Search Results for: poetry

On Silence (or, Speak Again)

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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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Memories Dressed Up With Wishes

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Grace Linden | Longreads | July 2019 | 8 minutes (2,211 words)

The year is 2017 in Siri Hustvedt’s seventh and most recent novel Memories of the Future, and the premise is seemingly straightforward. The novel opens with its protagonist, S.H., a 61-year-old successful author, thinking back on the year when she moved to New York City over three decades earlier. It begins, like so many other stories and dreams, with the memory of a young woman moving to New York holding fast to the hope that this was the start of her life:

Years ago I left the wide, flat fields of rural Minnesota for the island of Manhattan to find the hero of my first novel. When I arrived in August of 1978, he was not a character so much as a rhythmic possibility, an embryonic creature of my imagination, which I felt as a series of metrical beats that quickened and slowed with my steps as I navigated the streets of the city. I think I was hoping to discover myself in him, to prove that he and I were worthy of whatever story came our way.

The beginning, like many beginnings and like life itself, is extraordinarily ordinary. S.H. recounts how, that summer of 1978, she found a small apartment on 109th Street in the Upper West Side. She remembers outfitting her new home with two place settings in the hopes of conjuring a lover. She smoked and drank a lot of coffee at the Hungarian Bakery and tried to be the type of person who interesting things happened to or, at the very least, who got to witness interesting things happening first-hand. She was lonely but didn’t want to leave, and instead was determined to lose herself in the rhythms of the city she had long loved even before ever really knowing it. Read more…

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.

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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.

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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

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.

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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

Reading Lessons

Type by VectorLab / Getty, Illustration by Homestead

Irina Dumitrescu | How We Read: Tales, Fury, Nothing, Sound | punctum books | July 2019 | 12 minutes (3,118 words)

 

I have forgotten how to read. It isn’t the first time. I have forgotten before and I will forget again. In other words, I am still learning how to read.

“Read,” like “love” or “think,” has a thousand meanings pressed into one deceptively elementary verb. We use it in a way that tends towards simplicity. It is the connection of sounds and concepts to standardized squiggles, to trails of ink on squares of paper, scratches carved into sticks, glowing lines of curved neon, careful stitches poked through a tight canvas. It can seem a basic skill, at least to those who have left the learning of letters behind.

Watching my son learn it now, I begin to understand how daunting a task it is, even given a phonetic language with a small alphabet, even with all the plasticity of a child’s brain at his disposal. Learning to read is a years-long series of internalizing rules and their many exceptions, of tiny modulations and adjustments. At first I thought it would be a matter of recognizing 26 letters. Then I saw that he must navigate upper and lower cases, print and cursive, different typefaces and hands, the sounds rendered by certain combinations of letters, umlauts and double S’s, unmarked short and long vowels, and the vagaries of foreign words and their unpredictable pronunciations.

So much work requires attention. My son approaches the challenge of decoding the world with intense concentration, straining to squeeze out meaning from each word and image. He is spellbound by anything legible, whether a phrase in bold, clear type or a comic strip that communicates just enough plot to fascinate, and will stare at it for what feels like ages. He is laboring hard, I know, but I still envy his power of absorption. Sometimes it feels like my practice as a reader has made me faster, but not consistently better. When I think of my own journey of learning to read, I am in fact thinking of a long process of learning and forgetting how to be with texts slowly, intimately, deeply.

Read more…

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…

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.

