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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

The First Book

Sarah Menkedick | Longreads | July 2019 | 38 minutes (10,294 words)

For me the low point came two months after publication, at a playground a few blocks from my house. I sobbed on the phone with my sister, eking out incomprehensible sentences about my career this, my life expectations that, writing this, the publishing industry that, until finally my sister said, “Maybe you should look for a different job?” and I realized the jig was up — I was doomed to keep doing this ridiculous and often seemingly pointless thing.

A few weeks before this, I’d received my first letters from readers telling me how much they’d loved and needed the book, and I’d had another sister-to-sister phone call — just as wrought with emotion — in which I raved about all the deeper meaning and purpose of this milestone and how it wasn’t about the sales and the metrics but about what mattered blah blah blah. I ping-ponged like this for awhile, alternately aglow and despondent, hopeful and wretched, until finally I just started writing again and got on with it.

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On Keeping a Notebook: A Reading List

“I can feel my brain changing.” Those were the first words I wrote in what would eventually become a continuous journal spanning thousands of pages and dozens of notebooks.

It was the middle of the night, and after I jotted the thought down, I added, “Is it permanent?”

I felt as if a tuning fork had been struck, its echo reverberating in my head. We were living in Atlanta then, and our house had one of those oversized master suites, inherited from the previous owner, so once out of bed, I was standing in a small sitting room that adjoined the bedroom. Next to me, a lamp I’d spirited away from my grandfather’s house cast a small glow, easing the insomnia I was experiencing. I kept repeating a phrase to myself, “The rough places made smooth.” I wasn’t sure if it was a biblical quote, or whether I had combined two different sayings (Atlanta is the birthplace of Martin Luther King, Jr., and I had the vague idea that Dr. King had said something to that effect). I only knew I felt relief at committing some of my inner turmoil to paper.

The next night, awake again at 3 a.m., I wrote about what I called “adventures in mind-expansion.” The journaling struck me as unusual. I was a reporter at an NPR station at the time and had been a news journalist for more than a decade. But this was different — akin to the writing I’d done when I was 9 and my teachers predicted I would be a writer.

I can partly chalk it up to something that happened a week later — my son’s birth. When I went into labor and headed off to the hospital that warm July day, I packed a notebook, a practice I’d abandoned years before when my expat days in Italy had concluded. One of the first photos I have with my newborn shows me writing in the maternity ward while nursing him. From there, a notebook became my constant companion. Some days in early motherhood, I couldn’t stop writing. I’d fill notebook pages at different intervals of the day, like an ongoing Twitter thread.

I was preparing for motherhood to change my life; it was the transformation I’d trained my eyes on entirely. But instead a parallel transformation involving writing also emerged.

Writing anchored me through my first year as a working mom. I’d pull off the road to write on my way home from work, or jot a few lines in the daycare parking lot. I found the twister of passing buildings, pedestrians, music on the radio, and the sounds of my son floating up from the backseat inspired me to experience new joys or simply savor old ones from a new vantage point. Sometimes I would even write while leaning the journal against the steering wheel, my eye moving between the page and the road.

Motherhood had reunited me with writing, which once again became my confidant, my forever friend. Another event could have been the trigger — a death, a divorce, a relocation. But either way, the pivotal instrument was a notebook — not a computer, not a tablet, not a phone.

Once I began writing again in earnest, I created computer files to record my ideas at greater length. But I wanted to be writing all the time, and one cannot write on a laptop all the time with a baby. A notebook is the solution. You can always write in a notebook — on a plane, in the car, even while out on a lake in a canoe. It’s almost never a breach of etiquette to pull out a notebook. I now teach, and I’ll often write in my notebook if I’ve arrived early for class. A notebook also never loses power and never has a glitch.

I keep lots of notebooks, but perhaps the most important is the small one I stash in my purse. It’s a baby notebook used for appointments and reminders that doubles as a “bits journal,” to steal a phrase from poet David Kirby, since I use it to record any image, phrase, or event that strikes my fancy and could contribute to a piece of writing later. I look at it obsessively throughout the day, re-reading my to-do list or jotting down ideas for stories, articles, poems, or gifts for my son. A typical day reads something like this:

Follow up on sleep pitch.
1 p.m. haircut.
Add “intimacy junkie” to the Di Lascia translation pitch cover letter.
Pick up birthday cake.
Finish book review for the Kenyon Review.
What about a piece called something like, “In Defense of Sleeplessness?”

On my way out of the house, I instinctively grab this daily notebook since I never know when I will think of lines I want to add to a piece in progress.

What’s more, it has given me a constant vocation that doesn’t allow much time for obsessing about other concerns. I’ll get a new phone if I lose the one I have but if my daily notebook goes missing? I’d lose my mind. In fact, it has such power — and provides such security — that I fear (somewhat ridiculously) for its safety.

I now take a notebook with me on every trip, which is fortuitous because I began writing the piece you’re reading while vacationing on a small, remote island in Vermont. The following longreads explore the joys of keeping a notebook and the art of writing longhand.

