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The Top 5 Longreads of the Week
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Below, our favorite stories of the week.
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STAT: My Daughter’s MS Diagnosis and the Question My Doctors Couldn’t Answer
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Maria Bustillos
Maria Bustillos "Nearly 24 years later and still just that crazy about my kid." Photos courtesy of the author.
Maria Bustillos | Longreads | September 2016 | 40 minutes (10,049 words)
I.
In the first days of 2014, in her senior year at Oberlin and just a few days before the winter term she’d arranged to spend in France, my daughter Carmen’s legs went numb. First her feet got all tingly, then her ankles, calves, and knees. Over three days or so, the numbness crept up to the base of her rib cage, and then stopped. But it didn’t go away—a weird sensation all in her skin, almost as if the whole lower half of her body had been anesthetized. Shingles, the internist told us—really?—okay. The acupuncturist, too, told us he’d been seeing anomalous cases of shingles cropping up in younger people. Carmen seemed to get a little better, and off she went to Paris; the tingling and numbness subsided slowly over the next several weeks, just as we’d been told they would, and the episode faded from memory. But about a year later, they came back again: Not shingles, after all.
Carmen in a hospital bed, uncharacteristically quiet and gloomy, the dark jungle of her curls against slick, plasticky polyester pillowcases. IV steroids, and more and more tests. Legs pretty numb, still. From pregnancy onward, I imagine, most parents harbor a cold little drop of inward fear, even as each day passes peaceful and undisturbed, through birth and babyhood and all the playdates and sleepovers and math tests, rock shows and summer vacations; at any moment, perhaps, from out of nowhere, comes the pounce. Here it is, then. Multiple sclerosis: I didn’t know anything about it really, beyond calamity, wheelchairs, and Annette Funicello. Instant by instant I composed my face and steeled myself as best I could for… what?
For every cliché in the world, naturally. A soul-wracked family, just like the ones you’ll see every day on the Lifetime Channel and the evening news; a brave young person, scared and in trouble; you register a fleeting hope that things will work out for them, in fact or fiction, as you flick to the next station. Now it’s your turn, but you won’t be changing the channel. Can this thing be treated? What is it? How do I discover how bad this will get? Or maybe let me just jump out this motherfucking window this minute, because I’m going to die of the panic alone. Read more…
Longreads Best of 2014: Science Stories
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Longreads We asked a few writers and editors to choose some of their favorite stories of the year in specific categories. Here, the best in science writing.
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Virginia Hughes
Science reporter and soon-to-be science editor at BuzzFeed.
The Itch Nobody Can Scratch (Will Storr, Matter)
I’ve thought about this story (an excerpt from Storr’s book, The Unpersuadables) many, many times since reading it. It’s superficially about Morgellons, a disease in which people think that they’re infected with bugs or fibers. But it’s really about the nature of disease and diagnosis, evidence and belief. It’s creepy, fascinating, and profound. The best part about it is the way Storr describes these patients and their delusions. It would be easy to make them seem stupid or crazy or worse. But Storr’s writing creates empathy and understanding. The not-insignificant downside of this piece: it makes you feel itchy. Read more…
Our Problem Might Not Be Gluten, After All
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Mark Armstrong
Mark Armstrong There is more to wheat than gluten. Wheat also contains a combination of complex carbohydrates, and the Australian team wondered if these could be responsible for the problems. Gibson and his colleagues devised a different study: they recruited a group of thirty-seven volunteers who seemed unable to digest gluten properly. This time, the researchers attempted to rule out the carbohydrates and confirm gluten as the culprit. Gibson put all the volunteers on a diet that was gluten-free and also free of a group of carbohydrates that he and his colleagues called FODMAPs, an acronym for a series of words that few people will ever remember: fermentable oligosaccharides, disaccharides, monosaccharides, and polyols. Not all carbohydrates are considered FODMAPs, but many types of foods contain them, including foods that are high in fructose, like honey, apples, mangoes, and watermelon; dairy products, like milk and ice cream; and fructans, such as garlic and onions.
Most people have no trouble digesting FODMAPs, but these carbohydrates are osmotic, which means that they pull water into the intestinal tract. That can cause abdominal pain, bloating, and diarrhea. When the carbohydrates enter the small intestine undigested, they move on to the colon, where bacteria begin to break them down. That process causes fermentation, and one product of fermentation is gas. In Gibson’s new study, when the subjects were placed on a diet free of both gluten and FODMAPs, their gastrointestinal symptoms abated. After two weeks, all of the participants reported that they felt better. Some subjects were then secretly given food that contained gluten; the symptoms did not recur. The study provided evidence that the 2011 study was wrong—or, at least, incomplete. The cause of the symptoms seemed to be FODMAPs, not gluten; no biological markers were found in the blood, feces, or urine to suggest that gluten caused any unusual metabolic response.