Read more…

A Minor Figure

Ada Overton Walker, 1912. (Library of Congress)

Saidiya Hartman | An excerpt adapted from Wayward Lives, Beautiful Experiments: Intimate Histories of Social Upheaval | W. W. Norton & Co. | 25 minutes (6,922 words)

The small naked figure reclines on the arabesque sofa. Looking at the photograph, it is easy to mistake her for some other Negress, lump her with all the delinquent girls working Lombard Street and Middle Alley, lose sight of her among the surplus colored women in the city, condemn and pity the child whore. Everyone has a different story to share. Fragments of her life are woven with the stories of girls resembling her and girls nothing like her, stories held together by longing, betrayal, lies, and disappointment. The newspaper article confuses her with another girl, gets her name wrong. Photographs of the tenement where she lives regularly appear in the police briefs and the charity reports, but you can barely see her, peering out of the third-floor window. The caption makes no mention of her, noting only the moral hazard of the one-room kitchenette, the foul condition of the toilets, and the noise of the airshaft. The photograph taken of her in the attic studio is the one that is most familiar; it is how the world still remembers her. Had her name been scribbled on the back of the albumen print, there would be at least one fact I could convey with a measure of certainty, one detail that I would not have to guess, one less obstacle in retracing the girl’s path through the streets of the city. Had the photographer or one of the young men assisting him in the studio recorded her name, I might have been able to find her in the 1900 census, or discover if she ever resided at the Shelter for Colored Orphans, or danced on the stage of the Lafayette Theatre, or if she ended up at the Magdalene House when there was nowhere else to go.

Her friends refused to tell the authorities anything; but even they didn’t know how she arrived at the house on the outskirts of the Seventh Ward, or what happened in the studio that afternoon. The Irish housekeeper thought she was the black cook, Old Margaret’s, niece, and, neglecting her work as they were wont to do had wandered from the kitchen to the studio. Old Margaret, no kin to the girl, believed that Mr. Eakins had lured her to the attic with the promise of a few coins, but never said what she feared. The social worker later assigned to the girl’s case never saw the photograph. She blamed the girl’s mother and the slum for all the terrible things that happened and filled in the blanks on the personal history form, never listening for any other answer. Age of first sexual offense was the only question without certain reply.

From these bits and pieces, it has been difficult to know where to begin or even what to call her. The fiction of a proper name would evade the dilemma, not resolve it. It would only postpone the question: Who is she? I suppose I could call her Mattie or Kit or Ethel or Mabel. Any of these names would do and would be the kind of name common to a young colored woman at the beginning of the twentieth century. There are other names reserved for the dark: Sugar Plum, Peaches, Pretty Baby, and Little Bit — names imposed on girls like her that hint at the pleasures afforded by intimate acts performed in rented rooms and dimly lit hallways. And there are the aliases too, the identities slipped on and discarded — a Mrs. quickly affixed to a lover’s name, or one borrowed from a favorite actress to invent a new life, or the protective cover offered by the surname of a maternal grandmother’s dead cousin — all to elude the law, keep your name out of the police register, hold the past at a safe distance, forget what grown men did to girls behind closed doors. The names and the stories rush together. The singular life of this particular girl becomes interwoven with those of other young women who crossed her path, shared her circumstances, danced with her in the chorus, stayed in the room next door in a Harlem tenement, spent sixty days together at the workhouse, and made an errant path through the city. Read more…

The Offer of a Two-Night Stand, When Just One Would Do

Illustration by Courtney Kuebler

Suzanne Roberts | Longreads | Month 2019 | 18 minutes (4,525 words)

“I crossed the ocean and then the island for you,” Sancho said when he found me at the bar in Rincon, his white teeth shining like the keys of a piano. His small blue backpack was slung over his shoulder. He pushed back his long dread-locks and kissed me. “And it wasn’t easy,” he continued. “I had to take the ferry and then the wah-wah, and finally hitch a ride to Rincon. So here I am.”

“Here you are,” I said and smiled. We stood on the deck of the small noisy bar. The band had just taken a break, and my friend Tracy was inside talking to the guitarist.

“You called me, and I knew I had to come,” he added.

“How did you know I’d be at the Tamboo bar?” I asked.

“I knew,” he said and smiled. “This is the place to be.”

“And I’m always in the place to be,” I joked.

“You are,” he said with a seriousness that made me laugh harder.

