Search Results for: health-care

Partners: The Thomases vs. Obama’s Health-Care Plan

Longreads Pick

“I watch my bride who, in doing the same things, when she started her organization, she gives it 24/7 every day, in defense of liberty. You know, and maybe that’s why we’re equally young and we love being with each other because we love the same things; we believe in the same things. So, with my wife and the people around me what I see unreinforced is that we are focused on defending liberty. So, I admire her and I love her for that because it keeps me going.” Then, concluding his speech, he said, “My bride is with me, Virginia Thomas, and some of you may know her. But the reason that I specifically bring it up: there is a price to pay today for standing in defense of your Constitution.”

Source: The New Yorker
Published: Aug 29, 2011
Length: 36 minutes (9,118 words)

The Health-Care Wimps

Longreads Pick

Obama may be impervious to the demons of 1994, but his party is still haunted by the failure of Hillarycare.

Source: Daily Beast
Published: Jul 20, 2009
Length: 4 minutes (1,087 words)

The Unreliable Reader

Aditya Chinchure / Unsplash, Collage by Katie Kosma

Wei Tchou | Longreads | April 2019 | 11 minutes (2,983 words)

“I write this while experiencing a strain of psychosis known as Cotard’s delusion, in which the patient believes that they are dead,” the novelist Esmé Weijun Wang writes at the beginning of “Perdition Days,” an essay from her new book, The Collected Schizophrenias. (Read an excerpt on Longreads.) “What the writer’s confused state means is not beside the point, because it is the point,” she continues. “I am in here, somewhere: cogito ergo sum.” The passage moves swiftly, from first person agency (“I am writing”) to distanced third person (“the patient,” “the writer”) to the famous Descartes assertion, in Latin, “I think, therefore I am.” As a reader, it’s astonishing and a little unnerving to consider the immediacy of the prose, your intimacy with a speaker searching to find the correct vantage from which to narrate the strangely drawn, difficult-to-map districts of her mind.

That same authorial compulsion to navigate and survey pervades the book, which is notable for its subject matter alone: a first-person investigation of “the schizophrenias,” as Wang describes the four overlapping classifications of the mental disorder listed by the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition, often shortened to DSM-5. (Wang was diagnosed with schizoaffective disorder, bipolar type, in 2013.) Wang approaches the work of writing about her mental illness as if she were reporting from a foreign place, returning to it diligently, pursuing dark corners as if to case the joint. She publishes email correspondences between herself and her physician, written in a period of psychosis. She considers her desire for motherhood through the lens of her time as a counselor at Camp Wish, a bipolar youth camp. She recalls scenes from her three involuntary hospitalizations, describing the trauma of those stays, as well as the slippery interviews on which those hospitalizations were based. Read more…

Longreads Best of 2018: Business Writing

We asked writers and editors to choose some of their favorite stories of the year in various categories. Here is the best in business writing.

Max Abelson
A reporter on Wall Street for Bloomberg News, where his work often goes in Businessweek. His stories were included in Columbia University Press’ Best Business Writing anthologies in 2015 and 2013.

Sign Here to Lose Everything (Zeke Faux and Zach Mider, Bloomberg News and Businessweek)

Good investigative journalism can leave you with that curdled taste of outrage in your mouth, but only great journalism can introduce the world to a whole new kind of loan sharking. And it takes something really splendid to jump from a millionaire city marshal to a gangster named Jimmy Dimps, a Maltese Shih Tzu named Coco, a town called Canandaigua, a drug smuggler named Braun, actual piles of cash, bloody vomit, and 30,000 court cases. Faux and Mider’s work is the best I’ve ever read on predatory lending.

A Business With No End (Jenny Odell, The New York Times)

My favorite story on commerce of the year has more in common with the dreaminess of the nuclear sequences from Twin Peaks: The Return than the everyday stock charts on CNBC. In one sense it’s a story about absolutely nothing, if you consider that the news peg is basically some packages that started arriving at someone’s house one day. But it’s also a story about everything — Christianity, con artists, bookstores, the Internet, real estate, obsession, startups, copyrights, maps, and moisturizer. I was very sorry when it was over.