1. Are We Different Writers When We Move From Longhand to a Screen? (James Draney, August 2017, Literary Hub)

Like an intellectual historian, James Draney brings us a survey of how different authors and thinkers viewed developments in writing — specifically the instruments we use to write instead of writing longhand. He laments that “alas, the page that once contained the essence of the human voice has given way to a simulation of itself on the digital screen.” A simulation. Oh, that’s good. I feel as though I should call the fire brigade or yell, “Stop the presses!”

Draney cites a wide list of authors, including the philosopher Martin Heidegger, who viewed the typewriter as something “charged with an unthinkable crime.” Draney writes:

For him, this writing machine was no benign piece of secretarial equipment: it was actually destroying the very essence of the human, click by mechanical click.

Draney weighs the impact of “tapping out a word, perhaps backspacing, deleting, highlighting, copying and pasting,” asking, “how do these mechanical ways of writing change the way we think?”

It’s interesting to note that unlike the other authors or subjects of the links here, Draney is not necessarily pro-longhand. That’s because writing in longhand isn’t a skill he acquired long before learning to type on a computer.

It’s odd to think that writers born today will not have any paper in their archives. It’s even funnier to think that these future writers may never actually learn to write. This was what it was like for me, born in 1990. I learned to write by hand at the very same time I learned to type. But rather than focus on my penmanship, I learned to process words on a machine for which writing, typing and processing were one and the same functions. Before the swirl of the pen, there was the plastic click of the keyboard. Not one continuous movement but thousands of discrete ones: arachnid fingers on a plastic pad.

2. Woke Up This Morning (Louis Menard, December 2007, The New Yorker)

There are many ways to use a notebook: anything from journaling, brainstorming, note-taking, and writing in one’s diary. Louis Menand focuses on that last substratum of notebook use, probably the most common form until recently. He is appropriately skeptical about the average person’s ability to remain faithful to a diary, largely because it requires that one input all thoughts, not just the pretty ones or the ones that sound good. “Most people don’t confess; they repress,” he writes.

“Never discriminate, never omit” is one of the unstated rules of diary-keeping. The rule is perverse, because all writing is about control, and writing a diary is a way to control the day—to have, as it were, the last word. But diaries are composed under the fiction that the day is in control, that you are simply a passive recorder of circumstance, and so everything has to go in whether it mattered or not—as though deciding when it didn’t were somehow not your business.

He adds that if the journal in question doesn’t contain a lot of unimportant drivel (“dross”), it’s not a diary. “It’s something else — a journal, or a writer’s notebook, or a blog (blather is not the same as dross).”

3. Mostly True (Sarah Manguso, February 2015, T: The New York Times Style Magazine)

One of the more noted diarists of recent years is writer Sarah Manguso who, unlike Anaïs Nin, didn’t publish her diary but rather published a book about it called Ongoingness: The End of a Diary. Manguso kept her diary for several decades. In this article from the New York TimesT Magazine, she tells us about the impetus of her diary and its contents, but perhaps one of the most interesting snippets to my mind is that she does not fetishize the actual container of the diary, which is to say the “little black books” she’s used.

In my late teens, overburdened by an excess of life, I built a storage facility for it: a diary. After I wrote things down I could safely forget them. It was the only relief I ever found, and I kept at it. I don’t keep a routine, but the diary gets written daily — usually several times daily, even in transit, in hospitals and at parties. In little black books and, as of this year, on my phone. Since 1992 I’ve created a new text file on my computer every New Year’s Day. Whatever I have written gets transcribed into the file and I throw the draft away. A little black book is a beautiful object, but I don’t care about the objects; I care only about the words in them.

4. 8 Writing Tips from Jeff Vandemeer (Jeff Vandemeer, March 2018, Chicago Review of Books)

The impetus for this article was a single word buried amid some writing tips from blockbuster science fiction author Jeff Vandemeer. Specifically, the word “luddite.” It appears in a tip about recording bits of inspiration whenever they come to you. He writes:

There is an immediacy to writing it on paper that appeals to me, too. This doesn’t strike me as a luddite thing, but a thing about the human brain.

As a journeyman writer, I gained all kinds of useful info on his writing process and the story behind the huge success of his “Annihilation” series of books from the piece, but the killer line for me is the one about being (or not being, as the case may be) a luddite. He seems almost apologetic about suggesting that the offline, old-school technology world might be all right, too. Which is too bad because his ideas are fantastic.

I carry a pen and a small notebook or loose notecards with me at all times. I also keep them on the nightstand next to the bed. I have pieces of paper in the kitchen, too. Over the past twenty years especially, I have not lost or forgotten a single idea or scene fragment or character observation or bit of dialogue because I have always written it down immediately, no matter what situation I’m in (this includes when I had a day job).

Over time, my subconscious has rewarded me more and more for taking It seriously. If your subconscious brain “knows” you are going to write it all down and use what it gives you, a loop is created where, at times, and depending on other factors, the problem isn’t lack of ideas but having too many ideas.

