Search Results for: cancer

On Silence (or, Speak Again)

Illustration by Homestead

Elissa Bassist | Longreads | August 2019 | 26 minutes (6,529 words)

He knew I’d write this. He said so years ago. He was a well-known author and editor — at least in certain major cities — and I was an unpaid volunteer for his literary magazine.

I remember we were at a mutual friend’s book party when he told me what I’d do: that I would, one day, “take him down.” Six thoughts banged into my mind: 1. He thinks the worst of me. 2. So he admits he’s done something to me and to others worthy of a public takedown. 3. He knows I am so desperately hurt that I would expose him. 4. How much dirt does he think I have? 5. This is why I shouldn’t go to parties. 6. I won’t be the one to take him down; he’ll take himself down, eventually.

I’ll show you!” began the imaginary one-sided conversation I had with him later that night when I was alone in my apartment. “I’ll never say one word! To anyone! About anything!”

It was an effective silencing technique.
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Pot Luck

Juan Camilo Bernal / Getty, Illustration by Homestead

Livia Gershon | Longreads | July 2019 | 8 minutes (1,983 words)

Last month, shareholders of Canopy Growth, the world’s biggest cannabis company, agreed to a proposed merger with Acreage Holdings, the largest weed business in the United States. The deal, worth $3.4 billion, will take effect if and when the drug becomes legal at the federal level in the U.S., creating a massive international player in a rapidly expanding, newly legal industry. Meanwhile, as The Intercept reported, Fate Winslow, a homeless black man who sold $20 of weed in 2008, remains in prison on a life sentence, under Louisiana’s three-strikes law. Winslow is confined to a dorm with more than 80 other prisoners, double-bunked with no air conditioning in the heat of the Louisiana State Penitentiary.

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In a World Full of Cruelty and Injustice, Becoming a Mother Anyway

LAPI / Getty, Illustration by Homestead

Eliza Margarita Bates | Longreads | July 2019 | 26 minutes (6,506 words)

“How are you doing, emotionally?” the nurse asks. Her name is Yanna and she has given me her cell phone number so I can call her any time I need anything. Her voice is young and gentle. She knows everything about me — my illnesses, physical and psychiatric, my dosages of prednisone and Paxil, my weight. It’s all in my chart.

“I’m OK,” I say, not really knowing.

I’m in a drugged haze. I can’t stand up all the way, so I am leaning on Jacob, hunchbacked, as Yanna guides us to the elevator. I swipe my wristband to make the elevator come and we ride it down one floor. I follow the procedure outlined in a video that plays on loop for washing my hands, up to the elbow, slowly, slowly, before going through the double doors. When I walk into the room, I am confused. Glass boxes are scattered about, beeping, arranged seemingly without order or symmetry, but with enough space in between to allow for privacy. It takes me a moment to I realize that in each of the boxes, under wires and flashing monitors, is a baby. I start sobbing. Jacob holds my elbow to keep me upright. Yanna rushes over with a tissue, and then leads us to our own glass box.

***

At Auschwitz there is a snack bar, a vending machine, and sort of bookstore/gift shop where they sell postcards. It is a total mindfuck.

Here, you can see tourists taking photos of the former gas chambers; here, a mountain of eye glasses removed from the faces of children, mothers, grandparents, and the jerk who lived down the street before one and all were sent to die together in the gas chambers. And, here, a little way away, you can purchase a candy bar or a stale, shrink-wrapped pastry to munch on while you browse books on Nazi doctors performing experiments on disabled children.

Or you can buy a postcard. “Hey, Ma. Thought you might like this picture of a death camp. It made me think of you and, you know, being Jewish.”

Of course, I buy a postcard. How could I not? I buy three, actually. I don’t send them. I tuck them into the spine of a notebook and misplace them after my return. I buy the one with a photo of the arch that says, “Arbeit macht frei,” work will set you free. The other two, I don’t remember. I think one is of gas barrels, and another may be of starving survivors after the camp is liberated.

I hadn’t planned on going to Auschwitz. Too dark and depressing. And there so many other genocides and atrocities to learn about closer to home. But then the election happens just a couple weeks before we leave for the trip and, like buying the postcards, it seems like something I can’t not do while in Poland. I have to see where all of this could be headed.

My husband Jacob is performing at a jazz festival in a town called Bielsko-Biala. I join him there so we can take advantage of the free hotel and free ticket to Europe. I don’t see much of the town because our hotel is on the outskirts and the bone-chilling November air doesn’t inspire exploration. We are less than 45 minutes from Auschwitz.

The hotel has a casino on the second floor, a glass elevator, and a mirrored lobby. To the left of the elevator there is a restaurant and bar. In the restaurant, along with the rest of the band Jacob is touring with, we drink vodka and eat borsch on our first day in Poland. We can’t stop nervously making Nazi jokes. We all feel a little on edge being here, where the largest population of Ashkenazi Jews once lived, the site of Hitler’s most efficient genocide.

“Excuse me, waiter,” one of the Jewish band members says, after a couple rounds of vodka, raising his arm up in a mock Nazi solute, then pulling it down with his other hand. We titter and drink. The Polish waiter has his back to us and thankfully doesn’t see.

Jacob is in rehearsal all the next day. I am left alone with nothing to do. So I go to Auschwitz.
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Shared Breath

Illustration by Homestead

Caitlin Dwyer | Longreads | July 2019 | 20 minutes (5,624 words)

 
It was late afternoon in Virginia, humid but not too hot. The Hampton River rippled with a light breeze, lifting skirts and blowing ties. Guests sipped their beer and swayed a little — the way one does when watching a slow dance, unconsciously mimicking the movement of other bodies — as Chris Nalley led his mom on the floor. His bride stood nearby, red-gold curls framing her face, watching her new husband with a smile. Chris looked poised, in control of the dance, as a man looks when a long-awaited moment arrives and he steps confidently into its shape. A moment later his mom stepped away, and he gestured toward another woman standing nearby, a blonde in her 40s.

“Who’s that?” I asked my husband, who grew up with the bride.

“It’s his donor mom,” he whispered back.

Vicky West stepped into Nalley’s arms and laid her ear to his chest. Inside she could hear Nalley’s breath. The warm Virginia air moved through two lungs donated by a boy named Hans, who died of a brain aneurysm at age 20. West’s son’s lungs.

“I was like, ‘Oh my gosh, what if I have a breakdown in the middle of the dance floor?’” West recalls. She had brought her sister and her best friend to the reception to help her prepare for the emotional moment. “I’m never going to dance at my son’s wedding, and he’s my only child. They gave me something that I never thought that I would get.”

West and Nalley didn’t know each other when Hans died. For years after his organs arrived at the University of Virginia, on ice, to be inserted into Nalley’s body, they didn’t even know each others’ names. But over time, they’ve developed a relationship that is both tentative and incredibly tender. They consider each other family, but each of them worries about putting pressure on the other person to have a relationship. West thinks of Nalley as her own child in many ways, but she knows he has a life, a marriage, his own separate identity. Nalley struggles with survivor’s guilt, knowing that Hans died and he is here. He refers to the lungs as not his own, as if they were foreign objects inserted into his body, which medically, in some ways, they are. Both Nalley and West are passionate about organ, tissue, and eye donation and the gift of connection and continuation it provides — even as it accompanies, inevitably, great grief.

* * *

“The science behind how I have these lungs, and they’re not mine, and they’re hooked up like you change a pipe under the sink — you know, switch the plumbing out — is just amazing,” says Nalley. As the recipient of two separate lung transplants, most recently from West’s son, Nalley has a healthy awe for modern medicine.

Complex medical procedures can seem to the layperson almost magical. We can snip out someone’s heart, put it into someone else’s body, and it starts beating. We can graft tissue and replace corneas. We can sustain heartbeats and blood pressure using complex machines, which loop the blood out of the body, oxygenate it, and feed it back in. These procedures come with great risk, but at least they are possible. For most of human history, the things that killed us just killed us. Now, with the help of machines, doctors, and humans who give pieces of their bodies to complete strangers in death, we can live longer, healthier lives. As modern people, we exist not only as ourselves any longer, but as the interconnections between various humans and technologies.

