Search Results for: Medicine

Death Rattle: The Body’s Betrayals

Transi tomb, Lula Tahula

Ellen-Wayland Smith | Longreads | March 2018 | 15 minutes (4,127 words)

One morning about a year ago I was sleeping on the sofa in my parents’ apartment when I was woken by the sound of my father dying in the next room.

At first I couldn’t tell what the noise was, or even locate where it was coming from. It was a ragged, scraping sound, like metal being pulled through tightly-packed glass. Then it shifted: like someone breathing in a viscous liquid in greedy gulps, aspirating yogurt. When I realized the noises were coming from my father’s throat, I froze.

According to the hospice manual I had scanned the night before, “death rattle” refers to the sound produced by “the pooling of secretions” in the throat after the body loses its ability to cough them up. “The air passing through the mucus causes this sound,” the booklet instructed me matter-of-factly. This symptom is listed under the rubric “When Death is Near.” Family members of the dying person frequently find this noise upsetting, according to the medical literature. Hospice workers recommend an anti-secretion medicine to dry up the mucous: one syringe-full against the gum.

We had had almost no time to prepare. A mere ten days earlier, my father had gone in to his doctor’s office to pick up the results of a routine scan, which turned out not to be routine at all: stage four pancreatic cancer. His physician, an old family friend, almost teared up when he delivered the news. “It is very difficult for me to say this to you,” he’d begun, gingerly. “Not as difficult as it is for me to hear it,” my father responded. He was 81 but looked much younger: six-foot-two, straight as a poker, salt-and-pepper hair and beard. After a bout with polio when he was 14, he’d never been sick a day in his life. We thought he was invincible.
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The Invisible Lives of Young Women With Chronic Illnesses

Michele Lent Hirsch

Jessica Gross | Longreads | March 2018 | 18 minutes (4,580 words)

When Michele Lent Hirsch was growing up, she was hardly ever sick. In college, she had to have hip surgery; by her mid-20s, she had also been diagnosed with idiopathic anaphylaxis, thyroid cancer, and Lyme disease. In the midst of these issues, her father, who’d had multiple sclerosis, ended his own life. Now in her 30s, Hirsch has had years of experience moving through the world as a chronically ill young woman. In her new book, Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine, she interweaves personal experience and reporting to examine, through the lens of chronic illness, issues that she believes all women face.

Hirsch and I are friends—we get together every few months to talk about writing and our lives (she’s a poet, too)—and yet I didn’t know the depth of her experience until I read her thoughtful, complicated, and beautifully written book. I think that’s part of her point: to bring these under-discussed experiences into the light. We met at a restaurant in the West Village and spoke about how chronic illness throws issues of being young and female into sharper relief, how illness intersects with not only gender and age but also sexuality and race, and how, in the midst of these deeply challenging experiences, there is a basic need for empathy.

* * *

I imagine it was an intense decision to write publicly about your experience of illness. Can you talk about deciding to write the book?

I’d had this idea for an embarrassing number of years before I acted on it. I’d had hip surgery, I’d had anaphylaxis that almost killed me, but it wasn’t until I got cancer that I started to think, “This is a very particular experience that I’m having.”

I was diagnosed with cancer in 2011, right before my 26th birthday. Originally, I wanted to write an essay about the particulars of being young, female and sick and all the ways that illness bumped up against what was already difficult about being a young woman in the world. I mentioned it to a friend who was an editor and a writer, and she said, “That sounds bigger than an essay. That sounds like a whole book.” I thank her in the back of the book, because she was right.