Like Vandemeer, I feel as though similar accusations are coming my way when I think about how a notebook’s “technology” is actually superior to a phone or computer. I open it and voilà, my dear ones, my notebook is ON. Close it, then open it again, and I’ve “rebooted” it. When I want to transcribe a thought, an idea for a project or the next line of this piece, I want to do it instantaneously and a notebook is the only instrument that can meet that demand (excluding, of course, writing on my hand). If I were Vandemeer and had written multiple best-selling novels, I hope I wouldn’t be shy about saying what to me is obvious.

5. Messy Attics of the Mind: What’s Inside a Writer’s Notebook? (Philip Horne, Paul Theroux, Susie Boyt, and Amit Chaudhuri; April 2018; The Guardian)

The way the writers featured in this piece describe their notebooks, I know they are besotted with the practice. They are kindred spirits, and they write beautifully about it. This is especially so with Susie Boyt, who calls her notebooks “messy little attics of the mind.” It’s such a lovely, original description that I almost find it aspirational — do my notebooks really look like messy little attics of the mind? If not, I’ll be working on that today. The expression appears in an extended description of her notebook history:

I have always kept notebooks — messy little attics of the mind, an odd assortment of shapes and colours stuffed into drawers next to defunct phones and balls of string. They feel private and tender, a bit like night clothes; or embarrassing, like over-eager little sisters.

I admire writers who operate their notebooks rigorously, with mathematical co-ordinates of character and plot, in the fashion of the Euston Road School painters, but mine are filled with a jumble of poetry, prose and criticism, lists, plans, with occasional personal anecdotes in which I often emerge the slightee.

6. Joyce Carol Oates: The Art of Fiction, No. 72 (Robert Phillips, Fall-Winter 1978; The Paris Review)

OK, so many writers and artists keep notebooks — this we know. But some actually compose their first versions of their work in a notebook. In other words, they write longhand. In this wonderful interview from the Paris Review, prolific author Joyce Carol Oates includes a brief mention about writing longhand and how typing on a typewriter is now “an alien thing.” Arguably I could have just written “Joyce Carol Oates” and any argument about the potential virtues of writing longhand would cease. Joyce Carol Oates does it. Need I say more? It’s especially so since she has written about five dozen books. And she isn’t just using a notebook — she is composing entirely in longhand before ever touching a computer file. (I assume the practice began after Them, her 1969 novel, which won the National Book Award and runs 500 pages, but still).

“Childwold needed to be written in longhand, of course. And now everything finds its initial expression in longhand and the typewriter has become a rather alien thing—a thing of formality and impersonality. My first novels were all written on a typewriter: first draft straight through, then revisions, then final draft. But I can’t do that any longer.

The thought of dictating into a machine doesn’t appeal to me at all. Henry James’s later works would have been better had he resisted that curious sort of self-indulgence, dictating to a secretary. The roaming garrulousness of ordinary speech is usually corrected when it’s transcribed into written prose.

I love the way she says that “now everything finds its initial expression in longhand.” On a par with the way you might have changed your morning routine once you learned about coffee, or the way you might structure your life once you’ve understood the vagaries of unbridled love.

7. Mary Gordon on the Joy of Notebooks and How Writing By Hand Catalyzes Creativity (Maria Popova, February 2013; Brainpickings)

Mary Gordon, a novelist and memoirist from New York, is a true acolyte of writing longhand. And her essay on the topic, “Putting Pen to Paper, but Not Just Any Pen to Just Any Paper,” is excerpted generously in this piece from Brainpickings about a book of essays by writers on their writing processes. We learn about Gordon’s writing process, how she reads and listens to music before composing anything herself. We also see her deftly locate the essence of notebook use:

For related reading, here’s a piece from BookRiot on the finer points of writing in pencil.

Writing by hand is laborious, and that is why typewriters were invented. But I believe that the labor has virtue, because of its very physicality. For one thing it involves flesh, blood and the thingness of pen and paper, those anchors that remind us that, however thoroughly we lose ourselves in the vortex of our invention, we inhabit a corporeal world.

8. Why I’m Obsessed With Reading Books About Writing in Notebooks (Josephine Wolff, February 2019; The Washington Post)

There is an adjacent topic to writing in a notebook and that’s the publishing industry sector that’s grown up around the practice (or aspirational practice) of writing in a notebook (this is still America, after all). A delightful look into this phenomenon comes to us here by way of a professor not of writing but of cybersecurity. Here, we find notebook devotees — professional notebookers, you could say — trying to indoctrinate everyone by selling specific types of notebooks.

One reason I’m so transfixed by notebook experts is that their systems bring together free-form, individualized artistic expression and the structured formatting and rigid rules of computer science. This may be key to the appeal of notebooking: In an increasingly algorithmic world, these systems let us crack open the black boxes of our lives, allowing us to develop systems of our own and helping us figure out what matters to us along the way.

