Friday, January 05, 2024

The Top 5 Longreads of the Week

The rollercoaster of losing your health. Analyzing the film The Zone of Interest. An unusual con artist. Calculating love versus genetics. Recalling a dark childhood. All that—and more—in our first edition of 2024.

1. My Unraveling

Tom Scocca | New York Magazine | January 2, 2024 | 6,677 words

Sometimes it feels like medical mystery stories are everywhere. Long COVID. Rare disorders. The New York Times’ ever-popular “Diagnosis” column. It’s a genre to itself, and by now we know that genre’s beats: onset, frustration, revelation, closure. Tom Scocca’s own experience, though, enjoys no such arc. From the moment he notices symptoms—innocuous at first, but not for long—uncertainty is his only constant. “I’ve told the story over and over, to various doctors, till it almost sounds like a coherent narrative,” he writes. It’s not a coherent narrative, of course. That’s not how these things work, no matter what similar stories may suggest. But Scocca meets the incoherence head-on with spare, even wry, prose: “I started buying five-pound bags of rice from H Mart instead of ten-pound ones. Then I just started getting rice delivered.” His malady takes root during a professional down period, and financial dread lurks in the background here, making each new physical issue that much more harrowing. He finishes a recruiting call before going to the ER; he has a phone interview hours after he wakes up from a muscle biopsy. All the while, his body betrays him in novel and confounding ways. That’s not to say he doesn’t find some measure of relief. He does. What he doesn’t find is answers, which is exactly what makes this piece so destabilizing. “This is what disability advocates have said all along,” he writes, “not that it usually sinks in: The able and the disabled aren’t two different kinds of people but the same people at different times.” —PR

2. How Do You Make a Movie About the Holocaust?

Giles Harvey | The New York Times Magazine | December 19, 2023 | 4,710 words

I have seen The Zone of Interest, the film that this article is about, twice now. It is a hypnotizing, unnerving masterpiece. For the unacquainted, a quick description: the movie is about Rudolf Höss, the real-life commandant of Auschwitz, who lived in a home that shared a garden wall with the camp. Director Jonathan Glazer never shows audiences what goes on inside the camp—though you hear it; god, do you hear it—choosing instead to focus his lens on the quotidian existence of Höss, his wife, and their five children. The effect of this bifurcation of sight and sound is extraordinary, as writer Giles Harvey explains in this essay. “The average viewer is unlikely to see himself in the figure of a death-camp C.E.O., but a family that sleepwalks through their own lives, heedless of the suffering that surrounds them, may feel closer to home,” Harvey writes. “To a greater or lesser extent, we all ignore and deny the pain of others, including—perhaps especially—when that pain is inflicted by our own governments on designated enemies.” It is fitting that such an astonishing movie is the subject of one of the best pieces of film criticism I’ve read in ages. Harvey pulls from philosophy, history, and conversations with Glazer and his team to situate The Zone of Interest both in the canon of Holocaust films and in our present moment. See: Trumpism. See also: Gaza. “When I first started on this, I genuinely couldn’t get my head around how a society could have gone along with these hideous ideas,” Glazer tells Harvey at one point. “During the time of making the film, it’s become blindingly obvious.”—SD

3. Meet the Con Artist Who Deceived the Front Range Tech Community

Chris Walker | 5280 | December 29, 2023 | 6,863 words

As I browsed links I’d missed over the holidays, André Carrilho’s colorful illustration for this 5280 story caught my eye. I’m glad I clicked. In my post-holiday COVID haze, not many stories have held my attention, but this piece by Chris Walker, about a con artist named Aaron Clark, was easy to read and enjoy. Clark was a rising star in Colorado’s tech scene in 2020: a promising Black businessman who could spark change at a time when companies pledged to invest more in DEI efforts. But the only thing Clark brought to the table, in any venture, was financial chaos. As Walker follows the trail of breadcrumbs into this mysterious man’s past, he finds a history of business scams in California and abroad in Nairobi’s emerging tech community and a man with a habit of disappearing, changing identities, and starting fresh. But why would someone with the ability to really make an impact resort to this? “In key ways, he never fit the mold of a classic con man,” writes Walker. Ultimately, Clark’s deceit seeded distrust in Colorado’s startup world, now making it harder for Black entrepreneurs and DEI consultants to get buy-in and attract investors. A curious tale of grift. —CLR