For a few years, I didn’t believe her. I think that’s because so many women don’t talk about this stuff with each other, so you could be friends with someone and not even know that they have a chronic illness. But over the next few years, I started to see how often it just came up at parties or in conversation with a stranger or a friend of a friend. I began to realize that not only was this bigger than an essay, it was also way bigger than my experience. So at some point I said to my friend, “You’re right, it’s a book.” It is this vicious cycle: If you keep thinking you’re the only one, then you’re not going to share your experience, and then no one shares it, and then we’re all living in these weird, sad little silos. Read more…

Kara Walker’s Subtlety

(Photo by Andrew Burton/Getty Images)

Natalie Hopkinson | A Mouth Is Always Muzzled: Six Dissidents, Five Continents, and the Art of Resistance | The New Press | February 2016 | 14 minutes (3,721 words)

* * *

Like a web
is spun the pattern
all are involved!
all are consumed!
Martin Carter

Inside the abandoned Domino Sugar Refinery in New York, the first thing that hits you is the smell: over a century’s worth of industrial grime, clinging to black, molasses-coated walls. At first whiff, it is kind of sweet, like stale cake. As you go deeper into the cavernous brick building, it gives way to a sour curdling. As my ten-year-old daughter, Maven, describes it: “It’s like how my cat smells when he throws up.”

Maven, my friend Izetta, and I are among more than a hundred thousand people who make a pilgrimage in the summer of 2014 to pay homage to the “Sugar Sphinx,” the seventy-five-foot-long, forty-foot-high creation of Kara Walker, one of the most important and provocative artists working in the United States. The sculpture is forty tons of sugar molded into a ghostly white apparition, part mammy, part sphinx. The line to see her takes more than an hour to travel and stretches out for four long Brooklyn blocks. I spot the writer Gaiutra Bahadur, whose recent book, Coolie Woman, explores the history of indentured sugar workers in Guyana. Bahadur’s research on sugar plantation life and its bitter aftertaste among Guyanese women speaks forcefully to the exhibit we came to see. I wave Bahadur over to join us in line.

The installation’s title, displayed in bold black type painted along the Domino Sugar factory’s brick façade:

A Subtlety

or the Marvelous Sugar Baby

an Homage to the unpaid and overworked Artisans who
have refined our Sweet tastes from the cane fields to
the Kitchens of the New World on the Occasion of the
demolition of the Domino Sugar Refining Plant

The original Domino factory—first built in 1850s Williamsburg— was being torn down, along with the stories of generations of lives that it touched around the world. The factory was just one stop in the sugar industry’s “triangular trade” that created the blueprint for the globalized economy. Investors came from Europe; labor came from Africa; the cane fields were located in points across the Global South. The Domino refinery was the final step before the sugar reached consumers. Raw sugar would arrive at Domino’s forty-thousand-square-foot facility. Through the magic of refinery, pristine white sugar would come out. The profits that followed made sugar a key fuel of Empire.

The title, A Subtlety, is taken straight from history. Centuries ago, “subtleties” referred to elaborate, edible toys made of sugar. These exotic treats and status symbols were first made in the Middle East and popularized among the seventeenth-century European aristocracy. These “subtleties” could be trees, architectural models, or depictions of peasants holding baskets of fruit. There was nothing subtle about them, given what a rare and expensive luxury sugar was at the time. Unveiled at dinner parties, these were ostentatious displays of the host’s clout. The sugar sculptures could also be used to send more subversive messages. “Sly rebukes to heretics and politicians were conveyed in these sugared emblems,” writes Sidney Mintz in Sweetness and Power. Read more…

An Education in Doubt

Cover art for Roald Dahl's novel 'Matilda' / Illustration by Quentin Blake

Catherine Cusick | Longreads | February 2018 | 12 minutes (2,900 words)

We need to scream and argue about this school thing until it is fixed or broken beyond repair, one or the other. If we can fix it, fine; if we cannot, then the success of homeschooling shows a different road that has great promise. Pouring the money we now pour into schooling back into family education might cure two ailments with one medicine, repairing families as it repairs children.

— John Taylor Gatto, Dumbing Us Down

I stood and, still shaking, tried to pry loose the small length of copper tubing. I almost had it when Dad flung a catalytic converter. I leapt aside, cutting my hand on the serrated edge of a punctured tank. I wiped the blood on my jeans and shouted, “Don’t throw them here! I’m here!”

Dad looked up, surprised. He’d forgotten I was there.

