When the Doctor Doesn’t Listen

Over time, some doctors have been quick to default to psychological explanations for medically unexplained illnesses. For Coda, David Tuller tells the story of Maeve Boothby O’Neill, a bright young woman in England who was diagnosed in 2012 with myalgic encephalomyelitis or ME — also known as chronic fatigue syndrome — after several years of constant exhaustion and poor health. Doctors said her symptoms were “normal for her age” and “all in her mind,” and continually shrugged off her illness as psychological, rather than biological. After a gradual decline in health, Maeve died at 27, essentially from malnutrition, because the hospital refused to tube-feed her. Through interviews with Maeve’s mother, access to Maeve’s diary, and other reporting, Tuller recounts Maeve’s journey and mistreatment from the NHS over the years, shining a harsh light on the medical establishment’s long history of ignoring patients whose illnesses they don’t understand. But, as Tuller writes, perhaps the similarities between ME and long COVID patients may finally bring about change.

Medicine has a long and sorry history of bias and discrimination on the basis of sex. Given that ME and other functional and medically unexplained disorders are known to be much more prevalent among women, it is not surprising that patients with these conditions routinely report receiving poor treatment and even abuse at the hands of the healthcare system.

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Molly’s Last Ride

In January 2021, after a sleepover with her best friend, 12-year-old Molly Steinsapir got onto an e-bike in her Los Angeles neighborhood, crashed, and died. Who was responsible for the tragedy? Molly’s parents have sued Rad Power Bikes, a popular e-bike manufacturer. Author Peter Flax examines the thorny legal questions at the heart of the lawsuit and illuminates the potential pitfalls of the e-bike industry’s explosive, largely unregulated growth, in part by speaking with other Rad Power Bike users who, like Flax, have experienced worrying equipment problems:

I started talking to my neighbors. During the pandemic, hundreds of teenagers in my community took to the streets on RadRunners and other inexpensive DTC e-bikes with mechanical disc brakes, and I discovered that many of them were having similar issues. Some parents were clued into the problem and were either scheduling regular maintenance with local shops or learning how to make the fixes at home, while others had no idea that their kids were riding heavy electric bikes that couldn’t stop properly without frequent maintenance. I started a thread on Nextdoor with a summary of the problem and how to address it, and soon I was DMing with parents who wanted tips on barrel and caliper adjustments.

One of my neighbors — his name is Ezra Holland and he lives about five blocks from me — says that almost immediately he started noticing disturbing braking issues with the RadRunner he purchased early in 2022. Two or three weeks after he got it, Holland, an experienced road cyclist, noticed that the responsiveness of the brakes was poor, and he decided to remedy the problem by tightening the cables that run from the levers to the calipers. But he learned that this only bought him a few weeks, and that after tightening those cables a few times, one of the calipers clicked into a different position where there was zero braking action. “That is pretty scary,” he says.

Thus began a year of education, vigilance, maintenance, and communication with Rad. Holland now buys pads in bulk on Amazon; he checks and adjusts both calipers every two weeks, always on alert for a failure. He’s experienced the rear brake fail going downhill and is especially concerned about that happening while his 17-year-old is using the bike. Rad has sent him new brakes and new pads, but Holland says that in his ongoing phone calls with the brand, customer service reps and supervisors have told him that other customers aren’t experiencing braking issues like he has. But he alone knows a half dozen friends and neighbors struggling with the same problems. “I just got to a point where I started questioning my own thinking, because they keep saying I’m wrong,” he says. “I start thinking that maybe I’m just making a fuss here for no reason. Which I think is not fair, because I think it’s not true.”

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What We Search For

In 2013, Matthew Greene went missing while climbing in California. In researching the story of his disappearance, Jason Nark attempts to come to terms with his own grief over a dear friend’s suicide. This is a moving and ruminative piece on what it feels like to mourn after an event you’re powerless to prevent, and what it feels like as you give yourself permission to begin healing.

He didn’t tell anyone where he was going that day and never returned.

Anthony died on September 23, 2013, a few months after Matthew Greene disappeared.

Grief, we’re told, has distinct stages. We expect to pass through each one, like a doorway, from denial all the way to acceptance. I expected that too. As the months wore on, a sense of guilt metastasized inside me. Friends and family said I tried my best with him. I had no special power, they said, to keep him alive. I rejected those words and turned inward. Grief warped my ability to love, and to accept it, too. I spent a lot of time in bed, barely present with my kids. I sobbed in my car during commutes.

The flower I took from the Minaret trail was wilting on my hat. The colors still blazed burnt orange but it would never be this bright, this beautiful, again. So I left it there, draping it over the post at Matthew Greene’s campsite, and said goodbye.

