Search Results for: Medicine

STAT: My Daughter’s MS Diagnosis and the Question My Doctors Couldn’t Answer

"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…

Cyberchondria: D.I.Y. Diagnosis in Overdrive

Illustration by: Ari Saperstein

Barry Newman | Longreads | August 2016 | 11 minutes (2,698 words)

 

My headache arrived just after April Fools’ Day, moving into orbit around my right eye, with side trips to the back of my neck. It was mild as headaches go, but persistent, there at bedtime, still there when I woke up. The previous autumn I’d had a cataract replaced by a wafer of plastic. Now I was in the eye surgeon’s exam chair for my six-month follow-up; this headache was three-weeks old.

Since the operation, I told the surgeon, my eyes seemed to be working to form a single image. “A lack of coordination,” I said. And now my head hurt. She pressed a lacquered fingernail to my forehead. “The headache is here, centered above the brow?” It was. “Maybe it’s from strain.”

“I assume it’s an aneurysm,” I joked. The surgeon said, “It sounds like strain,” and sent me away with the name and phone number of a neuro-ophthalmologist, for an expert opinion. Read more…

A Simpler Cup of Coffee

Although I love the aroma, I don’t drink coffee. I’m a tea person. But I brew coffee every morning for my other half, Rebekah. “Sometimes I think you married me just because I make your coffee,” I told her recently.

She smiled without looking up from her magazine. “That, and you clean the mug.”

She’s one of those people who can’t function without coffee. “It’s a drug,” she says. “I need it. I want the good stuff, but I’ll take whatever’s around.” Rebekah works in medicine, and medicine runs on caffeine. But the ridiculousness of modern coffee culture and its demanding, expensive, rarified preparation turned her against her favorite drink and sent her into the arms of a lesser lover: instant. Yes, the granules.

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Women Were Included in the Civil Rights Act as a Joke

Airline advertisements give a general idea of women's role in the workplace in the 1960s. Via Flickr.

Gillian Thomas | Because of Sex: One Law, Ten Cases, and Fifty Years That Changed American Women’s Lives at Work | St. Martin’s Press | March 2016 | 20 minutes (5,287 words)

The excerpt below is adapted from Because of Sex, by Gillian Thomas. This story is recommended by Longreads contributing editor Dana Snitzky

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If there had been any necessity to point out that women were a second-class sex, the laughter would have proved it.

On February 8, 1964, an eighty-year-old segregationist congressman named Howard Smith stepped onto the floor of the House of Representatives and changed the lives of America’s working women forever.

It was the eighth and last day of debate on a bill that would become the landmark 1964 Civil Rights Act, and Smith had a proposed amendment to Title VII, the section dealing with equal employment opportunity. The current draft already prohibited discrimination because of race, color, religion, and national origin, but Smith, a Democrat from Virginia, wanted to add one more category. The clerk read Smith’s proposal aloud. “After the word ‘religion’ insert ‘sex’ on pages 68, 69, 70 and 71 of the bill.”

Smith played his “little amendment” for laughs, claiming to have been inspired by a letter he had received from a female constituent. She asked the government to “protect our spinster friends,” who were suffering from a shortage of eligible bachelors. Over guffaws from his virtually all-male audience, Smith concluded, “I read that letter just to illustrate that women have some real grievances and some real rights to be protected. I am serious about this thing.” Emanuel Celler of New York, the bill’s floor manager in the House, joined in the fun. “I can say as a result of forty-nine years of experience—and I celebrate my fiftieth wedding anniversary next year—that women, indeed, are not in the minority in my house,” he said. “I usually have the last two words, and those words are, ‘Yes, dear.’”

Several of the House’s twelve women representatives rose to try to silence the laughter and advocate seriously for the amendment. Martha Griffiths, Democrat of Michigan, was the one who finally succeeded. “I presume that if there had been any necessity to point out that women were a second-class sex,” she said, “the laughter would have proved it.” Griffiths (who supported the bill) made a shrewd appeal to the Civil Rights Act’s opponents, mainly Southern Democrats like Smith. By then, it looked inevitable that the law they hated had enough votes to pass. So she warned that without the sex provision, Title VII would afford more rights to black women than to white women. “A vote against this amendment today by a white man is a vote against his wife, or his widow, or his daughter, or his sister.”

