Search Results for: cancer

A Woman’s Work: The Outside Story

All artwork by Carolita Johnson

Carolita Johnson | Longreads | January 2019 | 23 minutes (5,775 words)

When I freelanced as a “fit model” in the early aughts (the unglamorous kind of modeling that helps patternmakers adjust their patterns to fit humans correctly) I signed a contract with my agency that legally bound me to “maintain” my “appearance” while they represented me. My skin, all my visible hair (on my head, my eyebrows, my legs, armpits, and face), as well as my weight and several key body measurements all fell under this rubric.

There is nothing unreasonable about this: the main part of the job, besides the obvious — trying clothing on for patternmakers to see if there’s anything in an item that needs correcting, to avoid producing thousands of flawed garments — is to make sure your body is always the same so that a designer can produce clothing that is a consistent fit. The unspoken truth is that even though it’s technically only about measurements, it wouldn’t do to show up without a minimum of good hair and makeup, looking as attractive as you possibly can with whatever looks you pulled in the Lotto of good looks. This goes for all size categories, from junior to plus size.

Accordingly, my accountant and I came up with a deductible category we called “maintenance” — well, I came up with it and she translated it into the IRS-accepted language — and under this category I placed gym membership expenses, haircuts (and eventual hair color as I aged, because my gray hairs upset some designers even if their clothes still fit me perfectly), mani-pedis, and occasional waxing for lingerie and swimwear jobs. I might even have been able to get Botox deducted if I’d kept doing the job long enough. I left it to my accountant to decide what I could legally include.

For context, just because most people are curious about the job description, the ideal fit model has a body that isn’t extraordinary in any way. I was a size 6/junior medium, a size for which there’s a relatively small market, so I didn’t work 9 to 5 like a size 10 or a size 18W would have. This was what made the job perfect for a cartoonist/writer like me.

It was extremely enjoyable to be able to deduct these expenses for that relatively brief period of my life as a woman. It never escaped my ironic notice that with few exceptions, most women feel contractually bound to maintain their appearance in all the same ways I had to as a pro, while paying for it all on a sliding scale from “religiously” to “happily” to “begrudgingly,” usually depending on the amount of social and financial power they are born into or acquire through hard work or marriage.


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Losing the Plot

Illustration by Giselle Potter

Sari Botton | Longreads | December 2018 | 23 minutes (5,667 words)

When I graduate from college in May of 1987, I receive a call from the Sephardic Brotherhood, an organization of which my father is a lifelong member. After congratulating me on this milestone, the man on the phone suggests I begin planning for another bigger one down the road: Would I like to be buried in their section of a Jewish cemetery in New Jersey? If I sign up now, I can lock into their special rate of just $90 per year.

I’m only 22 at the time, but I’ve just put myself through four years of college by working and scrimping and saving and worrying, and damn if I don’t recognize a bargain when I hear it — not to mention an opportunity to gain a sense of control over something. I mail off a check and then go about the business of hunting for my first real job in journalism; beginning my adult life while responsibly covering my bases for the end of it.

~

Two years later I marry for the first time, and the Sephardic Brotherhood calls again. Would I like to have my husband — he’s 25 — buried beside me?

“Hang on,” I say to the man on the other end. “Honey?? Do you want to be buried with me in the Sephardic part of a Jewish cemetery in New Jersey? It’s $90 a year.”

“I don’t know,” my husband shouts from another room in our small apartment. “Can we think about it?”

“I’ll get back to you,” I tell the man.

That weekend, at dinner with my in-laws, we inform them of the wonderful opportunity before us. “What?!” my mother-in-law shrieks. “But we’re already paying for plots for you — and your children — with the Shpitzernitzer* Society!”

(*In America from the late 19th to the early 20th Century, European Jewish immigrants formed hundreds of groups like the Shpitzernitzer Society and the Sephardic Brotherhood. Originally these societies served multiple purposes — helping members find jobs, learn English, and navigate immigration issues and assorted other legal matters. Many also became discount burial plot brokers.)

It’s news to us that our corpses and those of our theoretical future children are already spoken for, but we aren’t about to argue over it. On Monday I call the Brotherhood and cancel my burial plan. They issue a full refund.

~

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Longreads Best of 2018: Essays

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

Aram Mrjoian
A writer, editor, instructor, and PhD student at Florida State University.