This is true for most people who have faced a medical crisis and relied on a network of humans and machines to save them. In such a crisis, the boundaries of identity become more permeable and the sense of self expands. Organ donation brings this node of connections, this strange, nebulous feeling of trust and gratitude, into sharp focus because of the physicality of the connection: Those who have received a donation literally carry the DNA of the other person inside them. Sometimes recipients also become invested in relationships that nurture, honor, and remember the donor, and they find a relationship with the donor’s family and identity. Communicating can help all sides make sense of a complex, emotionally challenging situation. In some cases, the recipient never learns about the donor and comes to accept these new body parts as their own, creating a new sense of wholeness as they heal.

It wasn’t that long ago that the idea of cutting someone’s lungs out and surgically implanting them in someone else’s body would have been absurd. Just 175 years ago, doctors used ether anesthesia for the first time. The first successful kidney transplant was only 65 years ago. It wasn’t until the 1980s that the first successful lung transplants took place. In 1986, the date of the first successful double-lung transplant, Chris Nalley was 6 years old.

* * *

I was 17 years old when my parents announced that we were going on a 10-day silent Buddhist meditation retreat. Despite initial doubts, I ended up enjoying it: long quiet walks around the UC San Diego campus, tasty vegetarian meals, morning meditations rung in by a bell. I especially remember our teacher. At the time, I thought of him as a brown-robed, slow-talking old man. After almost two decades of meditation practice, I now know him as Thich Nhat Hanh, a renowned Zen teacher and peace activist.

Toward the end of the retreat, he sat onstage in front of a line of candles. Cupping one hand to protect the flame, he lit a candle, then blew out the match. He used the first candle to light a second. He used the second candle to light a third. And so on. Then he gestured to the last candle and asked us whether the flame in this final candle was the same flame that had lit the match.

As modern people, we exist not only as ourselves any longer, but as the interconnections between various humans and technologies.

I didn’t understand that demonstration until many years later, when I became a mom. At one day old, my son was hooked up to a ventilator, unable to breathe on his own, heavily sedated with morphine. The doctors said he had holes in his lungs, and they suspected brain damage as a result of oxygen deprivation during labor. As a newborn, my son was not eligible for a transplant. We could only watch and wait to see if his lungs healed.

Standing over his crib, my hand on his softly moving chest, I understood how the self could transfer into another body and also be separate. This tiny creature had been inside me less than a day ago, and now struggled to breathe on his own. He still felt like a part of my body that had been recently extracted on an operating table. I had a thick, puffy scar across my abdomen where they’d pulled him out, and I could see the dimpled chin he’d inherited from me, the same chin I had inherited from my father, beneath all the plastic tubing.

“We think of our body as our self or belonging to our self. We think of our body as me or mine. But if you look deeply, you see that your body is also the body of your ancestors, of your parents, of your children, and of their children. So it is not a ‘me’; it is not a ‘mine,’” writes Thich Nhat Hanh in Lion’s Roar, a Buddhist magazine. “Your body is full of everything else — limitless non-body elements — except one thing: a separate existence.”

Buddhists call this lack of separateness “no-self.” It’s not a denial of our existence, but the acknowledgment that we exist only in relationship, in community, in continuation. In my family’s experience with the health care system, I saw how fragile our bodies are, how quickly they can come to rely on others for survival. When my son got sick, I stopped seeing myself as an isolated individual, a person who makes individual choices and suffers individual consequences. Instead, I saw the ways in which bodies are made up of both personal characteristics and the myriad influences of their environment, carrying with them the DNA, the traumas, the bacteria, the gifts and generosities of other people. We carry our parents, but also our doctors, nurses, teachers, organ donors: All these people flicker in us, tiny, guttering lights shielded from the wind by cupped hands.

* * *

The last thing Nalley remembered, it was January. He’d been arguing with the doctor. He needed an antibiotic for pneumonia, but as a manager for a busy shoe store, he had used up his limited days off and had to get back to work. He remembered getting angry at being detained. He remembered yelling a little.

Now as he looked out the hospital window, unable to move, heart racing, he saw leaves on the trees. It was May.

Nalley panicked. He had been asleep for five months. His heart rate and blood pressure shot up, and the staff surrounded him, trying to calm him down. They gave him something and he slipped back into sleep.

They woke him a few times, until, gradually, he understood what had happened. Admitted to the hospital in January 2005 with pneumonia, Nalley had become angry when the doctor told him he would be there at least a week. “I just wanted to go home and go back to work the next day,” he says. Eventually, he had fallen unconscious from lack of oxygen. He was intubated, given a tracheotomy, and placed in a medically induced coma for months while his lungs fought off the infection.

Nalley had been in the hospital a lot. He was born with cystic fibrosis, a chronic, progressive disease that gradually impairs lung function. The disease typically worsens in late adolescence and early adulthood, just as a person’s identity begins to crystallize. Infections like pneumonia become more common, leading to long-term antibiotic use and complications. While treatments are available, there is no cure.

When he had learned to walk and eat again after months of muscle atrophy, Nalley went home, still dependent on supplemental oxygen. Anytime he went outside, he carried portable oxygen tanks with him. “So much oxygen would flow out of the tank that it would burn your nose,” Nalley recalls.

Running errands became a negotiation of time versus liters. He could carry smaller oxygen tanks, each of which lasted about four hours, so he had to think ahead: If he got caught in traffic and ran out of air, he could get sick from oxygen deprivation. “I felt like an astronaut,” he says.

Being in his early 20s, all he wanted was to go to bars, hang out with friends, and flirt with girls. Instead, for a year and a half, his day-to-day life became a dull routine of television, computers, and forced social interaction. As his lung function declined further, doctors offered Nalley an opportunity: He could get on the list for a lung transplant.

* * *

When a potential organ or tissue donor dies, several teams kick into immediate action. For a case like Nalley’s, there are two surgeries: the donor and the recipient. First, the donor’s lungs are removed, a process that involves stapling shut the major vein and artery that take blood to and from the lungs, as well as closing off the bronchus, the main passage through which air passes. The organs are cut out, treated with blood thinners and preservation solutions, checked to make sure they don’t have too much fluid or any signs of infection, and kept cool.

“You want to be ready to sew the lung very close to the time it arrives,” explains Frederick Tibayan, a surgeon who heads the advanced heart failure and transplant program at Oregon Health and Science University. That’s because “when the lung or lungs have been removed from the donor’s body, it’s no longer being perfused with blood that is giving it nutrients and keeping that organ alive.” So while the lungs make their way to the recipient, possibly from another hospital or city or even state, in haste, another team of surgeons preps the recipient.

It’s a “highly coordinated dance,” says Sarah Kilbourne, an assistant professor of medicine at the University of Virginia who works on Nalley’s care team. A nationwide computer program matches organs by blood type to the highest-priority recipient waiting for a donation. This happened in 2006, and again in 2013, when Kilbourne got a telephone call saying there was a lung available for Nalley. Both times, Nalley got to the hospital as fast as possible. In preparation for a potential procedure, he’d been trying to gain weight, doing physical therapy several times a day on his failing lungs, and keeping himself as healthy as possible for major surgery.

“I was gung-ho, let’s get this thing over with,” Nalley remembers of the first surgery. “In pre-op my parents were crying and I was, like, so ready to have this transplant. I was at the bottom of the barrel of life. Anything would have been better. Half a lung, one lung, a whole lung. Anything.”

Complex medical procedures can seem to the layperson almost magical. We can snip out someone’s heart, put it into someone else’s body, and it starts beating.

Nalley was having a bilateral transplant, which meant both lungs would be taken out. In this situation, the surgeons either do a clamshell incision, which involves slicing up the sides of the body and across the breastbone, or they simply divide the breastbone and open up the torso. They take out the worse-functioning lung first, again by stapling shut the bronchus and blood vessels and removing the organ, then sewing in the donated organ. “This is obviously stressful for the patient because they’re working on one lung. The heart is having to pump all the blood through one lung and having to work harder,” explains Tibayan. In around 25 percent of cases, the patient has to go on cardiopulmonary bypass, a machine that helps the heart handle the stress. Once the second lung is sewn in, the goal is to get the patient up and moving as fast as possible, to strengthen the heart and get the lungs working on their own.

“I tell people that after the first transplant, that first breath I took was the longest, deepest breath I’d ever taken in my life, and it wasn’t even … it was someone else’s lungs that were doing all the work,” says Nalley. He knew that a stranger’s body had been joined with his, letting him take these deep breaths. Generally, donors’ names and identities are kept anonymous. Nevertheless, the sense of breathing as or with someone else hits home for Nalley. “It messes with your mind, similar to thinking about how small we are in the universe. That the universe is so vast and then you think, there’s this part of me that’s not me … but I’m alive because of it.”