The session eventually dubbed “Ladies Day in the House” had the hallmarks of an impromptu stunt by Smith to try to sink the Civil Rights Act. Civil rights for African Americans might have been palatable to many white legislators now that the horrors of Bull Connor and Birmingham had become national news, but civil rights for women were, literally, a joke.

Though it might have seemed incongruous for an avowed enemy of civil rights, Howard Smith had a long history of supporting the Equal Rights Amendment. Under pressure from the ERA’s supporters, he actually had been dropping hints for weeks that he intended to offer a “sex” amendment. (Most of the ERA’s supporters were white, and many kept alive a legacy of not-so-subtly racist activism dating back a century that decried expanded legal protections for African American men, such as the right to vote, that were denied to women.) As a friend to southern manufacturing interests, Smith also might have understood the human capital that would be freed up by a federal law nullifying widespread state law restrictions on women’s ability to work as many hours as men.

When Smith’s amendment was put to a vote a few hours later, it passed 168 to 133, with the most votes in favor cast by Republicans and Southern Democrats. From the gallery came a woman’s shout, “We’ve won! We’ve won!” and then another’s cry, “We made it! God bless America!” After the bill moved to the Senate for consideration, Smith’s amendment remained intact. When President Lyndon Johnson signed the Civil Rights Act into law on July 2, 1964, among its provisions was a ban on discrimination in employment “because of sex.” Read more…

A Liberated Woman: The Story of Margaret King

Emma Garman | Longreads | May 2016 | 16 minutes (4,200 words)

 

In October 1786, 27-year-old feminist philosopher Mary Wollstonecraft journeyed from London to her new temporary home: an imposing Palladian-style mansion in County Cork, Ireland. Set in 1,000-plus acres of woodland, flanked by colonnades leading to outbuildings, and featuring statued terraces, vineyards, and conservatories, Mitchelstown Castle was the seat of Robert and Caroline King, who as Lord and Lady Kingsborough were the country’s largest landowners.

To Wollstonecraft’s radical sensibilities, such aristocratic excess was anathema. (As, no doubt, was the depiction of The Rape of Proserpina that graced the mansion’s entrance hall ceiling.) Still, she needed to financially support herself, as well as her two sisters, so had agreed to join the Kingsborough household’s 80-strong staff as governess to three girls. Caroline, it was rumored, had dismissed Wollstonecraft’s predecessor for sleeping with Robert. But she viewed the new hire as trustworthy, a principled woman of intellect unlikely to catch her husband’s eye. And Wollstonecraft, who had already written her first book—the soon to be published Thoughts on the Education of Daughters—wasn’t about to start batting her eyelashes at his lordship. His “countenance,” she wrote sniffily to her sister Eliza, “does not promise much more than good humour.” Read more…

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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The Defenders

Common space at the Bronx Defenders. All photos by Matthew Van Meter.

Matthew Van Meter | April 2016 | 25 minutes (6,411 words)

This story was co-published with The Awl and funded by Longreads Members.

 

On December 20, 2013, Christine Morales got up at seven to make breakfast for Kierra, her two-year-old daughter. They lived in a public housing project in Hunt’s Point in the south Bronx, where Morales worked as a security guard at a grocery store. When they were getting ready to leave, the door of the apartment exploded. Police officers burst in, carrying shields, guns drawn. One waved a search warrant; Kierra started to wail. As an officer pushed Morales to the wall and handcuffed her wrists, her mind raced: she thought through everything she had ever done wrong, trying to understand what had brought the police into her home.

Morales’s arrest instantly set in motion a chain of dispiriting events. Because Kierra was two, and the arrest was for a drug charge, the Administration of Children’s Services opened an investigation. Because Morales lived in public housing, the New York City Housing Authority began eviction proceedings. The police built a case to lock her out of her apartment under a Nuisance Abatement law. Finally, she lost her security license, so she could not go to work.

