Search Results for: Medium

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…

How to Write a Memoir While Grieving

Illustration by Katie Kosma

Nicole Chung | Longreads | March 2018 | 11 minutes (2,845 words)

I am writing a book my father will never see. Not in its entirety, not out in the world. He got through about half of my first draft, my mother said, or maybe a little bit more, sometimes using a magnifying glass to read the manuscript I’d sent in 12-point double-spaced Times. When I heard this, I berated myself — I should have thought of that; I should have sent a larger-print version. “Honey, it wouldn’t have mattered,” Mom said. “He had to use the magnifying glass for all his reading, even the bigger type.”

Why didn’t I know that? Because I was far away, across the country. Because he didn’t read books on the too-rare occasions when we were together; he was focused on spending time with me. Because, while I asked about his health all the time, I never asked, specifically, how does he read these days? One more thing I hadn’t known about my father. One more thing to reproach myself for.

He did read part of my book. I think about that every day. He and my mom would sometimes read it aloud, together, chapter by chapter, working their way through it in the evenings after she got home from work. When my dad died suddenly, six days into the new year, they were still several chapters from the end.

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Lying Down in the Dirt: An Interview with Denis Johnson

East Fork of the Salmon River, Idaho (Eric Zamora/VWPics via AP Images)

Janet Steen | Longreads | February 2018 | 13 minutes (3,523 words)

In 2002, while I was the literary editor at Details magazine, I interviewed Denis Johnson on the occasion of the tenth anniversary of what is perhaps still his most famous book, Jesus’ Son. When he died last year, at the age of 67, I wondered if I could locate the cassette I’d recorded the interview on all those years ago.

Eventually it surfaced, on a dusty ancient Sony type-1 normal bias, and there, suddenly, was Denis — before books like Train Dreams and Tree of Smoke, and before his last recent posthumous book of stories The Largesse of the Sea Maiden, which, as it turns out, would be his only other collection of stories. On the recording he is soft-spoken and easy and open, but there is still a hint of the jangly “Fuckhead” he drew on for the stories, a guy who finds it “painful to be amongst humans,” who made the rest of us feel less ashamed for finding it so hard.

(This interview has been greatly edited for clarity, but the full audio is available below. -Ed.)

* * *

Janet Steen: Have you reread any of the stories in Jesus’ Son lately?

Denis Johnson: Not really lately. But it happens I’m very familiar with the book. For a couple of years before it was published, and then several years after, when I would give a reading, I would read one of those stories, or two of them. I’d look around for something I hadn’t read out loud in a while in that book, and that was kind of my routine. I ended up reading all of the stories out loud several times. Three, four readings a year. I became really familiar with the sound of the stories.

I haven’t looked at them lately though. I never really got tired of reading them out loud. I just quit because I started to feel like I was beating a dead horse, and I felt like I should read something a little more recent.

JS: What did you feel towards them when you read them, even if you would sit down and read them by yourself?

DJ: Well, I don’t know. I rarely read them to myself, but reading them out loud I really enjoyed the humor in them. People would almost always come up to me afterwards and say, “I didn’t realize those were funny. I thought those stories were just sad.” When you read them out loud, people laugh a lot, because the characters are humorous. It’s just their situations are generally very, very bleak.

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Guantánamo, Forever

Guantanamo guards keep watch over detainees inside a common area at Camp 6 high-security detention facility at Guantanamo Bay U.S. Naval Base, Cuba. (AP Photo/Brennan Linsley)

Amos Barshad | The Marshall Project & Longreads | February 2018 | 16 minutes (4,100 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.

The message came in on a spring day via the undisclosed U.S. government facility that approves all correspondence out of the military prison in Guantánamo Bay. It was a request for representation from Haroon Gul, a detainee, to Shelby Sullivan-Bennis, an attorney. Gul had never had a lawyer. He was one of the last men in Guantánamo without one.

Now, in 2016, his request was urgent. After nearly a decade of nothing, he was being given the chance to explain himself. It would happen through the Periodic Review Board, an administrative body that considers whether Guantánamo prisoners who have not been charged should be transferred home or to another country. A board representative wrote Sullivan-Bennis an email explaining that Gul, also identified as detainee number ISN 3148, “has requested in writing that you assist him with … proceedings before the PRB, at no cost to the Government.” When the email arrived, Gul’s first hearing was weeks away.