* * *

When Tibayan mentioned to me using a form of cardiopulmonary bypass called extracorporeal membrane oxygenation, or ECMO, in transplant surgery, I remembered what it looked like. The ruby blood in thick tubes. The sound of the nurses banging their fists against the machine to prevent clots. The way the patient is sometimes drugged up to prevent him from moving, so that the canula feeding directly into his carotid will not jostle and detach.

My son was on ECMO for 10 days. He was kept alive effectively as a cyborg, his vitals inextricably linked to the machine that kept him breathing — and to the nurses who monitored the blood as it circulated out of his body, and the doctors who checked for air leaking into his chest cavity. I remember the strange attachment to the machines that were keeping him alive, a simultaneous revulsion and tenderness for the care he received. Beside the high-tech instruments in the room, a small electric candle flickered in the window, near the cot where I or my husband slept each night. I had never imagined that parenthood would begin mostly as a vigil.

“Impermanence means being transformed at every moment. This is reality. And since there is nothing unchanging, how can there be a permanent self, a separate self?” writes Thich Nhat Hanh. “So what permanent thing is there which we can call a self?”

The son I have today exists as the confluence of machines and humans. Ten years earlier, the ECMO technologies and caregiver training wouldn’t have been in place to save him. In 2017, they were. He may not be attached to those devices any longer, but they resonate in him with every breath he takes. Most people who have gone through a major medical event understand that we emerge back into health connected to our caregivers and to the expansive web of lifesaving practices that make up modern medicine. My son is not a machine, but he is alive because of them.


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* * *

“I thought of my donor as a guardian angel type of figure,” says Katy Portell.

When she was 4 years old, Portell received donated tissue to repair a faulty valve in her heart. She grew up aware of her heart condition, but not very engaged with her donor. He was a mysterious figure, rather abstract. As she grew up and became more involved in organ donation advocacy, she realized a hard moment was coming: “I knew that I would have to be ready to face the reality that there was a person on the other side whose life was cut short, who was meant for something more.”

Portell, who is the organ donation ambassador coordinator for NHS Blood and Transplant in the United Kingdom, took a series of extraordinary steps to discover her donor’s identity, more than 20 years after the tissue transplant. First, she had to find her organ procurement organization (OPO), a group that acts as a bridge between the recipient and donor hospitals. Because it had been so long, she had to get in touch with the surgeon who had done her transplant many years before. Once she found the OPO, she wrote a letter, using guidelines from a transplant coordinator; the letter was scrubbed of identifying information and sent to the OPO, who reached out to the donor family: Would they be willing to receive correspondence?

When she received a letter, she couldn’t wait to open it. Photos of a young boy spilled out of the envelope. “That was the moment when everything became very, very real, because suddenly there was a real person who had died,” says Portell. “That was devastating.”

Her donor was P.J., an 8-year-old who had been hit by a car while riding his bike. “He loved Indiana Jones, was obsessed with secret codes, and wanted to be a jet pilot or archaeologist when he grew up,” says Portell. He also made an extraordinary choice; he had told his mother he wanted to be a donor in several conversations during his life. Portell’s sense of guilt and gratitude was crushing.

She corresponded with P.J.’s family for about six months before she felt ready to meet. “I had a fear that was, frankly: Will they like me?” It’s a strange pressure, to carry a piece of someone’s son’s heart in your body. She had to carry P.J., too. She had to channel his spirit, and to live in a way that felt worthy of his choice to donate.

She thinks of him now like a big brother. When Portell applied for her current job, she emerged from an interview and felt confident about her chances. She walked the streets of London imagining P.J. walking beside her — not as a child, but as a man. She imagined high-fiving him. “I was strutting down the sidewalk and saying, ‘We did it,’” she says. “Nothing I do is without him.”

Portell met P.J.’s parents on New Year’s Eve 2016. Their first meeting was captured on video. It’s impossible to watch without crying: Portell running into the arms of P.J.’s mother, burying her head in her neck. They sit together, laughing, weeping, sharing photos. “You have fulfilled my child’s dreams,” P.J.’s mother says to Portell. “How could we be anything but proud?”

* * *

Not everyone meets their donor family. Although it is becoming more common, largely thanks to social media, Portell says, it’s a mistake to assume everyone is willing or ready to make that connection.

Tom Martin does not know his donor. He received a heart in 2013, after many years of heart failure eventually left him hospitalized. Disqualified at first from receiving a transplant because his doctors suspected he had precancerous cells, he fought to stay on the transplant list. He wanted to see his youngest son grow up. Martin had family and friends write letters to the hospital’s transplant program, proving that he had a network who would support him in recovery. When a heart became available, he was rushed to Oregon Health and Science University; he posted on Facebook before the surgery: They found me a heart! Then he went under. He doesn’t know whose heart he received, and he doesn’t want to know.

“I was freaked out. I felt weird about waiting for somebody to die,” he says, now six years out from his transplant. He chokes up as he continues: “I knew it wouldn’t be nice. It would be a young person in an accident, or a suicide. That was the only part I hated.”

It’s hard to get an estimate of how many recipients end up meeting their families. Because each OPO operates independently (there are 58 in the United States), nationwide statistics are tough to track down. Current estimates hover around 50 percent, a much higher number than in previous decades. For tissue recipients like Portell, meetings are even rarer, as the donor’s tissue is often donated to multiple people. Meeting the family “should be an option,” says Portell, but she cautions against expecting a close connection.

* * *

Nalley resisted meeting his donor family for a long time. After his first transplant, he started running races, first an 8K and then half-marathons, testing out his new lungs’ capacities. He joined recreational sports leagues in Richmond, where he met his future wife, Martina. The freedom of being able to move where and when he wished was exhilarating. Finally, he could be a normal young man: “I’m going to spend an all-nighter at a girl’s house. Or go out with friends in Richmond and not have to worry about being home at a certain time,” he says. “Literally the tether was gone.”

A few years after his first transplant, in 2011, Nalley was competing at the Transplant Games of America, an Olympics-style series of events. A donor mom was helping to organize one of the events, and she pushed him to connect with his donor family — but the thought of communicating seemed like an imposition. “If I contact them and they’ve already put closure to this tragedy, am I just going to be pulling a Band-Aid off?” he wondered. “I didn’t want to disrupt someone’s life.”

Eventually he did write, and he met Terri, whose son Ryan had been in an accident at age 16 and donated his lungs, kidney, and heart. Nalley and Terri became close. They went for brunch and dinner regularly, and ran a 10K together. “We just kind of connected,” says Nalley. “The first time we met, I gave her this great big hug and she put her head to my chest and listened to me breathe.”

In 2013, just two years after they connected, Terri died. But Nalley missed her funeral. He was back in the hospital, getting another double lung transplant.

* * *

A transplanted organ or tissue never quite gets used to its new home in the recipient’s body. Although the organ or tissue can function well for many years, recipients have to take immunosuppressant drugs to keep their bodies from rebelling against the donation. Organs can be rejected by the immune system immediately, which is called acute rejection; the more insidious problem is long-term rejection, in which the body slowly begins to kick the organ out. That happens because the immune system doesn’t recognize the antigens, or foreign proteins, in the organ.

“Unless it’s being suppressed, the foreign proteins are recognized as ‘not-self,’” says Tibayan. “That would normally start a cascade of responses that is usually reserved for a viral infection, and so to keep that from happening, at the very least to slow it down from happening faster, patients have to be on immunosuppression.”

This can be a tricky juggling act for the care team, who — unlike most other surgeons, who are in and out of the patient’s body — work with a recipient for the rest of their life. Lungs are exposed to the outside world, to all the cold viruses and smoke and fungal spores that float around in our air. While most pathogens won’t bother a healthy pair of lungs, says Tibayan, people who are immunosuppressed are less likely to fight them off.

Even when the immune system accepts donated organs, it can take time for the recipient to mentally identify them as their own. For a long time, Martin carried a sense of “not-self” about his heart. “I had always thought I had this other person’s heart in me,” he says. Then, a few years after his transplant, he attended a music performance where the composer asked the audience members to listen to their breathing and heartbeats as part of the show. “I’m a super straight Lutheran. I’m definitely not woo-woo,” laughs Martin, but he closed his eyes and joined the visualization.

“I was kind of picturing our cells, and how they’re kind of like fish, like little waves. And I was picturing my body and all the waves going one way, and my heart going another way, like it was separate from me. And as I was sitting there,” he pauses, “they lined up.”

From then on, it was his heart.