I’m Not Black, I’m Kanye (Ta-Nehisi Coates, the Atlantic)

This fall, I taught my freshman composition classes through a pop culture lens. Many of my students had been indoctrinated with the false promises of the five-paragraph essay and began the year with the certainty first-person point of view had no place in professional or academic writing. After I assigned this personal essay by Ta-Nehisi Coates during week one, most, if not all, of them changed their minds. Coates dissects the celebrity of Kanye West by interweaving personal narrative, meticulous research, and deft cultural and political commentary. It’s a remarkable model for what the personal essay can accomplish. How Coates ties the personal to the societal to the universal is hard to match. Coates’s ease in presenting West’s cross-generational relevance also presented an important point of connection between my students and me. Regardless of the age gap, we had all grown up on Kanye’s music. Our mutual familiarity opened up an important conversation about the divide between art and the artist, as well as the sticky social, cultural, and political complexities of fame. Throughout the semester, I found my students returning to this piece. It became a common point of reference. Certainly this essay was a pleasure to teach, but it also had much to teach me, and for that I am grateful.
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Who Really Gets to Make the Rules?

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In this poignant personal essay at Barrelhouse, Berry Grass examines the barriers we build around our true selves and the ones that others erect for us.

I used to be literally afraid to wear the clothing I loved the most. I looked at every shirt or pair of sneakers as if it had hit points, like in a video game. Each time I wore a piece I could practically see that item’s hit points drop. I was afraid of deterioration, afraid of losing this thing I treasured. I could never get myself to understand that if lock the item away, refuse its use, that I’ve already lost it.

I’ve come to see the ritual power of memory in objects. I maybe knew this power all along but denied it. Internalized something or other. I scribble notes on old notepads from Grandpa Carver’s workplace, Mission Clay Pipes. I kept a few of my Grandma & Grandpa Grass’ salt and pepper shakers from being sold in auction.

I listen to pagan black metal bands and Eastern Orthodox liturgical black metal bands and I light candles and I palm my mom’s turquoise bracelet. I’ve been wearing turquoise socks and I’ve installed a ring of turquoise gems in my pierced septum, to honor my mother. In the interest of full disclosure, this is the real reason I haven’t been writing lately: my mom passed away in summer 2016 from breast cancer that had metastasized to her lungs. She knew me. She did. And this is such cliché – perfectly rendered for the Hallmark Christmas ornaments my mom collected – but her passing, everyone’s passing, trvly helped me to realize that life is short/live how you want to live/live laugh love/etc. I watch this candle melt down, making itself gone. I fill grandpa’s notepads with ritual writing, knowing one day there will be no more notepads. I wear the clothes I love instead of saving them for some never to come day of open gates. I learn to harmonize memory and loss.

Also, I’ve been taking hormones. I’m medically transitioning. I’ve known for decades that I wanted a certain kind of body and that I wanted to be read a certain way. I just never let myself think I deserved to have it. The queer gatekeepers in my life wanted me to be a woman, which shut me off from realizing I kind of am one. The Metalheads wanted me to wear denim, a battle jacket some of them called it, and I resisted because I wasn’t them. But they were wrong about the trvth. And I was wrong to think I wasn’t in a battle. Because my body is not fixed in place. This denim jacket fades & wears & the patches accrue & nothing is being preserved here. I am not an archive. I am authentically alive. I can be a trans woman from the rural Midwest, and I can wear this denim jacket, and even in doing so I can still, in the words of Philadelphia poet Elizabeth Baber, “fuck the gatekeeper AND the gate.” I can stitch together the only kind of authenticity that matters: rivets and selvedge and frayed fabric. The tangible. The woven.

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“I know I believe in the power of lining up little hopes”

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As a series of strokes robbed Michael Graff‘s dad of his mobility and his mental faculties, Graff looks at what it means to hope and what it means to love, finding them in things that are common and simple, in the clarity of a beautiful lyric, the call of a whip-poor-will, and a last loving embrace.

It’s easy to become bored with common things—a four-lane highway, or a daily schedule at the nursing home, or a type of bird or music. But maybe these days we make too much of what awes us or infuriates us, and too little of the regular life in the middle. What’s common only became common, after all, because it adapted and learned to fit in. A cliché was once original. Country music was once meaningful. Walking was once easy. A common robin once saved Jesus.

“Look,” he said. He pointed at a man standing near the door. “It’s Uncle George.”

Uncle George, who’d raised him, died in 1995, sitting alone in a chair on his back porch, his hand on the pistol he used to take the cancer pain away. Now Uncle George is the latest person to visit my father, a dying man who doesn’t believe in the afterlife. In the past two months, he’s told me he’s welcomed everyone from his mother to his deceased brothers to an ex-girlfriend named Kathy, whom he had to break up with in the 1960s because, as he put it, “You can’t treat a boat right and have a girlfriend, too.” I guess when you’re stuck in a wheelchair and can’t go where you want, people come see you, one way or another.

I put my hand on my dad’s arm and said, “Well, hell, it is Uncle George. What’s he doing here?”

“I don’t know,” my father said.

Kenny and I had gone to visit Dad around dinnertime. Dad ate most of his popcorn shrimp and tapioca pudding while news of flooding played on the television. Then he looked down and wiped his nose.

“I’m not getting up anymore,” he said, his eyes filled up with water. “I know that now.”

