The Longreads Blog

The Top 5 Longreads of the Week

Below, our favorite stories of the week. Kindle users, you can also get them as a Readlist.

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When Your Kid Has a Disease No One’s Ever Heard About

The Mights couldn’t wait for the culture of scientific research to change: they had been told that Bertrand could have as little as a few months left to live. The same day that they learned about NGLY1, they began plotting ways to find more patients on their own. Several years earlier, Matt had written a blog post, called “The Illustrated Guide to a Ph.D.,” that became a worldwide phenomenon; it was eventually translated into dozens of languages, including Serbian, Urdu, and Vietnamese. The popularity of the post, combined with Matt’s rising profile among computer programmers, meant that almost anything he put online was quickly re-posted to Hacker News, the main social news site for computer scientists and entrepreneurs. He decided to use his online presence to create what he referred to as a “Google dragnet” for new patients.

For the next three weeks, Matt worked on an essay that described Bertrand’s medical history in clinical detail. Matt called the result, which was more than five thousand words long, “Hunting Down My Son’s Killer,” and on May 29, 2012, he posted it to his personal Web site. It began: “I found my son’s killer. It took three years. But we did it. I should clarify one point: my son is very much alive. Yet, my wife Cristina and I have been found responsible for his death.”

Half an hour after Matt hit “publish,” Twitter began to light up. By the end of the day, “Hunting Down My Son’s Killer” was the top story on Reddit. The next morning, an editor from Gizmodo, a tech blog owned by Gawker Media, asked Matt for permission to republish the essay. In less than twenty-four hours, the post had gone viral. The more it was shared and linked to, the higher it rose in search engines’ rankings, and the easier it would be for parents of other children to find.

In The New Yorker, Seth Mnookin reports about what one couple, Matt Might and Cristina Casanova, did when they discovered that their son had a rare condition that no doctor had ever heard about. We featured Might’s account of his family’s search to diagnose his son’s disease in 2012.

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Photo of Matt Might by: David Van Horn

Solitude, and the Contrast Between the Outside World and Our Inner Selves

There can be something enjoyable, even revelatory about that feeling of self-protection, which is why we seek out circumstances in which we can feel more acutely the contrast between the outside world and our inner selves. Woolf was fascinated by city life—by the feeling of solitude-on-display that the sidewalk encourages, and by the way that “street haunting,” as she called it, allows you to lose and then find yourself in the rhythm of urban novelty and familiarity. She was drawn to the figure of the hostess: the woman-to-be-looked-at, standing at the top of the stairs, friendly to everyone, who grows only more mysterious with her visibility. (One of the pleasures of throwing a party, Woolf showed, is that it allows you to surprise yourself: surrounded by your friends, the center of attention, you feel your separateness from the social world you have convened.) She showed how parents, friends, lovers, and spouses can become more unknowable over time, not less—there is a core to their personhood that never gives itself up. Even as they put their lives on display, she thought, artists thrive when they maintain a final redoubt of privacy—a wellspring that remains unpolluted by the world outside. “A thing there was that mattered; a thing, wreathed about with chatter, defaced, obscured in her own life, let drop every day in corruption, lies, chatter,” Clarissa thinks, at the end of “Mrs. Dalloway.” Of course, it’s the chatter—the party—that helps her know that she has something to lose in the first place.

Joshua Rothman, writing in the New Yorker about Virginia Woolf’s idea of privacy.

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Elaine Stritch: 1925-2014

Moving to my home town was a big move for me. I loved all the people I grew up with. For a kind of screwed up broad—I am a little screwed up, because I tried to get myself settled where I tried to feel happy, and the only place I did it in New York was on the stage. I was genuinely happy entertaining. I loved it. So to stop that was hard. But I discovered that I entertain every place I go. I can’t stop myself. I can’t end it. I love making people laugh or cry or do whatever they want to do. If you open your heart to somebody, it’s such a joyful feeling. But then, when I get off [stage], I forget what it was like. Where’s that feeling? And you can’t get it back. No one will ever know the joy of getting a laugh from an audience. It’s heaven.