— Tara Westover, Educated

When I was 9, my dad brought home a copy of Matilda on VHS. Every time I watched Matilda best her unfit parents and take down the unforgivably violent Trunchbull, something would swell in my heart.

“Daddy,” Mara Wilson pleads up to Danny DeVito, one of the only actors ever to plead at him in that direction. “You’re a crook.”

“What?” DeVito says, turning away from training Matilda’s brother in the junk tricks of his trade at the auto shop. He’s teaching his son how to fudge the mileage on used cars by rewinding an odometer with a hand drill.

“This is illegal,” Wilson says, stomping an indignant little foot.

“You make money?” DeVito asks a 9-year-old. “Do you have a job?”

“No,” Wilson replies. (Of course, Wilson does have a job. We are watching her do it. She’s hard at work headlining a major motion picture that ends up grossing $33 million at the box office.)

I, too, am 9 years old, watching Wilson back in 1996, crossing my gangly legs one over the other on the beige carpet in my family’s den.

“But don’t people need good cars?” Wilson-as-Matilda asks. “Can’t you sell good cars, Dad?”

“Listen, you little wiseacre,” DeVito begins, launching into one of those custom-made lines for movie trailers. “I’m smart, you’re dumb; I’m big, you’re little; I’m right, you’re wrong. And there’s nothing you can do about it.”

Wilson takes one decisive look around. She sees her father’s signature hat next to some superglue.
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Is This the Most Crowded Island in the World? (And Why That Question Matters)

(Alex MacGregor)

Alex MacGregor | Longreads | February 2018 | 19 minutes (5,053 words)

Geographers have an affinity for superlatives. Among the millions of named features on Earth, if something can claim to be the biggest, tallest, deepest, longest, or otherwise most extreme, it gets a lot of attention.

Asserting any superlative involves a degree of hubris. Our world has been picked over for superlatives, but how sure can we really be about any one claim? Any elementary school class will recite in unison that Mount Everest is the tallest mountain in the world — that is, unless the class happens to contain an Ecuadorian student. Ecuadorians correctly learn that the highest mountain in the world could be measured by distance from the center of the earth, rather than from mean sea level. By this measure, Ecuador’s Chimborazo is taller than Everest. An asterisk is warranted for even this basic claim.

Of much less prominence on the globe, but also a tricky superlative to nail down, is the most densely populated island in the world. A handful of the perhaps 100,000 islands on Earth have stratospheric population densities: Ultra-crowded islands exist in places as disparate as Kenya, Hong Kong, France, and the Maldives, but it’s regularly cited that, by the numbers, the densest of all is Santa Cruz del Islote, a 3-acre islet of about 1,200 people off the coast of Colombia. This claim has been repeated in numerous publications, most recently by The New York Times, and it’s even the subject of a short documentary. Journalists usually emphasize the bonds of family and community in a place so radically removed from western consumerism.

All of which makes for an uplifting read about a fascinating place. But what if the premise is wrong? I can’t comment on the experience of life on the island. But we’ve already learned to be wary of superlative claims, especially when westerners are the ones keeping score; what about this one? What if this is merely a very crowded island, and not the most crowded island?
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Cataloguing the Detritus of Relationships Past

While all happy couples might not be alike, each unhappy couple is surely unhappy in its own way. And when their relationships end, each leaves its own trail of uniquely meaningful detritus in its wake.

There’s a monument to this phenomenon — the Museum of Broken Relationships, in Zagreb, Croatia, created in 2003 after founders Olinka Vištica and Dražen Grubišić ended their relationship. For the Virginia Quarterly Review, essayist Leslie Jamison visits the museum and considers what stories are told by the objects once shared between former loved ones. She also lauds the idea of memorializing relationships past, and not running away from the melancholy lingering from them.