The moment of clarity startled us. He grabbed each of our hands and asked us to hug him goodbye. We pulled his head to our chests and asked if he wanted us to call the nurses to transfer him to bed.

“No,” he said, “I’d rather stay here and hang out with you guys.”

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The Top 5 Longreads of the Week

Photo courtesy Peter DeMarco

This week, we’re sharing stories from Peter DeMarco, Tiffany Kary and Christopher Cannon, Rebecca Solnit, Will Bostwick, and Rosecrans Baldwin.

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Partners in Crime: The Life, Loves & Nuyorican Noir of Jerry Rodriguez

Photo courtesy the author / Kensington Publishing / Photo illustration by Katie Kosma

Michael A. Gonzales | Longreads | November 2018 | 19 minutes (5,320 words)

It was the third week in August 2004 when my best friend of 23 years, the screenwriter, playwright, and noir author Jerry Rodriguez, called me to blow off steam. Although he never told me the reasons, he and his girlfriend were breaking up. She was an attractive light-skinned woman from the West Coast, a respected editor, music critic, and novelist with hair that belonged in a shampoo commercial and a Colgate smile. A moody Cancerian who proudly represented “The Bay,” she’d known Tupac personally and could recite the lyrics to Too Short songs. Jerry was sick with cancer off and on throughout their three-year relationship and was still ill when his girlfriend decided it was over.

Diagnosed on Good Friday 2001, a few weeks after noticing a swelling on the top of his right foot, the disease steadily progressed. “She said I have to be gone by Labor Day,” Jerry sighed. “I’ve already started packing.” I sucked my teeth. “Well, that still gives you a few weeks to figure it out,” I answered, trying to sound reassuring. “It’ll be cool, man, don’t worry about it. I’ll come by and help you tomorrow.”

“Thanks, man.” Jerry’s voice was deep and serious. A lover of Sinatra, he sometimes carried himself in that stoic Frankie way. He’d watched a lot of tough guy movies with Bogart, Cagney, Lancaster, Widmark, and Mitchum as a kid. In the living room sitting next to his dad, he became a lover of film dialogue that he could recite verbatim.

That phone call came a week after Jerry turned 42. Born under the sign of Leo, he was a natural leader who usually had a big roar, but not that evening. I came over the next day while his now ex-girlfriend was at the gym. There were white moving boxes scattered throughout the beautifully decorated apartment. Outside, it was Hades hot, but the space was comfortably chilled by an air conditioner. Theirs was a dwelling I knew well, having been over for dinner parties, Sunday nights watching The Sopranos, Monday evenings viewing 24, and dog-sitting when they were out of town. Next to the front door was a long, wide cage containing Jerry’s furry white ferret Bandit. I could smell the Café Bustelo brewing.

Brooklyn Hospital was across the street, and the sounds of sirens were constant. Jerry would usually be talking about some new project or telling me about the folks from his day job at a Bronx drug clinic, but that day he was church-mouse quiet. Glancing at him, I sipped the strong coffee and placed familiar books in a box. I knew exactly what was coming next. After a few false starts, he blurted, “Look, if I can’t find a place right away, can I come stay with you for a little while?” I looked at him and smiled, knowing that in New York City, apartment-hunting-time “a little while” could mean anything from six months to six years.

For the previous few years, since my girlfriend Lesley passed away suddenly, I’d lived alone in Crown Heights. The last thing I wanted to do was share space with anyone. Still, how could I say no? He’d always been there for me, especially after Lesley’s brain aneurysm. The afternoon of her funeral, after everyone was gone, Jerry and I stood together in the empty New Jersey graveyard as my mind tried to process my plight. I was afraid to go home and face the empty Chelsea apartment Lesley and I shared, and Jerry understood my dilemma. “Let’s go to the movies and see The Iron Giant,” he said casually after we’d slipped into the limo back to Manhattan. I smiled for the first time since claiming her body at St. Vincent’s Hospital. For the next two weeks, he visited me every day after work.

All of that came back to me as I contemplated his question about moving in. “Of course, you can stay with me,” I answered, “but is the ferret coming too?” Then it was Jerry’s turn to smile.
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The Minefield of Facebook Support Groups

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As Sarah Zhang reports at The Atlantic, “People are sharing their deepest secrets on Facebook” in a myriad number of support groups for things like marital infidelity, learning that you do not share DNA with your parents, as well as for those suffering from diseases like cancer. Given Facebook’s lousy reputation for maintaining user privacy and for managing bad actors on the platform, does the social network have any idea of what their responsibilities are with regard to protecting vulnerable users from exploitation by trolls and manipulators?

It was Christopher’s therapist who suggested he look for help online. His wife had cheated on him, and he had been struggling since their divorce, but the $25 copays were adding up. His therapist proposed an online support group—free, discreet, available 24/7.