Selfishly, I’ll add that for me the best line in the piece is where it becomes clear she is truly as obsessed with notebooks as I am. She writes that at any moment, she keeps “one for daily to-do lists and appointments, one for notes and ideas, [and] one for teaching.” If she added a sleep diary (which I began keeping this year), we’d be about even.

* * *

Jeanne Bonner is a writer, editor, and literary translator whose work has been published by the New York Times, Catapult, Marketplace, and CNN Travel. She won the 2018 PEN Grant for the English Translation of Italian Literature for her translation-in-progress of Mariateresa Di Lascia’s Passaggio in Ombra. She will be a short-term fellow at the New York Public Library in 2020.

Editor: Cheri Lucas Rowlands

Understanding Craig Stecyk

Photos by Susanne Melanie Berry

Joe Donnelly | L.A. Man | Rare Bird Books | April 2018 | 42 minutes (8,454 words)

 

Decades ago, Craig R. Stecyk III tagged the walls near his seedy surf spot at Pacific Ocean Park, then a crumbling pier of abandoned rides and amusement parlors straddling the Venice and Santa Monica border. Among the graffiti were the terms POP and DOGTOWN running horizontally and vertically in a cross, a rat’s head in the skull’s position over crossbones, with the warning, “death to invaders.” At first, these markings were little more -than youthful insolence, meant to stake territorial claim for his band of surfers and skateboarders, many of whom were recently glorified in the documentary Dogtown and Z-Boys. In the ’70s and ’80s, though, through enterprises like Jeff Ho’s Zephyr Surf Shop, Dogtown Skates and Powell Peralta skateboarding company, these images would become among the first widely disseminated skateboarder graphic art; the first icons of a radical, street-savvy youth culture that reflected the attitudes of Stecyk and his Dogtown peers. Meanwhile, in magazines like Skateboarder and Thrasher, Stecyk’s photos and essays about the scofflaw Z-Boys skateboarding team created and spread the Dogtown myth to eager adolescents across the country.

Read more…

The Top 5 Longreads of the Week

John Greim / LightRocket / Getty Images

This week, we’re sharing stories from Lizzie Presser, Barbara Bradley Hagerty, S. Margot Finn, Darcy Frey, and Logan Hill.

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This (Wo)Man’s Work

Bulat Silvia / Getty, photo collage by Homestead

Soraya Roberts | Longreads | June 2019 |  11 minutes (2,804 words)

What is it about my work that makes it so much less esteemed than so many men’s? Was it not produced with enough sweat? With enough brain power? With enough complaint? What is it that gives a man sitting in an ergonomic chair, staring at a computer screen, typing on a laptop, so much more gravitas? Maybe he’s not doing it with a fan pointed at him, like I am. Maybe he doesn’t have a bottle of water next to him. Or is it the bouquet of flowers on my desk? Does the smell transfer to my work? Is labor produced in a sweet-smelling room less insightful? If you shut your eyes and I put my work in one of your hands and a man’s in the other, will you be able to weigh the difference? What if neither of us have done anything yet? Will you be able to weigh it then?

“1 in 8 men believe they can make a better film than Andrea Arnold,” one person tweeted last week. I laughed. It was a quip amalgamating two stories that dominated social media that same week, both impressively undermining women’s work. One was a survey of 1,732 Brits conducted by YouGov that found that 12 percent of the men believed they could win a point off Serena Williams, a tennis champion who holds the most Grand Slam titles combined — singles, doubles, mixed doubles — of any player currently on the pro tennis circuit. The second was a report from IndieWire, citing a number of anonymous sources, that claimed the second season of Big Little Lies, directed by British auteur Andrea Arnold, was ripped out from under her and put back in the hands of first season director Jean-Marc Vallée to do with what he pleased. To be clear, Arnold is an Oscar-winning filmmaker who has claimed the jury prize at Cannes three times. Vallée is not. Like him, she has directed episodes on four TV series. But there’s one key thing that Vallée had that she didn’t: an established rapport with Big Little Lies creator David E. Kelley.

Oh, male bonds; so reserved and yet so unconditional. This is the kind of alliance that has Eddie Murphy backing John Landis to direct Coming to America a year after Landis was charged with involuntary manslaughter (he was acquitted). This is the kind of camaraderie that has Prince Andrew attending a welcome-back-to-New-York party that registered sex offender Jeffrey Epstein reportedly threw for himself. These are extreme examples, but in essence, they show men supporting men they like, no matter the quality of their work, what they’ve done. 

Imagine how men who have done nothing so problematic are treated by their male friends. Imagine if literally any women were treated that way.

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Bundyville: The Remnant, Chapter Five: The Remnant

Illustration by Zoë van Dijk

Leah Sottile | Longreads | July 2019 | 45 minutes (9,790 words)

Part 5 of 5 of Bundyville: The Remnant, season two of Bundyville, a series and podcast from Longreads and OPBCatch up on season one of Bundyville here.

I.