When working with new recipients, Kilbourne asks them to take ownership of their new organs: “Those are your new lungs,” she tells them. And yet Nalley never felt that his lungs were quite his; they were always Ryan’s. And around 2010, his body started to reject them.

Chris got sicker. He went back on the transplant list, hoping for another call.

* * *

“There is no guidebook for this,” says Portell. “I wonder every year on the anniversary of P.J.’s death, what do I do?”

Portell always celebrates P.J.’s birthday. She imagines him as he would be now: a grown man in his early 30s. She imagines him going out with friends to a pub in London. But during his last birthday, she wondered if that was really the right thing. She texted a friend, asking for a change of plans. They stayed in, ordered a pizza, and watched Indiana Jones.

“It’s something P.J. would do,” says Portell.

When I asked her if she feels like she enacts his personality, if some part of him lives in her, she hesitates. She wants to talk about P.J., not herself. Sometimes the line between them gets blurred, and other times it seems so clear. “Every once in a while I think …” she trails off. This deep intimacy that recipients feel with their donors was hard for them to describe. It was self, and it was not-self. It was both.

We carry our parents, but also our doctors, nurses, teachers, organ donors: All these people flicker in us, tiny, guttering lights shielded from the wind by cupped hands.

For donor families, this distinction can often be hard to navigate. West doesn’t want to take her relationship with Nalley for granted; she tries to give him space. “I’m so thankful and blessed that he’s willing to be a part of my life,” she says. She creates mental barriers for herself because, given unlimited access to Nalley, she says she would treat him like her own child.

For Nalley, the boundaries are less important. “I guess she’s afraid to mess up the donor dynamic by involving herself,” he says. “But I’m like, ‘We’re family. I have your son’s DNA in me.’”

* * *

Robert Bartlett is an average-looking older white man: combed gray hair, a large nose, a University of Michigan lab coat. He has a long and well-funded career of medical research, and he’s famous for one thing in particular: pioneering the use of ECMO in children.

Heart recipients like Martin usually spend some time on ECMO or a similar technology. Basically, the blood is drained out of the right side of the body, goes to an oxygenator, then is pumped to the other side of the body to provide circulatory support. It’s used for bypass in heart surgeries and, in some cases, for lung transplants as well.

Bartlett began using ECMO to treat acute respiratory failure in infants in the 1970s. Until around 10 years ago, it wasn’t very effective, says Tibayan; recent progress in both training and technology have greatly improved outcomes. In other words, fewer babies die.

My son is not a machine, but he is alive because of them.

When I search for Bartlett on Google and find his picture, I start to cry. I’m never going to meet this guy, but he saved my son’s life.

Staring at his picture, I feel strangely connected to him. My son is alive because Bartlett is alive and because Bartlett chose to study medicine and chose to research this specific machine and because people in the past decade have been trying to improve ECMO so that fewer babies die. It is very difficult to describe that level of gratitude, to explain how my son is his own individual self, a happy little boy with no memory of being on ECMO, and that he also owes who he is, at least in part, to a gray-haired man from Michigan.

ECMO is now being investigated for use in ex vivo lung perfusion, a process that essentially keeps donor lungs healthy and oxygenated during that key, quick transfer window between donor and recipient. It’s being considered for use in keeping alive a brain-dead patient with healthy organs, so that those organs might go to people who need them. According to the University of Michigan, where Bartlett’s lab conducts research, “ECMO is very good at treating acute lung disorders. But it can’t help patients with chronic progressive lung diseases like COPD, pulmonary fibrosis or cystic fibrosis. Eventually these patients are left with just one option: a lung transplant.”

* * *

Nalley’s second transplant — the one where he received Hans’s lungs — was complicated. Usually a patient leaves the ICU within a week and starts physical therapy, but Nalley had a lot of scar tissue to cut through from his first transplant. His body didn’t recover from the surgery as quickly.

“He had some bleeding in the areas around his lungs after the transplant, and he had an infection, so he was in the ICU for a much longer time,” explains Kilbourne.

Cystic fibrosis patients, who are often young, are good candidates for retransplant. The care team evaluates a retransplant based on survival rates. According to recent studies — with extremely small sample sizes, considering how few people receive retransplants each year — the one-year survival rate of a pulmonary retransplant is around 71.5 percent. The five-year rate is about 34.5 percent. Nalley’s lungs are on year six.

“They told me the only reason I did it is because I’m stubborn and that stubbornness pushed me through the after-transplant process,” says Nalley, laughing. But he’s serious: The likelihood that the lungs will be put to good use, and that the patient will live a long life, is one thing the care team considers when looking at transplant recipients. Donated organs are a scarce resource; to give someone a second pair of lungs is to take them away from someone else. The team wants to be sure the recipient will be able to use those lungs as long as possible.

Nalley isn’t messing around with his time. He knows he may someday need another set of lungs, but he’s not sure he’ll get them. He lives in Richmond with his wife and two dogs, and they travel a lot. They’ve been to Lebanon, Thailand, and the Caribbean. He chats with West at least once a week. He got a tattoo sleeve that shows a pair of lungs with the words Donate Life.

* * *

The choices of others — to pursue medical training, to serve in the health care field, to give the body to others in death — are choices that we ourselves do not get to make, but they have a profound effect on our survival. In her book On Immunity, essayist Eula Biss describes how medical decisions are often thought of as individual acts, yet they have powerful consequences for entire communities. “We have more microorganisms in our guts than we have cells in our bodies — we are crawling with bacteria and we are full of chemicals. We are, in other words, continuous with everything here on earth. Including — and especially — each other,” Biss writes. She posits that a sense of interconnectedness should govern our health care choices; that we cannot live in a bubble, mentally or physically, because our bodies exist in relation to one another.

Anyone who has spent a lot of time being sick, or has had a family member who has been very sick, has a network. We build connections to keep ourselves whole. Our medical experiences become our emotional makeup, our belief systems, our anxieties, our literal bodies. Some of these connections we can’t control. Others we can. The choice to donate an organ can be a checked box at the DMV or a conversation with a spouse. You strike one little match with that action, then probably forget about it. But down the line, someone else may carry that fire inside them — a flicker that binds body to body, the hiss as the wick catches, becomes a steady flame.

***

Are you interested in becoming an organ donor? If you live in the United States, register today. If you still have questions, learn more about what it means to become an organ donor.

***

Caitlin Dwyer is a writer from Portland, Oregon. Her work has appeared recently in The Rumpus, Narratively, Creative Nonfiction, and Tricycle. She studied journalism at the University of Hong Kong, fiction at Pomona College, and poetry through the Rainier Writer’s Workshop.

Editor: Cheri Lucas Rowlands

American Green

Andy Cross/The Denver Post via Getty Images

Ted Steinberg | American Green | W. W. Norton & Company | March 2006 | 43 minutes (7,070 words)

 

Although there are plenty of irrational aspects to life in modern America, few rival the odd fixation on lawns. Fertilizing, mowing, watering — these are all-American activities that, on their face, seem reasonable enough. But to spend hundreds of hours mowing your way to a designer lawn is to flirt, most would agree, with a bizarre form of fanaticism. Likewise, planting a species of grass that will make your property look like a putting green seems a bit excessive — yet not nearly as self-indulgent as the Hamptons resident who put in a nine-hole course with three lakes, despite being a member of an exclusive golf club located across the street. And what should we make of the Houston furniture salesman who, upon learning that the city was planning to ban morning mowing — to fight a smog problem comparable to Los Angeles’s — vowed to show up, bright and early, armed and ready to cut.“I’ll pack a sidearm,” he said. “What are they going to do, have the lawn police come and arrest me?”

Surprisingly, the lawn is one of America’s leading “crops,” amounting to at least twice the acreage planted in cotton. In 2007, it was estimated that there were roughly twenty-five to forty million acres of turf in the United States. Put all that grass together in your mind and you have an area, at a minimum, about the size of the state of Kentucky, though perhaps as large as Florida. Included in this total were fifty-eight million home lawns plus over sixteen thousand golf-course facilities (with one or more courses each) and roughly seven hundred thousand athletic fields. Numbers like these add up to a major cultural preoccupation.

Read more…

Bundyville: The Remnant, Chapter Two: The Hunter and the Bomb

Illustration by Zoë van Dijk

Leah Sottile | Longreads | July 2019 | 25 minutes (6,186 words)

Part 2 of 5 of Bundyville: The Remnant, season two of Bundyville, a series and podcast from Longreads and OPB

 

I.