I felt giddy at the idea of a man crossing an ocean and then an island for me, even as small as Puerto Rico was. We walked from the deck and into the sand, and under the palms watched the waves roll, crash, foam, and retreat onto the beach. I carried my sandals. The night filled with the sounds of crickets and coquis, the tiny singing frogs, and the smells of salt and the sweet decay of seaweed. Each wave shined blue-green, the crashing causing the bioluminescence, the same flash we’d seen while kayaking in the bay a few days earlier in the “Bio Bay” of Vieques.A blue-green glow zippered across the sand with each wave, the foam a patchwork of neon.

That’s when Sancho kissed me, and his broad mouth and soft lips took me by surprise, even though I’d been waiting two days, or maybe my lifetime, for a kiss to happen like that, on the edge of an island, between two palms, under a sky canvassed with stars. My toes splayed out onto the sand, the ground below me, shifting.
Read more…

Remembering João Gilberto

Dario Zalis/Contexto/Getty Images

Music is contradictory. Highly personal expressions can become hugely popular. Tradition can be reinvented as something completely new. Understatement can often get a point across the most forcefully. Few musicians embody these contradictions more than composer, singer, and guitarist João Gilberto, who died on July 6, at age 88.

Gilberto almost single-handedly invented bossa nova — which translates from Portuguese as “new wave” — in the mid-1950s. He did so while isolated, during an ebb in his developing career. His intimate way of singing and playing would inspire every composer in the bossa nova genre, leading to incredible commercial success and the brief, if dazzling, resuscitation of jazz as a popular art form in America.

João Gilberto do Prado Pereira de Oliveira was born in Juazeiro, in the Brazilian state of Bahia, on June 10, 1931. From an early age he was utterly charming and only concerned with music. Singer Maria Bethânia described him as “simply … music. He plays. He sings. Without stopping. Day and night. He is very, very strange. But he is the most fascinating being, the most fascinating person, that I have encountered on the surface of the earth. João, he is mystery. He hypnotizes.”

After moving to Rio de Janeiro, Gilberto sang with the vocal group Garotos da Lua for a while, but in 1951 he was fired for turning up late for gigs — or sometimes not turning up at all. Never having a place of his own, he was a permanent houseguest for a revolving set of friends. “It was always understood by his hosts that he would never be asked to participate in paying the rent or covering other household expenses,” Daniella Thomposon wrote for Brazil magazine. “Occasionally he would bring home some fruit (tangerines were his favorites), but his most significant contributions were his surpassingly intelligent conversation and the captivating music he played.” Gilberto grew out his hair, wore shabby clothes, continually smoked marijuana, and refused to get a real job.

By 1956, Gilberto began an eight-month stay with his sister and her husband in Diamantina. Seldom changing out of his pajamas, he installed himself in the tiled bathroom, as much for privacy as acoustics, practicing guitar and voice nonstop. It was here at age 25 that he created bossa nova, largely by reducing the older musical form of samba down to its essence.

“I think João Gilberto did it like this,” guitarist Baden Powell once said. “He just took the rhythm of the tamborims [a small tambourine-like drum] of the Samba Schools to the exclusion of the other percussion instruments. That’s the clearest rhythm you hear in it all. He took out all the rest.”

Gilberto also began singing more quietly and without vibrato. He changed his phrasing and used his voice as its own percussion instrument — sometimes as a complement to the guitar, sometimes creating rhythmic tension.

Despite the musical breakthrough he accomplished in his sister’s bathroom, Gilberto’s obsessiveness caused concern. His sister and her husband sent him to live with his parents in Juazeiro.

Afraid of being ridiculed for his new vocal style, Gilberto practiced on the banks of the São Francisco river, where he wrote a song mimicking the sway of the washerwomen as they walked by, carrying baskets of laundry on their heads. He used his new vocal and rhythm techniques to compose “Bim-Bom,” and so it is considered by some to be the first bossa nova song.