Stella Anne Bulla was born in November 1949 in Asheboro, North Carolina to Dorothy Ann Lemon and Brinford Bulla, a man who served in the Navy and worked for the federal government as a postal employee most of his life. Stella — who, at some point, preferred to be called by her middle name, Anne — was one of five children: brothers, Artis, John and Brad, and a sister, Cara. The children were raised devout Southern Baptists, attending church meetings once during the week, and twice on weekends. Anne wanted to grow up one day and live in a place where she could ride horses. 

By high school, Anne adhered to the “higher the hair, the closer to God” school of thought: Where other girls of Grimsley High School smiled with youthful innocence from photos, Anne grinned knowingly, hair teased high and wide into a flipped bouffant. 

Later, Anne met a man named Barry Byrd, and the two married, had a daughter, and moved to Stevens County, Washington in 1973, after Barry got out of the Air Force. He took a job in a Colville body shop — finally starting his own in the tiny town of Northport. The Byrds started a band called Legacy. Anne’s brother, Brad Bulla, joined them, playing mandolin, lead guitar, and banjo along with the Byrds’ vocals. The group released two records: Sons of the Republic and, in 1984, Judah’s Advance — which were sold via mail order by Christian Identity groups as far away as Australia. “Legacy is unique in that their music is designed with the Israel Identity image, and is an excellent way to introduce the subject to thousands of people,” the Australian group wrote in a newsletter. 

 

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

The Judah’s Advance cover features a drawing of a ship bearing down on a rocky coastline, where a stone tablet engraved with the Ten Commandments sat amongst a pile of rocks that had fallen from the sky. In the center, an American flag — bearing just 13 stars and the number 76 — whips in the wind.

On Judah’s Advance, Dan Henry, the pastor at The Ark — the Christian Identity church where Byrds worshipped, but that has also helped produce violent acolytes — read a line of scripture, and the band thanked him in the credits. The producer for the album, they said, was YAHWEH. 

The back of the album is even more Christian Identity than the front. Alongside a photograph of the grinning musicians, the band lays out its beliefs: “Our forefathers understood that the establishment of this country was the fulfillment of the prophecy concerning the re-gathering of the nation of Israel,” it explains. The savior, the band writes, was a descendant of the “Judahites”, while “the true children of Israel,” after being freed from captivity, migrated westward, settling in “Scotland, Ireland, Britain and every other Christian, Anglo-Saxon nation in the world today.”

It reads like the liner notes to a Christian Identity concept album, and it made Legacy a popular feature on the Christian Identity and white supremacist conference touring circuit. In 1986, the band played the Northwest Freedom Rally in Richland, Washington alongside a bill of racist speakers. And from 1987 to 1989, the group reportedly traveled yearly to Colorado to play Pete Peters’ Rocky Mountain Bible Camps. Peters had been a guest at The Ark and the Aryan Nations, lecturing on the end of the world, and his hatred for Jews and homosexuals.

But Legacy was more than a band providing musical accompaniment to racists: In 1988, Barry Byrd and his brother-in-law and Legacy bandmate, Brad, were two of just 15 men who deliberated for about a week about their beliefs, and authored a document entitled “Remnant Resolves.” 

The document elaborates that the men felt a “spiritual burden”: “This burden was the need and desire to see Biblical principles of government once again established in our nation,” it reads. The men agreed that if they could not come to a consensus on solving that burden, they would not proceed with writing the document.

What comes next are resolutions to fix society for “the remnant” — the way for the chosen people to live in the fullest realization of liberty. Biblical principles should be put into practice at every level of government. The band maintained that in the home, women should be submissive to their husbands. Locally, the civil government should punish evil and protect the good. And at the federal level, taxes need to stop, since you can’t tax what God created. 

“It is blasphemous to regard antichrists as ‘God’s chosen people’ and to allow them to rule over or hold public office in a Christian Nation,” it reads. “Aborticide is murder. Sodomy is a sin against God and Nature. Inter-racial marriage pollutes the integrity of the family. Pornography destroys the purity of the mind of the individual and defiles the conscience of the Nation.” 

At the end, when it was all down on paper, there they are smiling wide for a picture — as if someone had said “say cheese” when they took it — and all fifteen men signed their names. 

A year after the Remnant Resolves, Legacy (now named Watchman) was back on tour, scheduled to play a Santa Rosa, California church affiliated with Dennis Peacocke, a self-described political activist turned leader in the “shepherding movement” — a religious movement in the 1970s and ’80s that involved congregants turning over all personal decisions to a spiritual leader, and has been criticized as cult-like

The Byrds made more than one trip to Peacocke’s church for Fellowship of Christian Leaders (FCL) conferences. During one visit, they stayed with a church host family: the Johnsons. Rick Johnson would eventually move his family north to Marble in the mid-1990s, and still lives there today.

At the time, Johnson’s son Jesse was just a kid, but he still recalls meeting the Byrds. Something about Anne immediately stuck out to him. “She has these piercing blue eyes,” he recalls. “I remember kind of being off put by that and … just by her presence. Because she didn’t smile very much. She was really intense and when she talked to you it was about what you’re doing to have a better relationship with the Lord. And I was, like, 8.