-Elaine Stritch, in a February interview with Michael Musto. Stritch died Thursday at her home in Birmingham, Mich. She was 89.

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Photo: Allan Warren, Wikimedia Commons

What It's Like to Watch a Version of Yourself on TV

At Matter, the real-life Larry Smith talks about the other true story behind Orange Is the New Black—the one about Piper’s husband.

As the show began to come together, Jenji asked us a question: Could she call the main characters Piper and Larry? Tough choice. If the show works, it’s great to be “the real Piper.” But “the real Larry?” I wondered why they would want to use a name that peaked in popularity in the ’40s. In a rare moment of not overthinking, I gave in.

It was a much bigger decision than we realized. It’s trippy to watch an adapted version of some of the most intense, intimate moments of your life play out on TV, in some version of real time, and know millions of others have watched it as well and have formed an opinion of “Piper and Larry.” It’s one thing to see someone reading your wife’s book on the subway; quite another to be standing in line for a movie in Brooklyn and hear the guy in front of you say to his date, “That newsstand we passed looks just like the one where Larry in Orange Is the New Black bought all those papers that printed his article.” It’s like living an out-of-body experience out of someone else’s body.

It’s also surreal to be moved by your own fictional—though mostly true-to- life—marriage proposal, recited by someone else. It’s funny to at once wish I had said a few of the things Jason Biggs (who plays Larry) said to Taylor Schilling (who plays Piper) and also be annoyed the writers didn’t use some of my lines.

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The 'Serial Abuse' of Our Armed Forces

The intensification of the War for the Greater Middle East after 9/11 revealed unsuspected defects in America’s basic approach to raising its military forces. Notwithstanding the considerable virtues of our professional military, notably durability and tactical prowess, the existing system rates as a failure.

The All-Volunteer Force is like a burger from a fast-food joint: it’s cheap, filling and tastes good going down. What’s not to like? Take a closer look, however, and problems with the existing U.S. military system become apparent. It encourages political irresponsibility. It underwrites an insipid conception of citizenship. It’s undemocratic. It turns out to be exorbitantly expensive. And it doesn’t win.

Dishonesty pervades the relationship between the U.S. military and society. Rhetorically, we “support the troops.” But the support is seldom more than skin-deep.

In practice, we subject the troops we profess to care about to serial abuse. As authorities in Washington commit U.S. forces to wars that are unnecessary or ill-managed or unwinnable — or, in the martial equivalent of a trifecta, all of the above — Americans manifest something close to indifference. The bungled rollout of a health care reform program might generate public attention and even outrage. By comparison, a bungled military campaign elicits shrugs.

-Andrew J. Bacevich, in Notre Dame magazine, on the history of U.S. war in the Middle East over the past 30 years, and why there’s no end (or strategy) in sight.

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More military in the Longreads Archive

Photo: usafe, Flickr

The Value of Letting Kids Lose

At Deadspin, Drew Magary looks at America’s ‘Kid-Competition Complex’ and explains why it’s problematic:

I have a 5-year-old son who hates losing. I don’t mean this as a compliment. He BLOWS at losing. He rigs pretty much any game in the backyard in his favor, and if you call him out on him, he gives you a red card (he’s also the ref). And if you beat him (and, as it stands now, I can totally beat him at everything), he cries and cries and cries until you let him win the next game so he stops crying. I took him to a bar to watch Mexico play Holland in the World Cup and he arbitrarily cheered on Mexico. When they blew the game, he acted like a wailing widow throwing herself on a coffin.

And so I’ve had to spend a great amount of energy teaching my son to lose, to explain to him that you can play hard and play well and still have the misfortune of losing. I need to get him to accept the value of losing, which is frankly counter to how losing is portrayed in the American mainstream. Losers are shunned. Losers are ridiculed. “Loser” is Donald Trump’s favorite insult, which is just so telling. Jürgen Klinsmann publicly stated that the U.S. men’s soccer team couldn’t win the World Cup, and for that obvious assessment, he was scorned by Michael Wilbon and other assorted members of the Hot Take Collective. For Wilbon, even acknowledging the reality of losing is itself a way of losing. In his eyes, real competitors don’t anticipate loss. They delude themselves into the possibility of winning even when that’s stupid. This is why he told Klinsmann to get out of America. Americans do not think this way. Americans compete.