Guantánamo lawyers are famously overworked. At the time, Sullivan-Bennis was juggling five other clients. She and her coworkers at the human rights organization Reprieve asked themselves: How can we possibly handle another one? “And then everyone was like, ‘Let’s just try,’” Sullivan-Bennis recalled. “Because otherwise he’ll be alone.’”

She typed Gul a brief note saying that she’d take his case and that she’d come see him soon. She asked if he wanted anything from Guantánamo’s all-purpose department store, the Navy Exchange.

“Dear Honorable Miss Shelby Sullivan Bennis,” he wrote back in sloping, cursive handwriting, “I have no words to express my feeling of gratitude, appreciation and Thanks for your timly legal and moral help in my PRB hearing. I was in a helpless and hopeless state of my mind in my legal affairs you gave me emotional psycholgcal help.”

A few weeks later, they met for the first time in a windowless cement cellblock on prison grounds. Gul sat across a plastic-top table from Sullivan-Bennis in a loose-fitting, tan-colored T-shirt, with his ankle shackled to a metal ring secured to the floor. He’d been detained in Guantánamo since 2007, shortly after Afghan National Directorate of Security forces burst with guns into the rural guesthouse where he was staying outside Jalalabad and threw a bag over his head.

For the first time, he told his story to a lawyer. He was in his early 30s, like her. He had a wife, Halimah, and a 10-year-old daughter, Maryam, living in a refugee camp in Pakistan. Gul himself grew up in a Pakistani camp after violence forced his family to flee his home in Afghanistan. Despite harsh camp conditions, he’d earned an economics degree at Hayatabad Science University. He spoke four languages, including Pashto and Dari. While at Guantánamo he’d learned a fifth, English.

And like nearly every other detainee held at Guantánamo since 9/11, Gul had never been charged with a crime. The U.S. government was justifying his detainment under the law of war. In a secret government dossier on Gul released by Wikileaks, Gul (also known as Haroon al-Afghani) is described as “high risk” and of “high intelligence value.” The dossier alleges that he was an explosives expert and a high-ranking military strategist who had executed attacks on the Northern Alliance on behalf of Hezb-e Islami Gulbuddin, or HIG, a party affiliated with al Qaeda in the 2000s. U.S. intel also indicates that, in 2001, Gul attempted to help Osama bin Laden escape from Tora Bora.

Gul was too polite to put it this way, but he was effectively saying that it was all, all of it, bullshit. His affiliation with HIG was the same as that of millions of other Afghans: The group ran the refugee camps he needed to survive. He said he supported his family by selling small goods, like used books and jars of honey. He said the reason he was in that guesthouse that night was because he was on the road, selling, trying to scrape together some money. He said the Afghans had grabbed the wrong person.

The government’s allegations were built on secret interrogations and unidentified sources named things like IZ-10026. Sullivan-Bennis came to believe that Gul was innocent. It had happened before: An alleged al Qaeda agent named Mustafa al-Aziz al-Shamiri was detained for 13 years before his release; during his PRB hearing, the government admitted it may have had the wrong man. Read more…

My Abuser’s Gender Made Me Doubt My Experience

Caroline Catlin | Longreads | February 2018 | 11 minutes (2,695 words)

Here are some things I know: It happened in September of my junior year at college. It happened on a Friday. I left the party and went home with a well-liked acquaintance. The next morning I met a friend for coffee. She laughed, and said she was proud of me for being so “wild.” As we spoke, another friend walked into the cafe, said I looked “off,” and asked if I was okay. I began to cry. I lay in the bed of a third friend while she researched the process of reporting rape. As I waited, I curled my body into the shape of a comma. There was a circular bruise between my legs. There was blood in my underwear. I saw a therapist, just once. She offered to bring me to the hospital. I refused her offer. Instead, I took pictures of the marks on my body and hid them in a folder on my desktop named “other.” Just in case, I told myself.