–Michael Specter, in The New Yorker, on the “gluten-free” craze and the science behind it.
Photo: reid-bee, Flickr
The Top 5 Longreads of the Week
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Longreads Below, our favorite stories of the week. Kindle users, you can also get them as a Readlist.
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The Science of Suppressing Traumatic Memories
Posted by Mark Armstrong
Mark Armstrong I had come to his house, in this sunny spot between Ben Gurion Airport and the Mediterranean coast, for an unlikely reason: not long ago, after decades of unwavering silence, Sigmund Schiller spoke about his Holocaust experience.
“People talk about ‘Sophie’s Choice’ as if it were a rare event,” he said. “It wasn’t. Everybody had to make Sophie’s choice—all of us. My mother left behind a four-year-old with the maid. You don’t think I was beaten and shot at? There are no violins in my story. It is the most common thing that happened.”
Nobody moved in the Schillers’ living room while the film continued. At times, Daniela hid her eyes with her hands, and so did her father. For the most part, they were immobile. On camera, she asked him if he had consciously suppressed this information.
“Yes,” he said. “You must suppress. Without suppression I wouldn’t live.”
–Michael Specter, in The New Yorker, on the neuroscience of our own memories.
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Posted by Longreads
Longreads Meet the researchers who are developing new methods for countering global warming using geoengineering. Some solutions come with great risks:
While such tactics could clearly fail, perhaps the greater concern is what might happen if they succeeded in ways nobody had envisioned. Injecting sulfur dioxide, or particles that perform a similar function, would rapidly lower the temperature of the earth, at relatively little expense—most estimates put the cost at less than ten billion dollars a year. But it would do nothing to halt ocean acidification, which threatens to destroy coral reefs and wipe out an enormous number of aquatic species. The risks of reducing the amount of sunlight that reaches the atmosphere on that scale would be as obvious—and immediate—as the benefits. If such a program were suddenly to fall apart, the earth would be subjected to extremely rapid warming, with nothing to stop it. And while such an effort would cool the globe, it might do so in ways that disrupt the behavior of the Asian and African monsoons, which provide the water that billions of people need to drink and to grow their food.
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Longreads In the 1940s, U.S. doctors led experiments that intentionally infected thousands of Guatemalans with venereal diseases. A closer look at how it happened, and who knew:
John Cutler, the young investigator who led the Guatemalan experiments, had the full backing of US health officials, including the surgeon general.
“Cutler thought that what he was doing was really important, and he wasn’t some lone gunman,” says Susan Reverby, a historian at Wellesley College in Massachusetts, whose discovery of Cutler’s unpublished reports on the experiments led to the public disclosure of the research.
“Human Experiments: First, Do Harm.” — Matthew Walter, Nature
“I miss my body when it was ferocious” The Transfiguration of Paul Curreri
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Brendan Fitzgerald
Brendan Fitzgerald Paul Curreri -- All photos by Aaron Farrington
Brendan Fitzgerald | Longreads | March 2020 | 47 minutes (12,973 words)
I had seen Paul Curreri a few times around Charlottesville — pushing a cart around the local Wegmans grocery, drinking seltzer at the brewery, holding his young daughter and wearing a brace on one hand — before I worked up the nerve to write to him.
“I’m not sure if you know I’ve been fairly sidelined for the past five years via hand and vocal problems,” he wrote back. “I shouldn’t necessarily assume you know that. Perhaps you just thought I’ve been lazy as shit.” I told him I didn’t want much of his time; I had kids of my own now, too. “Truly,” he wrote back, “there is always time.”
Over a decade, Curreri had released a body of music that should have made him one of America’s most esteemed songwriters. “Paul Curreri gives what few songwriters can,” Matt Dellinger wrote in The New Yorker in 2002. “It hits you soon and hard that you’re hearing something exquisite.” His first albums, built on country blues foundations, shook with dexterous picking and a voice that keened and yipped and roared. A few early songs functioned like artist statements, little revelations of ethos bound up in the tension between the limits of Curreri’s body and the demands of his music. “If your work is shouting, deep-breasted, from sun-up to sundown, take care,” he sang on 2003’s Songs for Devon Sproule, named for the musician he’d marry a few years later. “In time, a shouter you’ll become.”
For years, Curreri’s work had shouted, and so he became a shouter of singular beauty. Then, he went quiet — slowly, at first, then all of a sudden.
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