Read more…

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…

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

Jose A. Bernat Bacete / Getty, 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.

Ten Translations of Care

Illustration by Wenting Li

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

 

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

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

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

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

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

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

White Men On The Edge of a Nervous Breakdown

Marchers at Portland, Oregon's Women's March, Jan. 20, 2018 (Dave Killen for The Oregonian / AP)

The rights and priorities of white men have always overshadowed those of people of color and women in the United States. They are, however, a ruling minority — white men comprise only a third of our national population.  at The Cut credits shifting demographics and destabilizing movements like #metoo with making white men itchy enough that they’re trying to minimize and invalidate their disruptors.  

White men are at the center, our normative citizen, despite being only around a third of the nation’s population. Their outsize power is measurable by the fact that they still — nearly 140 years after the passage of the 15th Amendment, not quite 100 years after the passage of the 19th Amendment, and more than 50 years after the passage of the Civil Rights and Voting Rights Acts — hold roughly two-thirds of elected offices in federal, state, and local legislatures. We have had 92 presidents and vice-presidents. One-hundred percent of them have been men, and more than 99 percent white men.

The suffocating power of our minority rule is evidenced by the fact that we’re always busy worrying about the humanity — the comfort and the dignity — of white men, at the same time discouraging disruptive challenge to their authority.

And yes, some of the upholders of minority power are themselves women — women working in service of a brutal white patriarch and the brutal white patriarchal party he leads. Similarly, a majority of white women voted for Trump, and always vote for his party, because they benefit from white supremacy even as they are subjugated by patriarchy. This same dynamic explains why higher percentages of men in every racial category voted for Trump and his party: They gain through the patriarchy even as they are oppressed by white supremacy. This is how minority rule persists.

To publicly rebuke a black woman’s support for protest and not the powerful white patriarch’s thinly veiled call to violence against her is to play on the very same impulses that Trump himself plays on: racist and sexist anxiety about noncompliant women and nonwhites, and the drive to punish them.

These people had nice dinners in restaurants interrupted. They did not have their children pulled from their arms, perhaps forever; they were not refused refuge based on their country of origin or their religion or the color of their skin; they were not denied due process; nor were they denied a full range of health-care options, forced to carry a baby against their will, separated from their families via the criminal justice system, or shot in the back by police for the mere act of being young and black.

One reason that the fury of women is regularly dismissed as theatrical and marginal and unserious is precisely because, on some level, the powerful must sense that it is the opposite of all of those things. That, in fact, it presents a very real threat.

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A Frustrating Year of Reporting on Black Maternal Health

Danielle Jackson | Longreads | June 2018 |3370 words (14 minutes)

“It’s in fashion to talk about black women’s maternal care,” Bilen Berhanu, a Brooklyn-based full-spectrum birth doula told me recently. I’d asked her about the outpouring of news stories, from multiple national outlets, about infant and maternal mortality over the past twelve months.

The reporting has added flesh and aching detail to what I’ve come to think of as an embarrassing public health crisis in the United States. Among industrialized countries, our nation has the highest rate of infant deaths. We’ve had dramatic declines since 1960, but we have not kept pace with other nations we’d consider peers. New American moms face similar danger: The rate of maternal mortality in the U.S. has been rising since 2000 while falling for most other nations in our subset.

Deep, persistent inequality — access to safe neighborhoods and hospitals, functioning schools, healthy food — plays a part. But across family income levels and educational attainment, the infant mortality rate for black babies is more than twice than it is for whites, according to data from 2007-2013. Black mothers are also more imperiled than white ones — they are three to four times more likely to die from pregnancy-related causes leading up to or within a year after giving birth. In New York City, black mothers are 12 times more likely to die than their white counterparts. Read more…