4. Love in the Time of Sickle Cell Disease

Krithika Varagur | Harper’s Magazine | August 1, 2023 | 8,133 words

I had missed this piece when it was originally published by Harper’s in August, but, luckily, it caught my attention after The Guardian published an edited version in December. Nkechi and Subomi first met at work. They first spoke while doing community service together. They first went for a drink at a dive bar, and Nkechi first revealed her genotype after a few days. From the beginning, they knew they had “no business” dating. Subomi had two abnormal S genes for hemoglobin, meaning he had sickle cell disease. Nkechi was a carrier—with one abnormal S gene and one normal A gene. There was a 50 percent chance their children would have the disease. Opening with their love story, Krithika Varagur instantly pulls you into a world where sharing genotype screening is typical, and a social norm is consolidating against two people with sickle cell genes from dating. Perhaps understandable in a society where nearly six million people carry the disease (Nigeria is the sickle cell capital of the world). But what about when love happens, “like a coconut dropping on your head while you’re walking down the street?” Varagur meticulously delves into the people behind the stats, talking to many disease carriers: single, married, separated, parents, and non-parents. But Nkechi and Subomi’s story is the constant thread, and the investment in their tale sheds the most light on how devastating genotype calculations can be. —CW

5. On Beauty and Violence

N.C. Happe | Guernica | December 11, 2023 | 5,021 words

It can be appealing to try to blow the dust off the old you and reinvent yourself in a place where you’re a stranger. As N.C. Happe recounts her move to Canada in this beautiful but sometimes difficult read for Guernica, she recalls her Minnesota childhood and her father’s dark moods and explosive temper alongside the casual—and sometimes invited—violence of the playground. Cinematic details make this essay an immersive read. You can hear a dying deer bleat and imagine its accidental and untimely death. You can feel the author’s cracked dry lips; you can taste the copper when they bleed. “The realization dawned: violence runs in the blood of everything, everywhere,” she writes. “For me, it took leaving the country to learn this. For the doe from my childhood home, it had been as simple and as quietly done as jumping a fence.” What Happe shows us through this thoughtful piece is that while sometimes you can jump the fence and leave home, you might be surprised by what you’re unable to leave behind. —KS


Audience Award

What was our first editor’s pick winner of the year?

The Age Gappers

Lila Shapiro | The Cut | December 20, 2023 | 6,405 words

At times, this is a slightly uncomfortable read—particularly in discussing why men value younger women. However, it also offers a more balanced and nuanced approach than many a take on this topic, and Lila Shapiro’s writing is as sharp as ever. (The photographs of couples taken on their beds are also strangely fascinating.) —CW



from Longreads https://ift.tt/UwYcnx5

Check out my bookbox memberships! 3, 7, or 15 vintage books a month sent to organization of your choice, or to yourself!
https://ift.tt/1uLHQbc

Thursday, January 04, 2024

Multigenerational Living Often Makes Sense. That Doesn’t Make It Easy

A multi-level house might feel like the perfect way to share a home your elderly parents. And maybe it is—to a point. As Kevin Chong points out with candor and humor, old dysfunctions die hard. Bookmark this one; you might need to consult it a few times (or a hundred) somewhere down the road.

My wife and I are covering the mortgage for a house on which my mother placed a seven-figure down payment, while I’m taking my mother to appointments, hauling out her garbage, and doing her internet troubleshooting. In exchange, we’re living in a space and a long-gentrified neighbourhood we love, one we couldn’t otherwise afford. We also get free child care that consists of trips for dim sum and lightly supervised iPad time for my eight-year-old daughter.