Bill Keebler dumps a sugar packet into his coffee and calmly explains that the government is after him. They’re always watching him — constantly surveilling his every move, he says. He’s even at risk here, inside a Denny’s attached to a Flying J truck stop, about a half hour outside Salt Lake City.

He’s also pretty sure that Bundyville producer Ryan Haas and I are federal agents, posing as journalists. “I’m gonna be honest with you, it wouldn’t surprise me if both of you pulled out a badge,” he says. 

Just after 4 p.m. on a frigid February day, Keebler, 60, shuffles toward the back corner table we’d staked out for the interview.  He’s about a half hour late, uttering his deepest apologies for getting the time wrong. He’s never late, he says. 

Keebler is a raspy-voiced Southerner with skin that looks brittle from working in the sun all his life as a horse wrangler, ranch hand, hunting outfitter, and construction worker. At Denny’s he’s wearing a sandstone-colored canvas work jacket, and his hair sprouts from underneath a khaki Oath Keepers hat, which covers a shiny bald spot on the top of his head. He smokes a lot. Drinks a lot of coffee.

 

Keep the characters of Bundyville: The Remnant straight with this character list.

On the phone a few days before, I told him that I’d read the court documents for his case and was surprised by what I saw. I wanted to hear his version of what happened in June 2016 on the day three years before when Keebler believed he was detonating a bomb at a building owned by the Bureau of Land Management, only to find that the bomb was a fake given to him by undercover FBI agents embedded in his militia group.

The bombing itself was shocking. But the part that surprised me at the time was that, despite having pleaded guilty, serving 25 months in jail, and being released on probation, most of his case was still under federal protective order. Keebler’s attorney told me he’s not allowed to say why. I’m at the Denny’s hoping Keebler might be willing to tell me anyway.

In reading about what happened that day in the desert with the bomb, I learned — through the few court documents available — that Keebler was close friends with LaVoy Finicum. He’s the rancher who was a leader at the Malheur occupation, in Oregon, and was shot and killed by authorities after fleeing from a traffic stop.

But before we can talk about that, we’ve got to calm him down. He nudges his head in the direction of a young waiter, walking in a loop around by our table. Under his breath, Keebler says, “We’re being watched.” 

“Right now?” I ask. 

“Yeah.” 

“By who?” 

“A fed or an informant,” Keebler says. 

Haas asks if he means the Denny’s server, who’s walking by to see if we need any refills on coffee. That’s the guy, Keebler says.

If there’s so much at risk, why meet us? Why tell your story?

“Because if I don’t it’s going to die with me,” he says. “I’ve been on borrowed time for years.” He says he survived cancer, a massive heart attack, and “four heart procedures, looking at a fifth.” That’s not to mention the other stuff — things much harder to believe but that Keebler swears up and down are real, like the federally organized hits on him by the gang MS-13 while he was behind bars.

So I assure him: I’m not a fed. Google me. And I tell him he’s in control of what he says. If I ask something he doesn’t want to answer, something he thinks might get him in trouble, he doesn’t need to respond. He agrees, and for three hours, Bill Keebler gives his side of what happened leading up to that day in the desert with the bomb — a version of the story in which he is the hero, the government is the enemy, and where America is so rapidly nearing its demise, he can almost taste it. 

***

In the three years since the Bundys mobilized a force to take over the Malheur National Wildlife refuge in Oregon, the world has morphed in ways I couldn’t have imagined. For one thing, Donald Trump became the president of the United States. He has increased his attacks on media, stepping up from calling the very newspapers I write for “fake news,” to neglecting to hold the Saudi Arabian government accountable for putting into motion the murder of the journalist Jamal Khashoggi.

In June 2019, Trump — in a meeting at the G20 Summit — laughed with Russian president Vladimir Putin about journalists. “Get rid of them,” he said. “Fake news is a great term, isn’t it? You don’t have this problem in Russia. We have that problem.” And Putin responded: “Yes, yes. We have it, too. It’s the same.” They both laughed. 

Oft-cited research collected by the Southern Poverty Law Center has shown that since 1996, anti-government activity surged when Democratic presidents were in office. Militia groups that claimed to see proof of tyranny thrived in the 1990s — specifically when Vicki Weaver and her teenage son were killed during a standoff with federal agents at Ruby Ridge in 1992, and when the feds stormed into the Branch Davidian compound in Waco, Texas, in 1993. 

In President Obama, the anti-government movement saw the embodiment of tyranny: someone upon whom they could project their worst fears. They called him a socialist globalist Muslim who, after ascending to the highest seat of power, would bring Sharia law upon the people. There was no proof or evidence to support this. But that didn’t matter to them.

Under Trump, suddenly, anti-government groups are pro-government. Nearly everything about Trump’s rhetoric — from questioning Obama’s nationality, to draining the swamp of elites, to building a border wall, to pushing for anti-Muslim legislation, to zealous nationalism — is lifted from the anti-government handbook.

“It blows my mind. The Patriot militia movement, anti-government movement — however you want to refer to them — under Obama was so concerned about tyranny and executive power … and yet they’ve been some of the most vocal advocates for Trump unilaterally grabbing and exerting executive branch power,” said Sam Jackson, an assistant professor in the College of Emergency Preparedness, Homeland Security, and Cybersecurity at the University at Albany-SUNY. Jackson researches the militia movement — he wrote his dissertation on the Oath Keepers. 

“If Obama had talked about declaring a national emergency … they would have been up in arms in a heartbeat,” he said.

So what gives? How do the anti-government go pro-government? 

“It makes it really hard to take them at their word,” Jackson told me. “It really makes it seem like all of that was just rhetoric that they deployed in pursuit of other goals that perhaps they perceived would be less popular amongst the American public — whether that’s Islamophobia or anti-immigration or whatever else they’re really interested in. It seems like perhaps now they’re willing to talk about these other things more blatantly than they were in the past.” 

***

Bill Keebler tells us he was born in Mississippi and grew up in Georgia the descendant of a long line of military veterans. During the Cold War in the early 1980s, Keebler says he enlisted in the Army and served in Aschaffenburg, Germany. There, he says, he was on the frontlines of the fight against communism. And it was also during this time — he claims — that he placed third in the 1984 World Championships in Kung Fu.

It’s clear that he’s not the guy he used to be — or at least that the person I’m seeing before me at Denny’s isn’t the fighter he is in his head. Keebler claims that, after winning that championship, he created his own style of martial arts, called “Jung Shin Wu Kung Fu” before a “board of masters,” but the Bundyville team wasn’t able to confirm this.

After years of working on farms and ranches, Keebler found himself in Utah — far, far from home — where he worked as a hunting outfitter, trained horses, and says he became a member of the Utah Oath Keepers. Around Tooele County, Utah, he was so well-known as an ardent prepper and varmint hunter that the Salt Lake Tribune ran a story on his coyote hunting skills. In one scene in the story, Keebler crouches in underbrush and wears camouflage that’s been drenched in coyote-urine scent. 

In 2011, he was running a hunting outfitting business called Critter Gitter Outfitters and often posted photos on social media of his excursions into the wild. In one, a muscled, tanned Keebler poses with a baby deer he’d rescued. 

Keebler spends a lot of time on the internet — has for years. Online, Keebler makes lots of dad jokes and even more jokes where a woman’s demise is the punchline. In one video he shared on his Facebook page, a blond woman in a white robe pleads with her husband until he hands her the keys of a black SUV with an oversize bow on the hood. When she starts the car, it explodes, the man smiles, and the words Merry Christmas, Bitch fill the screen. 

By 2013, Facebook had become a place for Keebler to vent about Obama — “I call him O-bummer,” he told me during one phone call — where he openly shared his belief in an encyclopedic number of conspiracy theories. “FEMA camps are everywhere, Muslims and illegals are taking over, Obama is the biggest Traitor this country has ever known, No Jobs, 16 trillion in [debt] and no relief in sight,” he wrote one February morning. “Anyone protesting Obama is assassinated and turned into a monster by our own media.”

None of this is true — his sources are websites that are notorious for generating fake content. His words dipped in and out of coherence, in and out of overt racism. “Our jobs have all gone over seas to other country’s as they get Fat off our money and we send them aid, weapons and anything else they desire for free. Jets, food what ever they want because we OWE it to them somehow,” he wrote in one such post. “I have been patient, tolerant and offended too much for any more. I am an American, have lived as I will die as my ancestors did, As A FREE MAN. I speak fucking English and you can press 1 and kiss my ass ya muslim, communist Jackasses! If this offends you then I have succeeded in my intentions.” 