I could summon my own lost loves as an infinite catalog: a pint of chocolate ice cream eaten on a futon above a falafel shop; a soggy tray of chili fries from the Tommy’s at Lincoln and Pico; a plastic vial of pink-eye medicine; twenty different T-shirt smells; beard hairs scattered like tea leaves across dingy sinks; the three-wheeled dishwasher tucked into the Iowa pantry I shared with the man I thought I would marry. But perhaps the deeper question is not about the objects themselves—what belongs in the catalog—but about why I enjoy cataloging them so much. What is it about the ache that I enjoy, that etched groove of remembering an old love, that vein of nostalgia?

After breaking up with my first boyfriend, when we were both freshmen in college on opposite sides of the country, I developed a curious attachment to the sadness of our breakup. It was easier to miss the happiness of being together when we were no longer together. It was certainly easier than muddling through what our relationship had turned into: something strained by distance, and the gap between the different people we were becoming. Rather than sitting through stilted phone conversations and the hard work of trying to speak to each other, I could smoke my cigarettes outside at night in the bitter Boston cold, alone, and miss Los Angeles, and what it had been like to fall in love there: warm nights by the ocean, kissing on lifeguard stands. I was more comfortable mourning what the relationship had been than I’d been inhabiting the relationship itself. I loved the way sadness felt pure and ascetic: smoking a lot and eating nothing and listening to sad songs on repeat. That sadness felt like a purified bond, as if I was more connected to that man in missing him than I’d ever been while we were together. But it was more than that, too: The sadness itself became a kind of anchor, something I needed more than I’d ever needed him.

Olinka believes that “melancholy has been unjustly banished from the public space,” and told me she mourns the fact that it has been driven into ghettos, replaced by the eerie optimism of Facebook status updates.

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Letter to a Dog Walking Service

Illustration by Wenting Li

Diane Mehta | Longreads | February 2018 | 21 minutes (5,195 words)

Dear REDACTED,

I’m writing to inform you that you have a terrible way with people. We hired you because you offered predictability in a hectic world. The point is that each day you have sent a different person to walk our dog. We’ve been polite about it. But it stops now. Imagine if every day you came home to a different husband or there was a weird substitute for your onion bagel. But I like variety, you might say. Well, imagine that your substitute for the onion bagel was a kishka and you were a vegetarian, or that the different husband you came home to every night smelled like a kishka, and you were a vegetarian. Consistency over kishkas is the point. You’re supposed to send a regular person on a regular walk on a regular schedule.

When I hired you, I told you about the migraines. Daily since March. I’m not sure how old you are, and whether you’ve had children, but a full-blown migraine is like childbirth in your head. Put it in dog terms, you say. Think of a ferocious, rabid dog inside you clawing to get out and you’re on all fours, crying, stuck with it, and you think there’s no kind of chew toy or meat treat in the world that can stop this.

A two-hour window for dog walking is just the edge of what I can handle. What happens if she is late? Then I will get angry. One of my migraine triggers is waiting. I have learned to avoid situations in which I am waiting, and now here I am stuck waiting for Mr. or Mrs. Kishka of whatever aptitude or variety to arrive. This is not okay for me. Neither is it okay for my new dog.
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Recovering My Fifth Sense

Illustration by Zoë van Dijk

Kavita Das | Longreads | January 2018 | 18 minutes (4,512 words)

Just two weeks before my birth in November 1974, my parents moved into their first house, a split-level ranch in Bayside, Queens. They had been in America for less than a year, having first emigrated to England from their homeland of India so that my father, a gastroenterologist, could pursue his Ph.D., and my mother, an obstetrician-gynecologist, could receive additional medical training.

While my mother was giving birth to me my father was home raking leaves, because it was fall and leaves need raking, and because fathers were not considered crucial to child birthing in Indian culture. I came into the world around midday, a glowing, healthy, baby of six pounds, seven ounces.

In the hospital, after the nurses had brought me to my mother’s bedside, she began to give me my first feeding. As soon as I started to hungrily suck on the bottle, milky formula began trickling out of my nose. She wiped it away and began again, but the formula, once again, leaked from my nostril. That’s when she suspected that, although I had been spared the perceivable deformity of a cleft lip, nestled between my plump cheeks and hidden behind my rosebud lips, was a cleft palate.