Within a week of living at Marble, Jesse Johnson says he and one of his brothers “made a pact that we were leaving as soon as we were old enough.” 

But back in 1992, when the Byrds were still working on bringing their vision of a “Christian covenant community” to life, people in Stevens County were nervous, citing concern over the couple’s connection with Pete Peters. People called the group cultish; the Byrds made a brochure that said they weren’t “the least bit cultish or isolationist.” In that same brochure, the couple predicted “cataclysmic events.” At a city council meeting, they claimed to their neighbors that they weren’t racist, and didn’t “condone hatred”— in fact, Barry told the Spokesman-Review that they wanted to create a ministry and a working ranch to “take youngsters” of all races in. The couple claimed they’d severed ties with Peters and that their attendance at the Rocky Mountain Bible Camp was only to play music. They didn’t mention the “Remnant Resolves.” Debate about the Byrds and Peters raged for months in the pages of the Colville Statesman-Examiner. 

In May, a Colville man expressed concern in the paper: “We would love to have our fears allayed,” he wrote of the Byrds. “But the trail back to Pete Peters appears to be pretty warm.” 

The Byrds attempted to shoot down a list of rumors they were asked to address by Northport’s mayor at a May 1992 city council meeting. They said they had no relationship with Peters, never held white supremacist beliefs, and concluded that people with concerns should come to Marble. Barry Byrd “advised that reading newspapers was not a worthwhile way of attaining accurate information,” according to a report on the meeting. 

Meanwhile, in nearby North Idaho, Bo Gritz — a former Green Beret who once ran for President, and who famously served as a liaison between federal agents and Randy Weaver at the end of the Ruby Ridge standoff — attempted to create his own Christian covenant community, called “Almost Heaven.” Some said he modeled it after what the Byrds created at Marble.

Paul Glanville, a doctor, liked the idea, too, when he heard it. He brought his family north to Marble in 1992, several years after meeting the Byrds. He was delivering a presentation on low-cost or free medical care at a Christian seminar when he encountered the couple, who were  giving a talk on establishing covenant communities. “They are very charismatic,” Glanville recalls. “I really was interested in this idea of a Christian community where I could practice medicine in what I considered a very Biblical way.”

Once at Marble, he says he enjoyed the close community, the focus on church and family. It felt like his family had moved to the promised land. People would get to church early, chattering with the company of the other people who lived there, hurrying downstairs to stake a claim for the casserole dishes they’d bring each Sunday for a potluck, before rushing up again for church. 

But over time, cracks emerged in the smooth veneer of the Marble promise. Nothing drastic, just small fissures that, over time, built up. In the spring of 1997 Glanville noticed a strangely competitive drive behind — of all things — Marble’s softball teams. He says he felt there was a need to win, to conquer all of the other church teams from the area, as if to prove Marble’s superiority. Glanville sometimes skipped the adult games to watch his kids play softball. Soon after, the leaders called an emergency meeting to chastise anyone who skipped the adult games. Glanville found the suggestion that he watch the Byrds’ team over his own child’s bizarre. 

After a few years, Glanville started to feel that he hadn’t made a covenant with God so much as with the Byrds. “What they mean by ‘covenant’ is total, absolute obedience to the leadership without questioning, and that the leadership eventually has your permission to question you and scrutinize your life in the most invasive ways that you can possibly imagine,” he says. “They might not start that out from the beginning like that, but they will end up that way.”  

From the pulpit, the couple preached about “slander,” about never questioning their leadership, and turning in anyone who did. The Byrds gave sermons about submission, obedience. The word “individual” was sinful — individuality being a sin of pride. 

The church leaders would encourage the families there to turn against their own blood — parents reporting on children, children reporting parents, neighbors against neighbors — if that meant preserving perfection at Marble. 

Glanville says his own children went to Marble’s leadership and told them that he was skeptical of their intentions and teachings. By the summer of 1994, he says, “My kids and wife had been totally brainwashed.” He continues, “They were turning me in to Marble for negative talk.”

But even he didn’t understand how quickly he’d lost them: When he finally decided to leave, Glanville was shocked that his wife and family refused to come with him. “My wife filed for divorce when I left. And my kids basically all signed the divorce papers,” he says. 

“I could do a lot of things in this church,” Barry Byrd said in one 1994 sermon. “I have the authority. I could misuse it. I could manipulate you and intimidate you, which you know, I’m sure we’ve done some of that. Not meaning to, but that’s just part of the deal.”

The pulpit too, was Barry Byrd’s megaphone for talk of a country ruled by Biblical law, of the sins of the government, about the entire reason Marble was here at all.

“We’re fighting for something that much blood has been shed for, beginning [with] the blood of Jesus,” he said. “If the spirit of the Lord does not reign supreme and this book is not the law that governs all of life and living, then there is no peace and there is no liberty!” He spoke of righteous anger and “holy hatred” for those getting in the way of “the government of God.”