He signed off on another post: “Stay safe, armed to the teeth, prepared and with God. Bill Keebler.”

Later that month, he wrote that “Someday SOON chit is gonna happen and this country will l;iterally EXPLODE, and when it does it will be a very messy situation… soon BOOM, we will explode. Hope you are prepared.”

Keebler hunting coyotes in 2011. (AP Photo/Al Hartmann – The Salt Lake Tribune)

By spring 2014, Keebler seemed to have a new personality altogether. He wrote near-constantly about what to do when SHTF (prepper-speak for “shit hits the fan”). He signed his posts “th3hunt3r.” He breathed in false information about the Bureau of Land Management killing endangered species and exhaled posts about the hypocrisy of not letting Cliven Bundy graze his cattle. 

Much has been written about the algorithms employed by sites like YouTube, which keeps users on the site — generating more and more advertising dollars — by directing them toward more extreme content. Reporters and analysts often reflect on how this affects young people. But the algorithmic drive toward extreme content has taken hold with a much older generation, too, with guys like Keebler. Online, they can fantasize about who they’ll be when the end finally comes. They water their ignorance and hatred at an online trough with others who think just like them.

In April 2014, Keebler sprung into action after seeing a video on Facebook of a confrontation between Bureau of Land Management agents and protesters who’d assembled at the Bundys’ side — that video I mentioned way back at the beginning of this story, of Ammon Bundy being tased in the midst of a chaotic confrontation. Keebler loaded up his camper and drove several hours south to Bunkerville, Nevada, where he says he set up a mess hall and provided supplies.

Well, I made it to the ranch, all is well, getting settled in, been intersting so far, and I aint shot no one, YET! lol” he wrote on his Facebook page on April 10 after he arrived. 

Once there, Keebler solicited money online to help pay for supplies. He claims he kept hot tempers under control. 

“I stopped some people wanted to shoot people,” he says to me at the truck stop. “One of them got mad about it and put a gun in my face. He wanted to start the war. … He said, ‘I’m gonna fire a shot just to get it started.’ … Things were that close. Volatile.”

Keebler also takes credit for ejecting Jerad and Amanda Miller — who would go on to murder two police officers in Las Vegas and die in the midst of a shoot-out with officers inside a Walmart. He claims that if it wasn’t for him, Bundy Ranch would have been a bloodbath. Less than a year later — according to Keebler’s defense attorney’s presentencing memo — an undercover FBI agent was embedded in Keebler’s own militia and then began to regularly talk about stepping into action, about blowing up federal agents and federal properties, and scouting a mosque as a potential target alongside Keebler. 

And yet, Keebler never kicked that guy out. 

 

II.

After the militias assisted in preventing the BLM from seizing the Bundy family’s cattle, Keebler left feeling excited about the movement. He lived on Bundy Ranch for about two weeks. “To me it was one of the biggest events in this country … short of the Boston Tea Party,” he says. “It was a wake-up call.”

“After the standoff and everything, we had momentum,” he says, offering his mug to the waiter for a refill. “It started because Cliven Bundy, but we started a movement that had the potential to be tenfold what it was.”

When he came back home to Utah, he quit the Oath Keepers. He proudly recounts a story about trading heated words at Bunkerville with the group’s founder, Stewart Rhodes. Keebler claims he asked whether Rhodes would accept “radical Islamic Muslims” into the group; Rhodes said the Oath Keepers doesn’t discriminate. Back at home, he started his own militia: Patriots Defense Force (PDF). 

At the height of its membership, PDF had just seven members including Keebler. They held “field training exercises” where they’d shoot targets. They’d talk about raising “backyard meat rabbits” and chickens, and living off-grid. Mostly, they were a bunch of preppers. 

But before PDF was even formed — even had a name — the FBI began to monitor him, according to court documents submitted by Keebler’s defense team. They began immediately upon his return home from Bundy Ranch. The Bureau eventually embedded three confidential informants in his militia and three undercover agents, including two men who went by the names Brad Miller and Jake Davis. Miller and Davis  — people Keebler believed to be other God-loving Patriots — were sworn into PDF in May 2015. Excluding Keebler, the FBI agents, and informants, there were — at most — three members of PDF. 

According to the defense, one informant was paid $60,000 for his undercover work inside the militia. The stories the FBI agents gave to Keebler must have seemed like he found a gold mine: Davis told stories of his expertise in hand-to-hand combat; Miller positioned himself as an expert in mining and explosives. Another FBI agent played the part of a successful business guy interested in funding a militia.

Unlike all the other times Keebler imagined the government conspiring to snoop on him, this time they actually were — but he was so focused on the “deep state” that he didn’t seem to notice what was happening right in front of his face. 

As the FBI surveilled Keebler, he frequently spoke about martial law. “Under marshal [sic] law, Mr. Keebler expected the federal government to turn against the people…” His attorney wrote in his sentencing memo, “He envisioned house-to-house gun confiscations and the government putting ‘undesirable’ and ‘unsalvageable’ people in FEMA camps.”

By fall 2015, Keebler was meeting with LaVoy Finicum. Finicum, too, had been excited by what he had encountered at Bundy Ranch: a group of citizens who believed in Cliven Bundy’s conspiracy theories about the federal government coming to get him. 

Finicum, after seeing Cliven Bundy successfully get away with shirking his grazing costs,  had recently violated the terms of his own BLM grazing permit — accruing fines for grazing his cattle out of season. Finicum spoke to Keebler about fortifying his property in case of a situation like Bundy Ranch — or maybe even Ruby Ridge or Waco.

“At the Bundy’s we got there after the fact. If we knew it was coming, we could be there prepared,” Keebler says. Finicum was expecting the same. He’d stopped paying his grazing fees after going to Bundy Ranch and assumed the BLM would come get him, too. “We were going to stop them from taking the cattle,” he says. “Now I don’t mean ambush assault and kill and shoot. None of that crap.” 

Keebler walks Haas and I through the plan: When the BLM came in, apparently the group planned to dig out the road the agents came in on with a backhoe — making it impossible for them to leave. Miller pushed for the group to instead explode the road, he says. Keebler said that was crazy, and the two traded words over it. 

The group, without Finicum, drove toward Mt. Trumbull, where the government says Keebler got his first view of a building owned by the BLM — the remote property that, months later, he aimed to destroy with a bomb. 

Over the course of our interview, Keebler mentioned several arguments with Miller. But he always let him stay. 

If he was so extreme, such a loose cannon, I had to wonder, why keep him?

Because Miller, Keebler says, paid for gas to go to Arizona to meet with Finicum, and Keebler alleges, even to Washington State for a secret ceremony in which he was inducted into a Coalition of Western States militia by Washington state representative Matt Shea. Read more…

My Unsexual Revolution

Illustration by Chloe Cushman

Diane Shipley | Longreads | July 2019 | 17 minutes (4,293 words)

In November 1998, I had sex for the first and last time. I was 19, my boyfriend was 21, and we’d been together for 10 months, long-distance. I was at university in Lancaster, a small town in the north west of England, and he lived in Essex, in the south east. I had a week off from classes, so I spent six hours taking two trains to stay in the sporadically-tidied house he shared with friends from work. On Wednesday morning, I walked to the pharmacy down the street to buy condoms and KY Jelly, shaking slightly as I handed over the cash. That night, with Ally McBeal on TV in the background, we lay on his narrow twin bed, kissing and touching each other before we slipped under the covers. I worried it might hurt, or feel awkward, or be over quickly, but it was great. Afterward, we ate chocolates, drank Coke, and swore we’d have sex all the time from then on.

We tried. Later that night; the next day; a couple of months later, on vacation in Florida. Each time, it was as if my vagina had snapped shut and no matter how hard he pushed or how vividly I pictured a tulip’s petals unfurling, nothing could convince it to open. Eventually, we gave up and went back to the heavy petting and blowjobs we’d each enjoyed, respectively, before. We were best friends, we were in love, we both had orgasms. In theory, I knew that penis-in-vagina intercourse wasn’t the only way to define sex. But it seemed like the most important, and I felt like a failure for not being a “proper” girlfriend; for being unfuckable.
Read more…

The Brazilian Healer and the Patron Saint of Impossible Causes

Illustration by Aimee Flom

Leigh Hopkins | Longreads | July 2019 | 25 minutes (6,131 words)

 

The roosters started at 4:30 in the pasture behind the inn. On the second crow, I rolled onto my back and blinked at the jalousie window’s slatted light, considering my first day at The Casa. We were allowed to ask three questions, no more. A visit with the world’s most famous spiritual surgeon was like going to see the wizard.