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From One Friendship, Lessons on Life, Death, AIDS, and Childlessness

Left to right: Dan, the author, and Michael. (Photo courtesy of the author)

S. Kirk Walsh | Longreads | January 2018 | 27 minutes (6,711 words)

 

I first met Dan Cronin on an early spring evening in 1993. Michael, my new boyfriend, introduced us. We were standing on the southwest corner of 12th Street and Fifth Avenue in Manhattan. A stream of cabs, city buses, and cars surged toward the illuminated marble arch of Washington Square. The changing twilight danced through the rustling, pale-green leaves of the trees that shaded the grounds of the nearby church. “I’ve heard a lot of great things about you,” Dan said to me. His smile was angelic and mischievous, his eyes, a striking slate blue. He lit a Newport cigarette, a wisp of smoke releasing from the corner of his mouth.

That night, we decided on dinner at a family-run Italian restaurant in the West Village. The three of us talked about books (J. M. Synge, E. L. Doctorow), Catholicism (the religion of our childhoods), Arthur Ashe’s recent death from AIDS, Dan and Michael’s strong allegiances to Upper West Side. It was a memorable night. As I said goodbye to them at the 14th Street subway stop, I felt a kind of certainty and contentment as if I already knew that Dan and Michael were going to be a part of my life for a long time.

Prior to that night, Michael had also told me a lot about Dan: He was a professional tenor, who had performed on Broadway and national tours around the country. He was a voracious reader of American history, passionate about all things Abraham Lincoln, Muhammad Ali, and Michael Jordan. He was religious in his daily purchasing of lottery tickets. (He always played the same numbers; the street address of his childhood home.) He was employed as a waiter at the famed Russian Tea Room. (He was the shop steward of the union, and the powerful position allowed him to work only when he felt up to it.) Having recently visited his ancestral town in County Kerry, Ireland, he told a story of encountering a man who could recite passages of Ulysses in Gaelic.

Over the past year, Dan and Michael had become close friends. They had many lively discussions about sports and politics, but their true bond centered on their experiences with recovery, addiction, pain, and abuse. “He’s a remarkable man with many talents,” Michael said when he first told me about Dan. “It’s sad because he’s HIV positive.” Shortly after his diagnosis seven years earlier, Dan started taking high doses of AZT (zidovudine, the first antiretroviral drug approved by the FDA in 1987) as a part of his treatment protocol.

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My Daughter Died, But I’m Still Mothering Her

neo8iam via Pexels

Jacqueline Dooley | Longreads | January 2018 | 20 minutes (5,067words)

In July 2016, when we got the results of my 15-year-old daughter’s CT scan, my friend Babs introduced me to a new term: “anticipatory grief.” The scan showed that tumors in Ana’s lungs were noticeably larger than they’d been three months earlier, and masses in her abdomen had multiplied. Having been through this eight years earlier with her then 16-year-old son, Killian, Babs recognized that what we were dealing with wasn’t just a bad scan. It was a turning point in Ana’s disease — the Inflammatory Myofibroblastic Tumor, a rare form of pediatric cancer, she’d been diagnosed with four years earlier.

Medicinenet.com defines anticipatory grief as “the normal mourning that occurs when a patient or family is expecting a death.” As if there was anything normal about preparing to mourn my child’s death.

I didn’t like the term. I wasn’t ready to start grieving.

Babs suggested I reach out to a local hospice organization. I recoiled at the thought. Ana looked and felt good. I was sure her oncologist would find a drug to slow her progression until some miracle of modern medicine revealed a cure. It seemed impossible that Ana would die. I had no frame of reference or spiritual foundation for the enormity of that kind of loss.

Ana’s oncologist switched her to a new medication, but made it clear that this likely would only slow things down. Although it was disappointing, we still had hope. Ana glowed with health, at least outwardly. Maybe this new treatment would work better than the others had. Maybe.

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