***

The summer before I turned 13, I spent most of my time alone in the woods. Something was wrong, but I wasn’t sure what it was. I knew not to talk about this with anyone, knew that the adults would minimize or escalate what was happening inside of me. Besides, even if I wanted to talk about it, what would I say? I convinced myself that if I followed certain patterns, I would feel okay again. Three taps on one tree, two taps on another. Despite my efforts, by the time my birthday rolled around in October, I was becoming unhinged. My parents, loving and generous, had gifted me a birthday trip — a once in a lifetime opportunity to go with my mom to Florida to see dolphins. For the big unveiling, I unwrapped a small wooden box engraved with a dolphin on its front. That night, I took the box to bed with me, cradling it as I cried. What was wrong with me? Why couldn’t this — even this — make me happy?


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The Top 5 Longreads of the Week

This week, we’re sharing stories from Edith Zimmerman, Eli Saslow, William Brennan, Meredith Haggerty, and Kelly Conaboy.

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Grief is a Jumble Word

Ken Otterbourg | Longreads | February 2018 | 14 minutes (2,710 words)

 

I woke up sad today. I was sad when I got out of bed, and I was sad when I went downstairs to get the tiny can of wet cat food for the four cats. I was sad when I nearly stumbled on the bottom step of the first landing in the basement. I was sad as I thought about what would happen if I fell and lay in the basement for several hours with a broken leg or a concussion while the cats ate the cat food and licked my face and the dog wondered where I was after he had heard the pop top on the cat food can that signaled it was soon to be his turn. But I did not fall. So, I was sad when I let Bailey out of his crate and watched him scratch his face against the carpet while I got his leash.

I was sad when we walked outside as the sun was coming up in the east and I could still make out Venus in a morning sky that was the color of hope flecked with a few clouds off in the distance. Venus helped but not enough. I was sad when we walked down Fourth Street. I was sad crossing Broad Street and watching the morning traffic build and all the people on their cell phones even this early. I was sad after Bailey took his shit in the monkey grass even though it was a good shit that indicated the virus that nearly killed him two weeks ago and caused him to shit blood that was the color of raspberry juice was gone and that the $550 I had spent during four hours at the emergency vet between 10 p.m. and 2 a.m. was definitely money well spent and necessary.

After we got home, I was sad scooping out his dog food into the bowl and giving him the remains of the cat food that stuck to the tiny can. The dog was happy and wagged his tail and swirled in delight. I emptied the dishwasher, and that didn’t make me happy or cause me to swirl in delight. It never does. I was sad drinking my coffee, which usually made me happy because it made me think of how much JoAnne loved coffee and how when I met her she used to drink a whole pot of it every day, so much that I wondered how she got any work done because she must have kept having to pee. But now things like that make me sad, and I would stop drinking coffee myself but I don’t think it would matter. I was sad eating my English muffin and banana and reading the newspaper and doing the Jumble and wondering if there is a list somewhere of all the five- and six-letter words that can only be arranged in one correct way and are therefore Jumble suitable. Those are the sorts of things that I think about, and many times a little nerdish insight or aha moment of that type is enough to make me smile. But they can also make me sad because there is nobody to share that insight with except the dog and the four cats and they don’t care, and it’s not the type of thing that you can save until later when you speak to an actual person because you would have to figure out how to slip it into a conversation so that it sounded natural and it never does. It’s the sort of utterance best delivered with no preamble across a kitchen table to the woman who loves you in spite of these tendencies and maybe even a little because of them.

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How Black Panther Asks Us to Examine Who We Are To One Another

Marvel Studios

Rahawa Haile | Longreads | February 2018 | 12 minutes (3,078 words)

(Spoiler alert! This essay contains numerous spoilers about the film Black Panther.)

By the time I sat down to watch Ryan Coogler’s Black Panther, a film about a thriving, fictional African country that has never been colonized, 12 hours had passed since the prime minister of Ethiopia resigned following years of protest and civil unrest. It would be another 12 hours before the country declared a state of emergency and enforced martial law, as the battle for succession began. Ethiopia has appeared in many conversations about Black Panther since the film’s release, despite an obvious emphasis on Wakanda, the Black Panther’s kingdom, being free of outside influences — and finances.