And yet that narrative still gets steamrolled by the stigma. At an appointment at the kidney clinic, my mom will tell the nurse that we live together. I am always quick to blurt out my qualifiers: WITH MY WIFE! AND MY CHILD! (WHOM I CONCEIVED DOING ADULT THINGS!) ON SEPARATE LEVELS!



from Longreads https://ift.tt/SuPX7Ra

Check out my bookbox memberships! 3, 7, or 15 vintage books a month sent to organization of your choice, or to yourself!
https://ift.tt/1uLHQbc

The Fearlessness of Kanji

Kanji (rice gruel) is a common feature in South Asian homes, but for some, it is more than just a meal. In this piece, Pallavi Pundir discovers how kanji became a Tamil symbol of resistance in Sri Lanka, and the painful memories it can now invoke. A vivid essay on just how much memory and trauma can be held in a simple dish.

The aftermath of the war brought in sweeping military presence and restrictions in the north and east, even as the country opened up access to the north for war tourism in 2014. Since then, simple acts of remembrance like cooking and serving kanji have become a dangerous form of resistance, often inviting police surveillance and action.



from Longreads https://ift.tt/FDO0bGY

Check out my bookbox memberships! 3, 7, or 15 vintage books a month sent to organization of your choice, or to yourself!
https://ift.tt/1uLHQbc

The Favourite Patient

Richa Kaul Padte suffered from unexplained, debilitating chronic illness including fatigue and dizziness for three years until an orofacial surgeon and pain management specialist discovered that Padte’s severely dislocated jaw was behind her medical problems. For Hazlitt, Padte relates seeing a myriad of medical professionals to no avail and the unusually close doctor-patient relationship she developed with the one person who had offered her some relief.

Over the years, I have often wondered why I so urgently want to be my doctors’ favourite. The most obvious reason is that if doctors like me, they’ll treat me better. There is an undeniable truth to this: doctors’ biases and prejudices often show up in differential treatment. Even if I tell myself it isn’t true for my doctors, surely at some level I know it could be.

At first, my leading theory was that I’m an A+ student, in this as everything else. My doctors give me balance exercises, so I do them religiously. They propose a gluten-free diet, and I ferry beetroot pasta from Bombay to Goa. When there’s homework, I look for extra credit. But if I’ve substituted doctors for teachers, the conjecture falls apart. I was never invested in being the teacher’s pet. I always wanted to be at the top of the class—not the favourite so much as the best.

My partner’s theory is that I have Stockholm syndrome, doctors edition. I’m trapped in their world, and instead of resenting and mistrusting them, I’ve become obsessed with them. There’s some truth to this, too: if I weren’t perpetually stuck in their clinics, in their waiting rooms, at their mercy, I would be free. Instead of freedom, I’ve found love. It helps that like true kidnappers, they keep me oriented toward a hopeful future where—if I follow all their rules—I may one day be liberated.



from Longreads https://ift.tt/W2M3Fx5

Check out my bookbox memberships! 3, 7, or 15 vintage books a month sent to organization of your choice, or to yourself!
https://ift.tt/1uLHQbc

Love in the Time of Sickle Cell Disease

A powerful investigation into dating when the genetic odds are against you. Krithika Varagur talks to couples in Nigeria, the sickle cell capital of the world. (Its residents account for about half of all new annual cases of severe hemoglobin disorders worldwide.) The moving case studies show the true struggle of weighing risk against attachment.

From the beginning, Nkechi knew that she and Subomi had “no business dating.” His genotype was SS: he had two abnormal S genes for hemoglobin, the oxygen- carrying protein in his blood. Nkechi’s genotype was AS: she had one abnormal S gene and one normal A gene. Like an estimated quarter of all Nigerians, she was a silent carrier. There was a 50 percent chance that any child they had would suffer from sickle cell disease like their father. This was no light prospect. Subomi’s own childhood had been marred by secrecy and shame over his condition. Nkechi, meanwhile, had lost four cousins to the disease. Those deaths might be understood as products of an earlier, benighted time, when the average Nigerian knew far less about genetic testing and disease management. Today, however, there was a growing consensus— particularly in their college- educated, upper- middle- class milieu—when it came to passing on two sickle cell genes: don’t risk it.