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New Yorkers Never Came ‘Flooding Back.’ Why Did Rents Go Up So Much?

Ever question why your rent is so high? Lane Brown did, but instead of just wondering, he went on a mission to find out why. Carrying out meticulous research, he discovers that landlords may not be playing fair. An essay that teaches you not to just accept the status quo.

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Is Anyone Ever Well?

At Lux, Natalie Adler discusses two new books about disability: Health Communism by Beatrice Adler-Bolton and Artie Vierkant, and The Future is Disabled by Leah Lakshmi Piepzna-Samarasinha. Both books, Adler explains, “share the underlying assumption that capitalism makes us sick.” Adler surfaces a number of interesting points that the authors lay out in Health Communism, like how we’re conditioned to view health as an end goal — something we could one day have, namely by paying for it — and disease as something temporary, or repairable with money. “I’ve come to realize that the bifurcation between the sick and the well, the disabled and the able-bodied, is capitalism’s intervention,” writes Adler. “In reality, there are just bodies, just us.”

Likewise, in The Future is Disabled, Piepzna-Samarasinha urges us to look beyond the binary between sickness and health, but is also focused on the mutual aid, community, and connection between disabled people and disability activists. “Disabled people are already weathering the end of the world and are keeping each other alive,” writes Adler, “and so disabled knowledge and skills are exactly what we need to survive the future.” Adler goes on to say that both of these books challenge us to view everyone’s lives as vulnerable. Only then can we overhaul, and adapt to, an unjust system.

We now live in a time where we could deal with or even cure many of our ailments, but we are priced out of care or don’t have the time to access it — or we choose not to seek it, because interacting with the medical establishment can be a degrading experience, marred by medical racism and sexism and ageism and homophobia and transphobia and fatphobia and more. So perhaps it’s more accurate to say that capitalism keeps us sick.

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Finding Awe Amid Everyday Splendor

What is awe? And can experiencing awe lead to a happier, healthier life? Henry Wismayer spends time with Dacher Keltner, a Berkeley psychology professor at the forefront of a scientific movement examining our least-understood emotional state. I’ve appreciated Wismayer’s contemplative essays on other subjects, especially travel and tourism, and this profile-reported essay hybrid is yet another thought-provoking read. It’s informative but not dense, and I came away from it fresh, open-minded, and ready to experience the day’s small wonders.

Out of this trove of 2,600 personal narratives, the team at Berkeley distilled a definitive catalogue of awe’s elicitors. Keltner dubbed them “the eight wonders of life.” The most common source of awe was the moral beauty of other people, such as witnessing instances of compassion or courage. Also prevalent was “collective effervescence,” the sense of transcendent unity we might feel at a sporting event or when dancing in unison with others. Then came two predictable ones: nature and music, to which was added a third aesthetic stimulus, visual design. The last three could be lumped together by those of a romantic disposition as matters of the soul: spiritual awe, life and death, and epiphanies, like Archimedes’ Eureka moment, or the Damascene conversion of St. Paul.

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CU Boulder enrolled alleged white supremacist with knowledge of his past

When flyers began appearing around the University of Colorado Boulder, announcing that an enrolled student with ties to the white nationalist group Patriot Front, the campus’s independent student newspaper took notice. It secured an interview with the student, Patryck Durham, who admitted to being affiliated with Patriot Front and to publishing social media posts encouraging the killing of immigrants and Black people, but said UC officials were aware of all this before he enrolled and that it was “in the past.” Within hours, the story had taken a turn:

Durham did not definitively say whether he still held the violent beliefs that appeared in his social media posts, which were published in 2021.

“I can’t put an exact date on it because a lot of this stuff is messy. But it’s been, I think, a year or more by now,” since he was last affiliated with Patriot Front, Durham said.

Early Thursday morning, Jan. 26, several hours after Durham spoke with reporters for this story, the University of Colorado Police Department (CUPD) responded to reports of suspicious activity in Durham’s residence hall. 

According to police records, officers found Durham with two people that police described as “older friends from Longmont,” just before 2 a.m. Durham failed to clarify to law enforcement how he knew the two individuals in his room, and witnesses told police they felt uncomfortable with the presence of Durham and the other adults. 

One of the witnesses told police the pair of older adults were part of the white nationalist group Durham has been affiliated with. The two individuals were “told to leave the building” and did, according to police records.

According to the police report, witnesses also saw Patriot Front messages and propaganda on Durham’s laptop. Witnesses told police Durham was communicating with members of the hate group through the messaging app Telegram. 

Sources who described the encounter to the CU Independent and The Bold did so on the condition of anonymity, as they were worried they would be harmed for coming forward. People familiar with the incident said Durham returned to the dorms the next day, Jan. 27, to move out.

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