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Photo: Luyen Chou

The Story About Pit Bulls That Rarely Gets Written

This is a story about an American dog: my dog, Dexter. And because Dexter is a pit bull, this is also a story about the American dog, because pit bulls have changed the way Americans think about dogs in general. Reviled, pit bulls have become representative. There is no other dog that figures as often in the national narrative—no other dog as vilified on the evening news, no other dog as defended on television programs, no other dog as mythologized by both its enemies and its advocates, no other dog as discriminated against, no other dog as wantonly bred, no other dog as frequently abused, no other dog as promiscuously abandoned, no other dog as likely to end up in an animal shelter, no other dog as likely to be rescued, no other dog as likely to be killed. In a way, the pit bull has become the only American dog, because it is the only American dog that has become an American metaphor—and the only American dog that people bother to name. When a cocker spaniel bites, it does so as a member of its species; it is never anything but a dog. When a pit bull bites, it does so as a member of its breed. A pit bull is never anything but a pit bull.

-Tom Junod, in Esquire.

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More on Junod in the Longreads Archive

Photo: matthewalmonroth, Flickr

‘Cooking Was My Mother’s Principal Weapon’

Born into the permissive Sixties, raised in the disillusioned Seventies, the third of three children, I came of age in a world where few rules were trusted, few applied. Of those that did, the rules contained in my mother’s cookbooks were paramount.

The foods of my childhood were romantic. Boeuf bourguignon. Vichyssoise. Salade Niçoise. Bouillabaisse. Béarnaise. Mousseline au Chocolat. Years before I could spell these foods, I learned their names from my mother’s lips, their smells by heart. At the time I took no notice of the gustatory schizophrenia that governed our meals. The extravagant French cuisine prepared on the nights my father dined with us; the Swanson TV dinners on the nights we ate alone, we three kids and my mother, nights that came more frequently as the Sixties ebbed into the Seventies. On those nights we ate our dinners in silence and watched the Vietnam war on television, and I took a childish proprietary delight in having a dinner of my own, served in its aluminum tray, with each portion precisely fitted to its geometrical place. These dinners were heated under thin tin foil and served on plates, and we ate directly from the metal trays our meals of soft whipped potatoes, brown gravy, sliced turkey, cubed carrots and military-green peas.

Had I noticed these culinary cycles, I doubt that I would have recognized them for the strategic maneuvers they seem to me in retrospect. Precisely what my parents were warring over I’m not sure, but it seems clear to me now that in the intricate territorial maneuvers that for years defined their marriage, cooking was my mother’s principal weapon. Proof of her superiority. My father might not feel tenderness, but he would have to admire her. My mother cooked with a vengeance in those years, or perhaps I should say she cooked for revenge. In her hands, cuisine became a martial art.

From E.J. Levy’s “Mastering the Art of French Cooking,” which was featured in the 2005 edition of The Best American Essays, edited by Susan Orlean. When anyone asks me to name a favorite essay I’ve read, I often point to this one.

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Jill Abramson on Losing a Job in Public

Is it hard to say I was fired? No. I’ve said it about 20 times, and it’s not. I was in fact insistent that that be publicly clear because I was not ashamed of that. And I don’t think young women — it’s hard, I know — they should not feel stigmatized if they are fired. Especially in this economy people are fired right and left for arbitrary reasons, and there are sometimes forces beyond your control.

I did cry after reading [that] article about me in Politico. I don’t regret admitting I did. The reason I wanted to do this interview is that I think it is important to try to speak very candidly to young women. The most important advice I would still give — and it may seem crazy because I did lose this job I really loved — you have to be an authentic person. I did cry. That is my authentic first reaction. I don’t regret sharing that.

-Jill Abramson, from a forthcoming interview in Cosmopolitan.

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More on Abramson in the Longreads Archive

Photo: New Yorker, YouTube