Mariana was silent in the bed next to me, the sleep falling in loose spirals across her face. I pulled back the sheets and slipped inside. “Bom dia.”

“Bom dia, meu amor.” A soft sound from a distant place.

Seven and a half years later, I receive a text from a friend in Rio: “Did you see the news?” She links to a New York Times article: “Celebrity Healer in Brazil Is Accused of Sexually Abusing Followers.”

***

Read more…

Shelved: Lee Hazlewood’s Cruisin’ For Surf Bunnies

Tom Maxwell | Longreads | June 2019 | 20 minutes (2,599 words)

 

Discouraged by the British Invasion, producer and songwriter Lee Hazlewood was planning to retire in 1964. The 35-year-old had certainly earned enough money to do it. Then Hazlewood’s next-door neighbor asked if he wanted to produce Nancy Sinatra, daughter of Frank.

“I’m not interested in producing second-generation artists,” Hazlewood said flatly — he’d already done that with Dean Martin’s son’s band — but then he agreed to a meeting.

“Everybody knows I drink Chivas,” Hazlewood remembered about that night. “When I walked in their house to meet with Nancy (she was living with her mom then), all along the walls, cleverly displayed, were all these bottles of Chivas lined up. And a bunch of my friends were there. It was Bobby Darin, a bunch more, and I’m thinkin’, ‘Wait a minute, what is this? I haven’t seen these people in months.’ … Halfway through the evening her dad comes through the door and meets me. They go in the kitchen and they’re talking. He comes out, shakes my hand, and says ‘I’m glad you kids are going to be working together’ and then walks out the door. I had only said that I’d come over and meet her!”

Having accepted an offer he couldn’t really refuse, Hazlewood set about updating Nancy’s image. “You’ve been married and now you’re divorced, and people know that,” Nancy said he told her. “So, let’s lose this virgin image. Let’s get rid of it.He had Sinatra sing in a lower register. “These Boots Are Made for Walking,” his original song that she agreed to record, became a No. 1 hit. The lyrics caused a bit of a stir.

“The controversy was [the word] ‘mess,’” Hazlewood, who grew up in the South, said. “‘Mess,’ down here where I live, in those days, was ‘fuck.’ If somebody said, ‘What did you do last night?’ ‘I was out messin’.’ I thought it was that way all over the world. But it wasn’t that way in Chicago, New York, or L.A.”

And that is the story of Lee Hazlewood’s most famous song and collaboration. Not as well-known are Hazlewood’s many other songwriting credits, his groundbreaking production techniques, or his foundational work creating a voice for the electric lead guitar. Then there’s the previously unreleased surf music record that Hazlewood wrote and produced.

“What I was struck with right off the top,” Hazlewood friend and collaborator Marty Cooper said about Cruisin’ for Surf Bunnies, “it sounds to me, because it’s got 12 songs on it, and the albums in those days had 12 songs on them, this is an album in search of a band, in the sense that it doesn’t actually sound like a band, but it’s too complete to not have been submitted as … ‘find a band.’ Maybe even like the Monkees or find the successors to the Beach Boys over on Capitol. I got that impression. There are certain things about it — the fact that Lee did not write all of [the songs]. It’s very meticulous.”

No one knows exactly why Cruisin’ for Surf Bunnies by Lee Hazlewood’s Woodchucks (a catch all name for his studio band) was shelved. When it was issued in September 2018, 11 years after his death, it seemed an odd postscript to an already iconoclastic career. Instead of an outlier, it’s further proof that, as a sculptor of sound, Hazlewood’s life as a songwriter and producer ranged more widely than most of his successful peers.

Born in Oklahoma in 1929, Hazlewood and his family moved with his itinerant oilfield father’s jobs through Louisiana and Arkansas, and finally wound up in Texas. He studied medicine before leaving university to serve in the Korean War. “My mom liked pop music and my dad liked bluegrass,” Lee once said. “So she complained always about his liking bluegrass — which, by the way, was a ‘love’ complaint — I grew up kinda all mixed up. I mean with music. And then I fell in love with Stan Kenton and the blues ’cause blues comes from this part of the world. So everything’s all mixed up.”

Instead of an outlier, Cruisin’ for Surf Bunnies is further proof that, as a sculptor of sound, Hazlewood’s life as a songwriter and producer ranged more widely than most of his successful peers.

By 1955, Hazlewood found himself working as a radio DJ and the owner of his own small record label in Phoenix, Arizona. He was also writing new material. Borrowing a riff from Bluesman Howlin’ Wolf, he wrote and produced the song “The Fool” for rockabilly singer Sanford Clark in 1956 — Hazlewood’s third single — a hit later covered by Elvis. Hazlewood also developed a new sound for local session guitarist Al Casey, who played on “The Fool.”

“I had to have an echo,” Hazlewood explained years later. “We just went out driving around, ’cause there’s a lot of places around Phoenix with small grain elevators. So we just went out and yelled in ’em all day. I yelled and yelled and yelled ’til I found one. … So we set it up outside the studio and put a little microphone at one end and a little speaker at the other. It worked very nice. …The only problem that we ever had with it is that birds would sit and chirp on it. It wasn’t a problem on the heavy stuff, but on the ballads, the quiet things, the birds would like to sing along. So we had to have someone out there to shoo the birds away.”

The grain silo echo effect proved popular with Hazlewood’s other collaborator, twangy instrumental guitarist Duane Eddy. Eddy’s 1958 anthem “Rebel-‘Rouser” — another Hazlewood composition — began a streak of big sellers. Hazlewood helped create a new lead guitar sound in the process.

“When I was in high school, there was a piano player I admired with slicked-back oily hair from New York called Eddy Duchin,” Hazlewood said, “and he played the melody way down there. I always thought that it would be nice if a guitarist did the same thing. When I first met Duane, I told him that I wanted to make a record with those low notes and he said, ‘I can do that.’ … We sold 25 million records over four years, which wasn’t bad.”

Hazlewood released his first solo record in 1963, a concept album called Trouble Is a Lonesome Town.

You won’t find it on any map

But take a step in any direction and

You’re in Trouble

It’s at once wry, hokey, and perceptive. Hazlewood has the vocal authority of Johnny Cash, the melodic sense of Roger Miller, and the just-this-side-of-parody folksiness of Tom T. Hall. He introduces songs on Trouble Is a Lonesome Town with extended spoken-word character sketches and cowboy poems. The instrumentation is acoustic and spare, and the touch of reverb transforms the songs into a dreamscape. Musically and thematically, Trouble Is a Lonesome Town is entirely self-contained and uniquely Lee Hazlewood. “That was a demo,” Hazlewood revealed in 2000. “I didn’t know it was a concept album. I wrote a complete story of a make-believe town.”

It says a lot that Hazlewood could put so much effort into a project he would later dismiss as only a demo. His success gave him the luxury to tinker in the studio, regardless of expense, in the same year when the Beatles recorded their first album in less than ten hours.

With this understanding, it’s easy to see how Cruisin’ For Surf Bunnies came into being. Surf music, popular since 1962, was largely instrumental and featured a typically reverb-laden lead guitar. In other words, whether its practitioners knew it or not, surf owed much of its expression to Lee Hazlewood. Working with Duane Eddy and using his grain silo reverb, he’d helped develop the technique. He had the producer’s savvy to take advantage of America’s latest musical craze. Now living in Los Angeles, Hazlewood had the connections to assemble the best studio band available — one that would famously become known as the Wrecking Crew.

“I didn’t call em the Wrecking Crew,” Hazlewood recalled. “That wasn’t my name. I brought Al Casey with me from Phoenix. I used a rhythm guitarist that nobody else used, a guy named Donnie Owens. [Drummer] Hal Blaine worked for me before he worked for anybody. He was working for Patti Page, then he worked for me, then of course we all spread the word about Hal and all the rest of the guys. Over here they were called the Wrecking Team, but when they worked for Sinatra they were called the B Team. I just called them my rhythm section ’cause I started a lot of them. Not started, but I got a lot of them a lot of work. And sometimes I couldn’t get ’em, and that really broke my heart. A year earlier you could call Hal and get him anytime.”