Byrd even glorified martyrdom as a way to achieve the church’s goals: “So you see, I don’t have any problem being martyred if I know it’s what God’s called me to. If I know that my blood is going to water the tree of Liberty and build for future generations, I would gladly give my life today.”

Two decades since he left Marble broken-hearted, alone, Glanville still sometimes hears the Byrds’ words in his head, nagging at him, pulling him back to that time, making him question how he could have fallen under the place’s sway. 

His mind goes back to the moments he still blamed himself for not being perfect. Times when Marble convinced him he was the problem, meetings when Barry Byrd stood over him shaking a fist, making him believe he was lucky they were being so patient with him.

“And you could say ‘well why did you put up with that?’” he tells me this spring. “A lot of people who are trying to leave a cult have magical thinking. That if they just could say the right thing, or do the right thing, the leaders will suddenly see the truth and repent and everything will be alright.”

***

Back in 1988, when the Byrds’ band was on tour, Anne Byrd’s own brothers, too, were positioning themselves as chosen ones. 

The Bullas were a family of prophets. It was as if they believed their ears were calibrated to pick up the unique pitch of the Lord’s voice.

Anne’s eldest brother, Art Bulla, at the time, was living in Utah and had converted away from the family’s Southern Baptist roots to his own racist interpretation of Mormonism. He found himself maligned from the mainstream LDS church in the early 1980s when he called himself “the one mighty and strong,” claiming he was receiving revelations. He also expressed his belief in polygamy, but admitted he’d had trouble recruiting women to marry him. He split from the church when it started ordaining blacks. 

Art Bulla, who I reached by phone at his Baja, Mexico home, says he visited his siblings Anne and Brad Bulla, and his brother-in-law Barry, in the early days of their Marble community. And though he says his sister and Barry were still practicing racist Christian Identity beliefs — which he points out he actually agrees with — he thought the couple seemed to be controlling the people who would form Marble. 

“Barry had a very strong personality, and Anne did too, and so they were able to hornswoggle if you will, the gullible,” he says. “I had suspected that Anne had gone too far with the controlling thing.” 

Art Bulla tells me he’s the only prophet in the family — not Anne and not their brother I found who pastes notes that say “God’s only priest” to cutouts of naked women and posts the pictures to Twitter. Art says he is the chosen one. 

“[Anne] always felt that she had to be in competition with me. And since I’m receiving revelations, then she’s got to receive revelations, too,” he says, “You see what I’m saying?” 

***

By the late 1990s, Paul Glanville, the doctor who had come to Marble hoping to bring God into his medical practice, was hardly the only person questioning Marble’s leadership, and the Byrds’ true intentions for the community. According to letters written during this time, between 1997 and 1998 Anne Byrd excommunicated her brother and Legacy bandmate, Brad, and his family. (Requests for comment by Brad Bulla were not returned.) 

The excommunication drew the attention of Jay Grimstead, an evangelical scholar who had briefly lived in the Marble community and become known for pushing dominionism. Grimstead wrote several letters to the Byrds detailing his concern for what he saw as the community’s increasingly authoritarian structure. 

In one letter to Barry and Peacocke, from September 1997, Grimstead wrote that Marble “is a clear, ‘top down’ monarchy that is governed primarily by a queen, ‘Queen Anne,’” he wrote. “The people at Marble live in great fear of displeasing the Byrds, particularly Anne.” 

Grimstead also excoriated Barry for not publicly condemning Christian Identity, which he referred to as “weird, unbiblical stuff.” He was even being told by Marble members that the ideology was still being discussed in 1997. 

In January of the next year, he wrote to Anne and Barry: “Please respond in some way to the letter of grave concern wherein I told you I was receiving an increasing amount of evidence that Marble, under your leadership, was fast becoming an authoritarian cult,” he wrote.  Read more…

‘Something’s Got to Give’: Redux

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For the “Journeys” issue of Topic, Anna Holmes shares a reprint of a 1996 New York Times Magazine piece by Darcy Frey originally titled, “Something’s Got to Give.” The piece is a frenetic, testosterone-and-adrenaline-fueled ride-along with a fragile fraternity of New York air traffic controllers minding the busiest airspace in the United States. They’re charged with ensuring the safety of 7,000 flights per day using outdated and failing equipment while attempting to maintain their own sanity. “Every hour around here is 59 minutes of boredom and 1 of sheer terror.”