After spending the night in central booking, Morales was assigned a public defender, Seann Riley, for her arraignment at Bronx Family Court. He asked her about her case and her concerns; she said she just wanted to see her daughter again. The prosecutor read her charge aloud: possession with intent to distribute—Morales’s boyfriend had been dealing drugs out of their apartment. However, Riley pointed out that when police raided the apartment, they had been looking for her boyfriend, not her. The judge released Morales. Meanwhile, her father had taken Kierra to family court, where a lawyer from the child-protection agency insisted that she be placed in foster care for protection. Morales’s boyfriend pleaded guilty to felony drug possession, and, two weeks after her arrest, the prosecutor dropped all the charges against her.

At her family court hearing, Morales learned that Kierra would not be coming home, despite the lack of charges. The judge told her she wasn’t trustworthy, and that her boyfriend had taken the fall for her. She was allowed to see her daughter, supervised, at the child protection facility. When time came to leave, Kierra would ask why she couldn’t go home with mommy, and Morales would try to explain, trying to keep it together until she walked out the door.

Morales’s experience is common in New York, and more common still in the Bronx. Kierra was one of more than ten thousand children placed in foster care, almost all after suspicion of parental neglect—a catchall term that includes everything from excessive corporal punishment to missing doctor appointments. Morales’s poverty was her vulnerability: living in public housing subjects a resident to twenty-four-hour surveillance and automatic eviction after being charged with even low-level crimes.

When the criminal charges against her were dropped, her public defender had technically done his job. The government is required to provide a lawyer to help people through criminal court, nothing more. But Morales’s lawyer was from the Bronx Defenders, which extends representation from criminal court to family court, housing court, and immigration court. Morales was one of 30,000 Bronx Defenders clients in 2014—the only criminal defendants in the city or the country to receive these across-the-board services.

Even after her charges were dropped, Morales had a family attorney and a parent advocate to challenge the family court judge’s ruling. When the police locked her out of her apartment, a civil lawyer from her team got them to let her back in after a few hours. Her advocate, who is not a lawyer, helped her set up parenting classes, and a social worker checked in with her to see how she was dealing with life alone and to offer moral support. Kierra finally came home in June 2014, six months after the arrest. Read more…

Liar: A Memoir

Rob Roberge | Liar: A Memoir Crown | February 2016 | 23 minutes (5,688 words)

When Rob Roberge learns that he’s likely to have developed a progressive memory-eroding disease from years of hard living and frequent concussions, he’s terrified at the prospect of losing “every bad and beautiful moment” of his life. So he grasps for snatches of time, desperately documenting each tender, lacerating fragment. Liar is a meditation on the fragile nature of memory, mental illness, addiction, and the act of storytelling. The first chapter is excerpted below.

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Into the World of Mushrooms: A Reading List

Is it weird I’ve been planning a mushroom-themed reading list for a long time? Probably. But mushrooms are intriguing. What other substance on earth is sustenance, poison, psychedelic drug, medicine and delicacy? There are approximately 1.5 million kinds of mushrooms (I Googled it). They survive via underground communication networks called mycelium. The biggest recorded mycelium is over 2,000 acres across, in Oregon. In the following five pieces, you’ll meet foragers, hikers, researchers, anthropologists, drug dealers and puppies. You’ll have a newfound appreciation for the men and women who devote themselves to studying these weird, wild fungi. Read more…

To Consider Myself a Human Being

Ji Xianlin | The Cowshed: Memories of the Chinese Cultural Revolution | New York Review Books | Jan. 2016 | 26 minutes (6,690 words)

 

What follows are three excerpts from Ji Xianlin’s The Cowshed, courtesy of New York Review Books. As the publisher notes:

In contemporary China, the Cultural Revolution remains a delicate topic, little discussed, but if a Chinese citizen has read one book on the subject, it is likely to be Ji’s memoir. When The Cowshed was published in China in 1998, it quickly became a bestseller. The Cultural Revolution had nearly disappeared from the collective memory. Prominent intellectuals rarely spoke openly about the revolution, and books on the subject were almost nonexistent. By the time of Ji’s death in 2009, little had changed, and despite its popularity, The Cowshed remains one of the only testimonies of its kind. As Zha Jianying writes in the introduction, “The book has sold well and stayed in print. But authorities also quietly took steps to restrict public discussion of the memoir, as its subject continues to be treated as sensitive.”

The Cowshed is invaluable in its own right as a harrowing story of how the Cultural Revolution played out on an urban campus, but perhaps even more importantly as a glimpse into how those years of turmoil are remembered in mainland China. Read more…