from Longreads https://ift.tt/Qxbhjni

Check out my bookbox memberships! 3, 7, or 15 vintage books a month sent to organization of your choice, or to yourself!
https://ift.tt/CrlDi8f

My Unraveling

For New York, Tom Scocca chronicles his long descent into a mysterious ailment—or set of ailments—that made an already bad year much, much worse. He does so with grace and humor, but that doesn’t cushion the piece’s impact. This is no House episode; easy answers aren’t waiting around the corner, in a brilliant specialist’s brain. Even Scocca’s recovery, such as it is, only heightens the feeling that we live every day at the mercy of the unknown.

I stopped leaving the apartment. The project of washing left me needing to lie down. One morning, or possibly afternoon, it took me four or five tries to shrug my way into my bathrobe, nearly overcome by the weight and friction. I gave up on shaving, and the rattiest stubble of my life took over my chin. The kids were put in charge of the cat box because I couldn’t reach that corner of the bathroom anymore, but one night I got down on the floor to help and when we were done I couldn’t stand up. I didn’t even know how to start to try. Eventually, my wife grabbed me under the armpits from behind and hauled me most of the way upright while I gabbled warnings about my legs giving way.

Two different realities or images stood superimposed in my mind. There was the body I’d occupied two months ago — my body, as I understood it — walking over to Broadway for pizza, taking the younger boy to the basketball courts, ducking into Central Park to climb the Great Hill. And then there was Andrew Wyeth’s Christina’s World, a gaunt figure dragging her useless legs along the ground. If this was histrionic or self-pitying, it seemed less so on the days when I couldn’t raise my hips up off the floor. The only thing that still felt more or less normal was sitting at a desk, doing the work I was trying to get someone to pay me to do.



from Longreads https://ift.tt/QFUbto5

Check out my bookbox memberships! 3, 7, or 15 vintage books a month sent to organization of your choice, or to yourself!
https://ift.tt/CrlDi8f

A Medical Nightmare

gray and moody illustration of a woman's silhouette behind a hazy broken window, with the glass broken at her abdomen and uterus area

Rae NudsonThe Atavist Magazine |December 2023 | 1,950 words (7 minutes)

This is an excerpt from issue no. 146, “Damages.


1.

*Asterisks denote pseudonyms.

Debra* had hoped that her medical nightmares were over. In 2009, she was diagnosed with breast cancer that had spread to her lymph nodes. The disease was estrogen positive, which meant that it was feeding on her reproductive hormones. After six months of chemotherapy and a double mastectomy, the cancer was declared in remission. To keep it that way, doctors put Debra on tamoxifen, a hormonal drug used as a prophylactic against certain types of breast cancer. She expected to be on it for about five years.

Debra has a wide smile, dimples, and thin, arched eyebrows. She likes high heels and she likes to talk. She used to work as a hairstylist, a job well suited to someone who falls easily into conversation with strangers. She is also a mom to two boys, and always wanted more kids. Patients on tamoxifen are advised against becoming pregnant; Debra, who was in her early forties when she started taking the drug, planned to conceive once she’d completed treatment.

The Atavist Magazine, our sister site, publishes one deeply reported, elegantly designed story each month. Support The Atavist by becoming a member.

Then, about halfway through her tamoxifen regimen, Debra got a letter in the mail with bad news: The results of her latest pap smear were abnormal. She had undergone the procedure, which involves scraping cells from the cervix, during a routine visit to a Veterans Affairs medical center near her home in Portsmouth, Virginia. (Debra was in the Air Force from 1988 to 1992.) An abnormal pap can indicate the presence of cancerous or precancerous cells; follow-up testing is usually recommended.

Debra knew that even with the tamoxifen, there was a risk that her cancer might come back, possibly in a part of her body other than her breasts; oncologists call this a distant recurrence. So she took the pap results seriously. When the VA referred her to two ob-gyns, Debra reached out to both. One had a monthslong waiting list, but the other had immediate availability. His name was Javaid Perwaiz. 