While interviews with Coogler reveal he based Wakanda on Lesotho, a small country surrounded on all sides by South Africa, it has become clear that most discussions about the film share a similar geography; its borders are dimensional rather than physical, existing in two universes at once. How does one simultaneously argue the joys of recognizing the Pan-African signifiers within Wakanda, as experienced by Africans watching the film, and the limits of Pan-Africanism in practice, as experienced by a diaspora longing for Africa? The beauty and tragedy of Wakanda, as well as our discourse, is that it exists in an intertidal zone: not always submerged in the fictional, as it owes much of its aesthetic to the Africa we know, but not entirely real either, as no such country exists on the African continent. The porosity and width of that border complicates an already complicated task, shedding light on the infinite points of reference possible for this film that go beyond subjective readings.
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We’ve Always Hated Girls Online: A Wayback Machine Investigation

Illustration by Katie Kosma

Julianne Aguilar | Longreads | February 2018 | 14 minutes (2,894 words)

Once upon a time, in 1999, when the internet was small, when it came through your phone and not just on your phone, when the first browser war had not yet been won, when you had to teach yourself a few lines of code if you wanted to exist online, when the idea of broadcasting your real name for anyone to see was unthinkable — in those early days, before Twitter revolutions, before Facebook Live homicides, when the internet was small and most people didn’t understand it, and only the nerds hung out there even then, it was already happening.

Even then, people hated girls on the internet.

* * *

Eighteen years went by before I thought about Sara again.

I’d just finished a project in which I had tracked down a fanfiction author I’d loved in the early 2000s. Jami had been relatively easy to find: It turns out that if you’d had a sprawling internet presence as a child, you probably have one now, under new names, on new websites. Not only had I found Jami, but I learned that she is now a successful, Hugo-nominated author. I was deliriously happy. She’d made it — this girl who’d written fanfiction had achieved the wildest dream and turned that talent into an actual writing career. I wanted the same for Sara, a tangible success that followed minor internet celebrity.

In 1999 Sara had a website hosted on Expage, and so did I. I didn’t know her: I was attracted to Sara’s website because it was incredibly well-designed for 1999, and because Sara, like me, was a middle school girl who loved the internet. Her “About Me” page listed her age as 12, same as me. I don’t remember how I found her site but I do remember that it’s what initially sparked my interest in web design and the internet in general.

Between 1999 and now, I would occasionally think of Sara. I’d been addicted to her website. In the design anarchy of Web 1.0, Sara had an eye. She had a sense. Her website looked like few others at the time, in that it looked good, like something you couldn’t make yourself. She knew how to hold an audience: she updated frequently, changing her layouts often and offered the code for free. Because of this, her website was hugely popular. Many years later I’d see her name mentioned in a discussion about early internet celebrities. I was there, I thought. I was one of her biggest fans.

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The Hotel of Multiple Realities

Emily Carter Roiphe | Longreads | February 2018 | 14 minutes (3,466 words)

The Waiting Room

I was leaning on my husband’s shoulder one day as we were walking through a lobby that seemed a bit crowded for the part of New Mexico where we lived. On the soundtrack there was some desultory chatter and the hum of fluorescent lights.

“Where are we NOW?” I asked in exasperation.

“You had a brain aneurysm, sweetheart, you had brain surgery.”

“Is the surgery over?” I asked.

“Yes, for a whole day,” he said.

“So, we can go now?”

We’d been planning to go camping in Monument Valley, and I didn’t want to complicate our schedule. I’d had something wrong, but they fixed it, I felt fine, could we please get on with it? Then I saw his face. Usually, my husband is pretty cocky in public, thinking that he has me, and I am so wonderful, that he wants to make sure people notice, so he keeps up a performative patter of flirtatious banter about how brilliant, sexy, infuriating, and baffling I am. It’s his routine. There was something about his tone of voice now, that made me turn to look at his face; it was ashen. He looked terrified.

“What?” I said. “I feel fine. There’s nothing wrong with me anymore. I want to go camping like you promised.”

His eyes filled and he said, “Let’s go back to your room.”

First I thought, I have to do whatever, say whatever, be whatever it takes to get that look off his face, it’s making a bouquet of broken glass bloom in the dark place behind my ribs.

Then I thought, Room? What room? Are we in a hotel?

Then I realized I wasn’t walking, but perhaps, sitting and floating along. How was this possible, I wondered analytically. Am I walking or riding, standing up or sitting, falling down or getting to my feet? I wasn’t alarmed by these questions but I knew one thing instinctively: keep those questions to yourself, tell no one you have questions, or you can forget about that camping trip. I was very focused on the idea of going camping, a tent, all the stars in the wide open sky out there.
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