The reason for this is that Blaine and the rest of the Crew had become the most in-demand session players in the business, backing Jan and Dean, Simon and Garfunkel, the Mamas and the Papas, the Monkees, Herb Alpert, and Sonny and Cher, among others. They became the Beach Boys’ house band at the time of Brian Wilson’s greatest musical achievements, and were often employed by “wall of sound” producer Phil Spector, who began his career working for Lee Hazlewood.

“Phil had just started to make records and he came over to Phoenix a few times,” Hazlewood once said plainly. “I liked Phil. He was more Lester Sills’s protégé than mine. Although Phil asked a lot of questions, and I answered as many as I could.”

In other words, whether its practitioners knew it or not, surf music owed much of its expression to Lee Hazlewood.

“I told him on a number of occasions that I reckoned Spector had stolen his ideas: You only have to listen to Lee’s early work and then compare it to Spector’s to suspect that they may well be connected,” Hazlewood biographer Wyndham Wallace once said. “But Lee would dismiss this suggestion with a wave of the hand.”

As would be expected, when the prolific Hazlewood died, he left a cache of reel-to-reel tapes of both finished and unfinished recordings in his studio vaults. Matt Sullivan, music lover and entrepreneur, gained access to Hazlewood’s vault, and Sullivan’s Light in the Attic record label began releasing material as part of their Hazlewood archive series. “Deep in the LHI tape archive,” the label wrote on their website, “hid a mysterious tape marked ‘Woodchucks.’” When you write and record as much as Hazlewood, you leave a trail of tapes in your wake that others get tasked with sifting through. Only a talent who could dismiss a fully realized record as a demo could so casually shelve a session as complete as Surf Bunnies. Unfortunately, Hazlewood didn’t leave many details about the writing or recording of the record.

Some version of the Wrecking Crew assembled to cut Cruisin’ For Surf Bunnies on October 26, 1964, in Studio E at United Records studios in Los Angeles. “I’m not sure everybody that played on it,” Hazlewood collaborator Marty Cooper said after hearing the tapes, “but I can tell you that I can’t imagine anybody but Al Casey being the guitarist on that. If you go back to [Casey’s] ‘Surfin’ Hootenanny,’ which was on that label out of Chicago that Lee got a bunch of money for … there again, he could depend on Al to give him these various sounds. That’s my first impression.”

Cooper was interviewed by Hunter Lea, who wrote the liner notes for the album when Light in the Attic Records issued Cruisin’ For Surf Bunnies in 2018. Cooper had his own surf music credentials, having written “The Lonely Surfer,” a hit for Jack Nitzsche in 1963.

“It’s got every gimmick on it that you can have,” Cooper continued. “The other thing that makes me feel like it was a project as opposed to demos: it’s so assiduously non–Duane Eddy. One of the tracks has a little bit of tremolo, but there’s no tremolo guitar, there’s no lonely surfer guitar, there’s no Duane Eddy Fender tremolo. It’s just not there. That’s what makes me think [Lee] must’ve had a grand plan for [the project] that didn’t work out.”

Only one single from the project, “Angry Generation,” was released at the time, after being “sweetened,” in Lea’s words, “with overdubs.” Later covered by surf music architect Dick Dale, it communicates an incandescent menace.

Dale wasn’t the only artist to help himself to this musical buffet. Other Surf Bunnies songs were covered by the Astronauts, Jack Nitzsche, the Ventures, and the Surfaris — as well as John Paul Jones, later to become Led Zeppelin’s bassist. The Duane Eddy low-note lead guitar is present and correct on Jones’s version of “Baja.”

The next year Hazlewood would consider retirement, then enjoy the career catapult of “These Boots Were Made for Walking.” Hazlewood and Sinatra would also duet with great success, most notably with 1967’s lush “Some Velvet Morning.”

“Some velvet morning when I’m straight,” Hazlewood sings without fear of censorship, “I’m gonna open up your gate.”

“I write songs with double and triple meanings,” Hazlewood told writer Spencer Leigh in 2004. “I know that my songs are a little different and I would say that I am the best writer of Lee Hazlewood songs.”

Another Hazlewood/Sinatra production, the Les Paul–inflected bonbon “Sugar Town” was actually about drugs.  

As would be expected, when the prolific Hazlewood died, he left a cache of reel-to-reel tapes of both finished and unfinished recordings in his studio vaults.

“In those days they were taking sugar cubes and putting acid on ’em,” he told rock ‘n’ roll archivist and collector Billy Miller. “And of course that would be ‘Sugar Town,’ wouldn’t it? You had to make the lyric dingy enough where the kids knew what you were talking about — and they did. Double entendre. But not much more if you wanted to get it played on the radio. We used to have lots of trouble with lyrics, but I think it’s fun to keep it hidden a little bit.”

Hazlewood continued releasing solo albums, as well as duetting with actress and singer Ann Margret. He founded a new record label, Lee Hazlewood Industries, which signed country rock pioneer Gram Parsons’s first group, the International Submarine Band. When Parsons later joined the Byrds, his vocals on Sweetheart of the Rodeo had to be erased because of a contractual dispute with LHI. (“We had some problems there,” Hazlewood remembered, “but we straightened them out. [Parsons] had to pay back all his royalties and everything. But he had to pay back through earnings, and I knew he never would.”)

After moving to Sweden in 1970, Hazlewood kept a low profile, releasing albums in a fitfull manner. In the late ’90s, Sonic Youth drummer Steve Shelley began reissuing Hazlewood records to a receptive crowd that included Beck and Jarvis Cocker. Lee’s final album, 2006’s Cake or Death, contains his epitaph, the string-laden “T.O.M. (The Old Man)”:

Have you seen the mountains? They still hug the snow

And have you seen the old man? He’s ready to go

And his tongue — his tongue tastes forever, and his mind wonders what forever will bring

In this place they call forever, will there be any songs to sing?

Hazlewood died of renal cancer the following year. “I’ve been around long enough now,” he told the New York Times shortly before his death. “I’ve lived a pretty interesting life — not too much sadness, a lot of happiness, lots of fun. And I didn’t do much of anything I didn’t want to do.”

“He was a master — there’s no question about it,” Marty Cooper noted. “He invented sounds that no one was doing.” When genres like surf music employed some of those sounds, Hazlewood played with those expressions too. Then he moved on.

***

Tom Maxwell is a writer and musician. He likes how one informs the other.

Editor: Aaron Gilbreath; Fact-checker: Sam Schuyler

Yentl Syndrome: A Deadly Data Bias Against Women

Illustration by Homestead

Caroline Criado Perez | An excerpt adapted from Invisible Women: Data Bias in a World Designed for Men | Harry N. Abrams | 22 minutes (5,929 words)

In the 1983 film Yentl, Barbra Streisand plays a young Jewish woman in Poland who pretends to be a man in order to receive an education. The film’s premise has made its way into medical lore as “Yentl syndrome,” which describes the phenomenon whereby women are misdiagnosed and poorly treated unless their symptoms or diseases conform to that of men. Sometimes, Yentl syndrome can prove fatal.

If I were to ask you to picture someone in the throes of a heart attack, you most likely would think of a man in his late middle age, possibly overweight, clutching at his heart in agony. That’s certainly what a Google image search offers up. You’re unlikely to think of a woman: heart disease is a male thing. But this stereotype is misleading. A recent analysis of data from 22 million people from North America, Europe, Asia and Australasia found that women from lower socio-economic backgrounds are 25% more likely to suffer a heart attack than men in the same income bracket.

Since 1989, cardiovascular disease has been the leading cause of death in US women and, following a heart attack, women are more likely to die than men. This disparity in deaths has been the case since 1984, and young women appear to be particularly at risk: in 2016 the British Medical Journal reported that young women were almost twice as likely as men to die in hospital. This may be in part because doctors aren’t spotting at-risk women: in 2016, the American Heart Association also raised concerns about a number of risk-prediction models “commonly used” in patients with acute coronary syndrome, because they were developed in patient populations that were at least two-thirds male. The performance of these risk-prediction models in women “is not well established.”

Common preventative methods may also not work as well in women. Acetylsalicylic acid (aspirin) has been found to be effective in preventing a first heart attack in men, but a 2005 paper found that it had a “nonsignificant” effect in women aged between forty-five and sixty-five. Prior to this study, the authors noted, there had been “few similar data in women.” A more recent study from 2011 found that not only was aspirin ineffective for women, it was potentially harmful “in the majority of patients.” Similarly, a 2015 study found that taking a low dose of aspirin every other day “is ineffective or harmful in the majority of women in primary prevention” of cancer or heart disease. Read more…