Dr. Perwaiz’s main practice was in a small redbrick building near a strip mall in the city of Chesapeake. The parking lot had 14 spaces, including one for handicapped drivers, and cars came and went in quick succession. Perwaiz had a reputation for working fast: An established patient could expect to arrive for an appointment and be back in their car in under 15 minutes. The waiting room was small, with a vaulted ceiling, a bank of windows, and walls painted a soothing mauve. Many of Perwaiz’s patients were Black women on Medicaid. Debra fit that profile.

When she met Perwaiz in July 2012, Debra felt confident about him as a doctor. He was in his early sixties and short, with a thick, well-groomed white mustache, bushy eyebrows, and a comb-over. During appointments he wore a white coat. He was matter-of-fact but not cold. He remembered details about his patients’ personal lives and asked about their loved ones.

According to Debra, after performing some tests, Perwaiz told her that she had precancerous cells on her cervix that would likely develop into cancer. He said that there was no drug she could take to stop that from happening. Given her history of breast cancer, he recommended a hysterectomy.

Debra was shocked and scared. She didn’t want to lose her ability to have more children. But she also wanted to live to see her sons grow up. After subsequent appointments with Perwaiz, during which she underwent additional tests, she agreed to have surgery, but said that she didn’t want her abdomen cut open. The doctor who performed the C-section during the birth of her first son had used a “beautiful subcutaneous suture” to close up the incision, resulting in a faint scar. “You couldn’t even tell that I’d ever had a surgery,” Debra told me. She wanted to keep her stomach the way it was. According to Debra, Perwaiz assured her that he could perform the surgery through her vagina; no abdominal incision would be required.

Debra trusted what Perwaiz told her. From their conversations, her understanding was that he would remove only her ovaries, because decreasing the estrogen in her body might diminish the risk of her cancer recurring. In fact, a hysterectomy by medical definition involves the removal of the uterus. But Debra didn’t know this going into surgery, because, she said, Perwaiz never explained it to her.  

On the morning of December 29, Debra arrived at Chesapeake Regional Medical Center and filled out the required paperwork for her procedure. One of the nurses was someone she knew from church, a friendly face. Then Debra was prepped for the operating room and given the sedative propofol. Hospital staff were wheeling her on a gurney down a hallway when she saw Perwaiz.

“What time do I need to tell my friend to come back and pick me up?” Debra asked him.

“That’s not the surgery you signed for,” she remembered Perwaiz replying.

She wasn’t sure what that meant. The propofol was making her sleepy. Then everything went dark.

When Debra woke up in a recovery room, she knew something was wrong. Groggily, she moved her hands to her stomach. She found tape covering an incision. Debra didn’t understand. She began to cry.

She was discharged the next day, and only then did it fully sink in: Perwaiz had performed an invasive surgery, slicing into her abdomen. Within a few days, Debra felt persistent, agonizing pains in her lower belly. The area also became swollen and tender. Debra was alone most of the time—her elder son had already moved out, and the younger one was in school during the day. She had trouble getting out of bed.

Debra called Perwaiz’s office for a prescription to help with the pain. When the medicine didn’t work, she called again. According to Debra, she spoke with Perwaiz directly. “Women all over the world go through this,” he told her. “You are just going to have to get used to the pain.” She was so out of it that she let the comment go. “I didn’t have the wherewithal to chew his head off,” she told me.  

One day a friend called to check on her and was alarmed to hear Debra cursing and not making sense. The friend drove to Debra’s house, and when nobody came to the door, she persuaded the landlord to open it. Inside, Debra was lying down; her skin was turning blue, and her stomach was so distended that she looked nine months pregnant. Her friend called 911, and an ambulance rushed Debra back to Chesapeake Regional.

Debra wondered if she was dying. In her head, she could hear a hymn her grandmother used to sing: 

I know it was the blood,
I know it was the blood,
I know it was the blood for me;
One day when I was lost
He died upon the cross,
I know it was the blood for me.

