Thursday, January 04, 2024

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.



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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.



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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.



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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.



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Wednesday, January 03, 2024

How Do You Make a Movie About the Holocaust?

Director Jonathan Glazer’s new film “The Zone of Interest” is about the commandant of Auschwitz, Rudolf Höss, and his wife, Hedwig. By design, audiences never see what’s happening inside the camp, despite the Höss family’s compound sharing a wall with it. This skillful analysis of the film, by Giles Harvey, examines Glazer’s unique approach to telling a story about the Holocaust while not depicting its violence:

Audaciously, the German-language film invites us to regard its central couple not as calculating monsters, the way we’re used to seeing Nazis depicted onscreen, but as ordinary people acting on recognizable motives. For the most part, the Hösses want the things we want: comfort, security, the occasional treat. In an early scene, we see them chatting in their twin beds. Hedwig (Sandra Hüller) asks Rudolf (Christian Friedel) if he will take her back to the spa they once visited in Italy. “All that pampering,” she says, her head propped up on her hand, beginning to reminisce. “And the walks. And that nice couple we met.” Suddenly she succumbs to laughter as a further, Chekhovian detail bubbles up: “And that man who played the accordion to the cows.” Rudolf replies, “They loved it.” The conversation is so mundane and universal—this could be any wife addressing any husband—that it’s possible to forget, if only for a moment, just whose pillow talk we are listening in on.

“I wanted to humanize them,” Glazer, who is Jewish, said—in the sense, he quickly clarified, of showing the Hösses as only human, all too human. “I wanted to dismantle the idea of them as anomalies, as almost supernatural. You know, the idea that they came from the skies and ran amok, but thank God that’s not us and it’s never going to happen again. I wanted to show that these were crimes committed by Mr. and Mrs. Smith at No. 26.”

In doing so, he is pushing back against an edifice of conventional wisdom. Thinkers as varied as Jewish theologians and postmodern theorists have conceived of the Holocaust as a singular, almost transcendent disaster—[Eli] Wiesel’s “ultimate mystery.” This impulse to sequester the Nazi Judeocide from the rest of human experience is understandable, but in the words of the historian Robert Jan van Pelt, it inadvertently consigns the death camps “to the realm of myth, distancing us from an all too concrete historical reality.” It is this concrete historical reality that “The Zone of Interest” seeks to recover.



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Tuesday, January 02, 2024

Meet the Con Artist Who Deceived the Front Range Tech Community

Aaron Clark was a promising Black businessman in Colorado’s tech scene, rising in the community at a time when companies pledged to invest more in its diversity, equity, and inclusion efforts. But Clark turned out to be a scam artist. In this 5280 story, Chris Walker digs into Clark’s past and history of grift and failed business ventures, spanning the Bay Area and overseas in Nairobi’s Silicon Savannah.

The moment Clark made another excuse about the room, the college student fired back. “I don’t think Nicole would be too happy to hear about this,” he said, referring to Clark’s probation officer.

The threat worked, and weeks later, Hoynacki received a refund. Still, the undergrad was shaken up enough that he called local police, and through a free legal service offered at Cal, learned about other students who had reported problems with Clark. One year later, in September 2014, the Alameda County district attorney issued a 13-count indictment against Clark, including nine felony charges for grand theft and forgery. Clark pleaded no contest to one felony count of grand theft of real property and received five years of probation.

This time, he paid back the full $14,100 he owed to his victims. But Clark was still writing those restitution checks when he began creating trouble on an entirely different continent.



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On Beauty and Violence

Be forewarned: N.C. Happe’s beautiful essay for Guernica can sometimes be difficult to read. As she recounts her childhood and her move to Canada, she considers the violence we inflict on ourselves and others, the violence we invite and accept, and the ways we compromise ourselves to feel like we belong.

After a childhood spent observing my father’s moods, I had come to believe something fixed about violence: that fury alone was its precursor. I had grown too familiar with his penchant for threats, the flash of a flat palm contacting a wall. His footfall, like thunder, moving over the floor.

Although once in a while the doe came to mind, and I found myself pausing. I would consider the wings in my closet, the bones in brown bags. The rough contours of a contradiction emerging, yet to be named. When he dragged the doe’s slack body behind him that day, something in my father’s behavior had given me pause. He was moving more slowly than usual — brows furrowed, mouth bowed and nearly forlorn. He had lifted the corpse with a reverent gentleness and eased it to the ground. He had even murmured a prayer.



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