became scarce and expensive, how we, as a generation in unison, playing a fucked up game of Red Rover, beelined toward heroin. Another thing we had in common was a lot of dead friends. Read more…

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.