At the hospital, Debra learned that Perwaiz had removed more than her ovaries: Her uterus, cervix, and fallopian tubes were gone too. A diagnostic scan showed that a large amount of fluid had built up in her abdomen, and labs indicated that she had severe acute renal failure. There was also a perforation in her bladder—one of six, she later learned, made during her surgery. She was in sepsis.

Debra remained in the hospital for several days. She slipped in and out of consciousness. At one point she thought she saw Perwaiz at the foot of her bed. He looked nervous to her; his hands were clasped. “He might have been praying, ‘Please live,’ ” Debra said.

Debra knew about the history of coerced sterilization in America, of doctors persuading women of color to undergo unnecessary hysterectomies or performing the surgeries against their will. She couldn’t help but see her case in that context.

She did live. She had to wear a catheter for several weeks, but she got better. The long recovery gave Debra time to think on what she wanted to do about the man who had hurt her. “I’m gonna get this motherfucker—that’s how I was feeling in my head,” she said. “You don’t want to mess with me. I got teeth. I spit sulfuric acid.”

She requested her medical records and was stunned to find discrepancies with what Perwaiz had said to her during appointments. Most glaringly, she didn’t see any mention of precancerous cells on her cervix; the tests Perwaiz performed on her had come back normal. “If I was normal,” Debra said, “why did I have a surgery?”

There were other inconsistencies. One form from an appointment described Debra complaining of back and pelvic pain, which she told me she never did. Another document dated the day before her surgery stated that she “insisted on having those ovaries removed through the abdominal wall incision and not vaginally,” and that the “consent obtained after entirely counseling the patient [was] for abdominal hysterectomy.” In fact, she had requested the opposite surgical approach, and she recalled no such conversation with Perwaiz; the only time she’d spoken with him in the lead-up to her procedure was in passing in the hospital hallway.

Debra was sure she had a malpractice case. She went to several lawyers, but none of them would take her on as a client. “So many men—man after man saying, ‘You had a decent amount of care, and that’s all you’re afforded,’ ” she said. Frustrated, she came up with a new plan: “I said, ‘Alright, I’m going to learn how to sue this bastard myself.’ ” (Perwaiz declined to comment for this story.)

Debra enrolled in a paralegal program at Tidewater Community College. She learned how to research case law, how to write briefs, and how to file a suit. She didn’t have an Internet connection at home, so she used a law library at a nearby university to access everything she needed. She meticulously highlighted key phrases in her medical records and made notes in graceful cursive. When requesting materials for her case from health care providers, she signed emails “respectfully,” but she was not sorry to bother anyone. She followed up. She was tenacious. To get anything done, she knew that she had to rely on herself. “I was now acutely aware that people can’t be trusted,” she said.

As it is in much of the U.S., the statute of limitations for malpractice in the state of Virginia is two years from the date of occurrence. Debra filed her suit on December 23, 2014, six days shy of the cutoff. She asked for $1.5 million in punitive damages and to be compensated for loss of enjoyment of life, loss of the ability to reproduce, and diminished sexual intimacy, as well as lost wages and medical expenses.

Someone told her to file the suit in state court, but Debra declined. She knew about the history of coerced sterilization in America, of doctors persuading women of color to undergo unnecessary hysterectomies or performing the surgeries against their will. She couldn’t help but see her case in that context. She believed that the suit belonged in federal court because Perwaiz had violated her most fundamental rights.

A judge disagreed. In January 2015, Debra was asked to provide a valid reason why hers should be a federal case, and not one decided by a lower court. She responded with documentation explaining her position, but that May her case was dismissed for lack of jurisdiction. She appealed the decision, until one day she missed a filing deadline. According to Debra, she hadn’t received paperwork she needed to complete until the day before it was due, and there was no way she could get it to the court on time.

Just like that, her legal campaign to hold Perwaiz accountable was finished. But there were more patients like Debra, more women Perwaiz had injured. There were numerous dots waiting to be connected—someone just had to come along and do it.



from Longreads https://ift.tt/Z1I47ON

Check out my bookbox memberships! 3, 7, or 15 vintage books a month sent to organization of your choice, or to yourself!
https://ift.tt/CrlDi8f