So he went, naturally, to Facebook, where a search turned up multiple private groups for people dealing with a partner’s infidelity. (Christopher had divorced his wife after finding out that their daughter was not his biological child. When I interviewed him, he asked that we withhold his real name.) From there, he got invitations to other support groups on Facebook, more targeted and even more specific: a group for families dealing with misattributed paternity, a group for children learning the same from DNA tests.

Anyone can start a Facebook group—including people trying to profit off one. While many founders of support groups are people simply trying to find others like themselves, some have used the groups as extensions of their business. In November 2017, The Verge investigated a prominent group called Affected by Addiction, whose founder was even invited to speak at Facebook’s first Communities Summit earlier that year. The founder, it turns out, was also a marketer for treatment centers that mined the group for potential patients, according to The Verge. The ties had not been disclosed.

When Facebook announced its decision to emphasize groups in 2017, the company also changed its mission statement. “It’s not enough to simply connect the world; we must also work to bring the world closer together,” Zuckerberg wrote. The change came after its attempt to connect the world ended up spreading fake news with sometimes disastrous consequences. Facebook had failed to understand the machine it built.

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Help Us Fund More Original Essays (and Great Art to Go with Them)

It’s that time of year again, when for two weeks, my Twitter feed reads like a public radio fund-drive. That’s right, it’s Longreads’ annual member drive.

We’re working hard right now to raise $50,000 for our original story fund by Sunday, November 4th — a number that turns into $200,000 when you consider that WordPress.com matches every dollar contributed times three. We need your help to achieve this goal — to be able to fund more original stories.

At Longreads we pride ourselves on paying contributors fairly. The money we raise during our member drive is used to pay writers, editors, art directors, fact-checkers, copyeditors, illustrators, photographers, transcribers, translators and others who help us publish original pieces throughout the year.

It’s used to fund not only ground-breaking journalism — for instance Leah Sottile’s article and podcast series, Bundyville, a collaboration with Oregon Public Broadcasting — but also personal essays, which we’ve been publishing more of than ever before.

As Longreads’ Essays Editor — and a reader — I feel strongly that personal narratives have never been more important than they are now, when the world needs more awareness of, and empathy for, people’s different experiences. Publishing personal essays allows us to amplify diverse voices, and also to give chances to new writers who are just starting out. I believe personal essays can be as effective as hard reporting in conveying important ideas, and perhaps even more so in terms of opening people’s hearts and minds.

I consider myself incredibly fortunate to get to work at a publication that recognizes the value of personal essays, pays writers fairly for them, and makes room in its editorial calendar for two or more of them each week.

Becoming a member — or making a one-time donation whether or not you already are a member — helps us to keep publishing a broad mix of essays from a wide variety of writers.

It’s impossible to choose my favorite particular essays that we’ve published, but in the interest of persuading you to contribute, I’d like to point to a few that have made me especially proud to have the opportunity to do this work, and to be part of the incredible Longreads team. Please notice, too, the art that accompanies these pieces — original illustrations by various artists, and collages by our art director, Katie Kosma. Member funding helps pay for these, too. Read more…

The Hospital Where

The Temptation of St. Anthony the Great. Jacques Callot, 17th century. Corbis Historical.

Nana Kwame Adjei-Brenyah | A short story from the collection Friday Black | Mariner | October 2018 | 20 minutes (5,385 words)

 

“I think I will go to the hospital. My arm is paining me.” My father’s voice. I heard him from some shallow corner of a quiet, hateful sleep. I imagined waking up somewhere different. I opened my eyes and was not somewhere different. I had no command over this place or the people in it. And yet, for the first time in more than three weeks, I felt the mark of the Twelve-tongued God, an X followed by two vertical slashes, burning on my back. My muse, my power, was awake again.

“What?” I asked.

“Can you drive?” my father asked.

“Okay,” I said. I got ready. My father sat on a white plastic chair in the kitchen near the microwave and the hot plate. The only ways we had to cook. Beneath his leather sandals was a thin puddle of water that had leaked, as it did every day, from the shower in the adjacent bathroom. It was a basement. Dark mold had to be attacked with bleach regularly. But it never died. I hated this place we lived in and had for a very long time. My father scooped oatmeal into a bowl.

“Arm pain can be linked to other problems,” he said. I tried very carefully to tie my shoes. “Better for you to drive.” This was all long before we knew of the cancer nesting in his bones.

“You’ll be fine,” I said.

“I know, but just in case,” he finished through a mouthful of oatmeal. While I waited for him to eat, I grabbed the latest issue of a small journal of stories and poems called Rabid Bird and one of my notebooks. The Twelve-tongued God beckoned in the form of the heat I felt on my back, and while I waited for my father to finish his oatmeal, I tried, finally, to write. I scribbled and felt the free feeling of fire in my bones. Transported into a world where I had command and anything was possible. Read more…