ALL THE WAY DOWN the bank of radar scopes, the air traffic controllers have that savage, bug-eyed look, like men on the verge of drowning, as they watch the computer blips proliferate and speak in frantic bursts of techno-chatter to the pilots: “Continental 1528, turn right heading 280 immediately! Traffic at your 12 o’clock!” A tightly wound Tom Zaccheo, one of the control- room veterans, sinks his teeth into his cuticles and turns, glowering, to the controller by his side: “Hey, watch your goddamned planes—you’re in my airspace!” Two scopes away, the normally unflappable Jim Hunter, his right leg pumping like a pneumatic drill, sucks down coffee and squints as blips representing 747s with 200 passengers on board simply vanish from his radar screen. “If the FAA doesn’t fix this goddamned equipment,” he fumes, retrieving the blips with his key pad, “it’s only a matter of time before there’s a catastrophe.” And Joe Jorge, a new trainee, scrambling to keep his jets safely separated in the crowded sky, is actually panting down at the end as he orders pilots to turn, climb, descend, speed up, slow down and look out the cockpit window, captain!

From the passenger seat of a moving airplane, the sky over New York City seems empty, serene, a limitless ocean of blue. But on a controller’s radar scope, it looks more like a six-lane highway at rush hour with everyone pushing 80. On the Sunday after Thanksgiving—usually the busiest air-travel day of the year—jets are barrelling toward Newark just 1,000 feet above the propeller planes landing at Teterboro. Newark departures streak up the west side of the Hudson River just as LaGuardia arrivals race down the east. And in the darkened operations room of the New York Terminal Radar Approach Control—the vast air traffic facility in Westbury, Long Island, that handles the airspace over New York City—the controllers curse and twitch like a gathering of Tourette sufferers, as they try to keep themselves from going down the pipes.

Then, for an instant, his mind wanders—don’t forget to pick up milk on the way home—and suddenly he looks back at the scope and it’s gone: no picture, no pattern, just a mad spray of blips (and more blips now than there were five seconds ago) heading—where? North or south? Climbing or descending? He can’t remember, and though he tries to catch up, he’s already behind, conflicts arising faster than he can react—one here, one there—jets streaking across the sky at 300 miles an hour, the controller’s stomach in knots because he knows he’s going down, nothing to do but leap from his chair, rip off his headset, and yell to his supervisor, “Get me out of here—I’m losing it!”

Sometimes it is the Federal Aviation Administration’s ancient equipment that messes with a controller’s head—a radar scope from the 1960s going dark with a dozen planes in the sky, or a dilapidated radio blowing out. A few years ago, a controller guiding ten jets in a great curving arc toward Newark suddenly lost his frequency just as he had to turn the pilots onto the final approach to the runway. Watching in helpless horror as his planes careered farther and farther off course, the controller rose from his chair with an animal scream, burst into a sweat, and began tearing off his shirt. By the time radio contact was reestablished—and the errant planes were reined in—the controller was quivering on the floor half naked, and was discharged on a medical leave until he could regain his wits.

Read the story

A Once and Future Beef

Still-life illustration of a plate containing a knighted cut of beef surrounded by Yorkshire pudding and a boat of gravy. (Illustration by Henry Stahlhut/Condé Nast via Getty Images)

Will Meyer |  Longreads | July 2019 | 10 minutes (2,501 words)

 

This year beef has become yet another proxy in the never ending culture wars. Such foot-soldiers as Sebastian Gorka and Ted Cruz have stoked the flames, claiming that Democrats are going to take hamburgers away and kill cows, replacing summer barbecues with Stalinism. Of course, Democrats have no such plans, at least not yet; at this point, the Green New Deal (GND) is merely a pipe dream and hardly an actionable reality. Still, the idea that beef could become contested is what provoked reactions. A fact-sheet about the GND mentioned the carbon emissions from the meat industry, and last year’s International Panel on Climate Change (IPCC) report specifically named animal emissions and land use as issues that need addressing in order to save the planet within its twelve-year timetable.

“The forecast is bleak,” Troy Vettese writes of the IPCC report in Boston Review: “[over] the course of the twenty-first century, as the global population balloons past ten billion, the Earth simply will not have enough land to expand production for crops, meat, dairy, forestry, biofuels, as well as for various schemes to reduce carbon dioxide, while simultaneously preserving biodiversity and safeguarding the food security of the world’s poorest people.” Half of the world’s habitable landmass, he notes, is used for agriculture. Of this, just more than two-thirds is used for grazing. Of the remaining third, a third of that is used for animal feed, and a fifth for biofuels. In short, a downright incredible amount of the world’s land is used for animal agriculture. And the market for cheap beef is rapidly expanding to include the growing middle class in places like India, China, and South America, further exacerbating the problem.

As the human species faces a fork in the road of epic proportions — with survival hanging in the balance — chances are we will have to confront not only the engines of industrial capitalism, but also the diet it has subsisted on. To do that, historian Joshua Specht has turned his attention to the making of what he dubs the “cattle-beef complex,” the industrial mechanism that birthed a Red Meat Republic; or so asserts the title of his new book recently out from Princeton University Press. The book follows the development of the modern beef machine from the second half of the 19th century until the first decade or so of the 20th. From frontier settlements and the dispossession of Indigenous land to the development of transportation technology and the rise of monopolistic “Beef Trusts,” Specht chronicles what amounted to a “democratization of beef” — wherein cheap and accessible beef for the many became a signal of American progress. Read more…

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…