Gilberto’s father, unimpressed with his abilities and embarrassed by his son’s lack of respectability, had him committed to an asylum. During one interview, Gilberto stared out the window. “Look at the wind depilating the trees,” he said. When reminded that trees have no hair, he responded, “And there are people who have no poetry.” He was released after one week.

Gilberto returned to Rio and renewed his friendship with musician Antônio Carlos “Tom” Jobim, then a composer and arranger for Odeon Records. Jobim arranged his song “Chega de Saudade” for Gilberto to record, but the artist’s perfectionist streak held up the process: Gilberto chided the musicians for little mistakes, made the unheard-of demand for separate microphones for his voice and guitar, and argued with Jobim about the chord progression. “Chega de Saudade” and “Bim-Bom” were finally cut on July 10, 1958. After a slow start, the single became a regional success.

American guitarist Charlie Byrd heard Gilberto’s music in 1961 while on a Jazz Ambassador tour organized by the State Department. Byrd returned home with some Gilberto/Jobim bossa nova albums, which he played for saxophonist Stan Getz. “I immediately fell in love with it,” Getz remembered. “Charlie Byrd had tried to sell a record of it with I don’t know how many [record] companies, and none of ‘em wanted it. What they needed was the voice — the horn.”

Getz and Byrd released Jazz Samba in April 1962. It entered the Billboard pop album chart in early March and ultimately peaked at No. 40. Getz earned a Grammy for his performance of Jobim’s “Desafinado.” The bossa nova craze had begun, and its definitive statement would come two years later, when Getz collaborated with the genre’s originator.

 

“I’m not a sociologist, but it was a time when people in the States wanted to turn to something other than their troubles,” João’s wife Astrud Gilberto said in 1996. “There was a feeling of dissatisfaction, possibly the hint of war to come, and people needed some romance, something dreamy for distraction.” The eight tracks on the 1964 album Getz/Gilberto provided just that. Getz’s lyrical phrasing was a match for Gilberto’s intimate vocal. Jobim’s understated piano proved a perfect complement. Jazz critic Howard Mandel called the album “another tonic for the [Kennedy] assassination’s disruption, akin for adults to the salve upbeat the Beatles had provided for teenagers after their appearance on The Ed Sullivan Show in February 1964.”

Jobim cowrote several compositions on the album, most notably its opener “The Girl From Ipanema.” João sang the first verse in Portugese; Astrud the second in an English translation.

Both the single and the album were an astonishing success. Getz/Gilberto spent almost 100 weeks on the charts and won four Grammys, including Album of the Year. “The Girl From Ipanema” is second only to the Beatles’ “Yesterday” as the most recorded song.

Gilberto went on to release albums for five more decades, making solo records as well as collaborating with American jazz greats like Herbie Mann, and a new generation of Brazilian musicians including Gelberto Gil and Caetano Veloso. He became a cult figure in Japan.

What might be hard to understand is that the João Gilberto who locked himself away in a bathroom and eschewed a day job is the same man who would go on to change Brazilian — and popular — music. He was fortunate to have been surrounded by people who valued him and trusted his artistic vision.

In the mid-’50s, Gilberto played, or sometimes just held court, at the Clube de Chave in Porto Alegre, appearing at any hour with his guitar. After being asked why he never finished a song, he admitted to not liking his guitar’s steel strings. The patrons, many of whom had changed their sleeping habits to conform to his, chipped in and bought him a nylon-stringed instrument. This one also wasn’t quite to Gilberto’s taste. When it was exchanged for another, he began a months-long residency.

Musicians, like music, can be contradictory. Sometimes their most idiosyncratic expressions are reflections of the universal. “João Gilberto does not underestimate people’s sensitivity,” Jobim wrote in the liner notes to Gilberto’s first album. “He believes that there is always room for something new, different and pure which — although it may not seem so at first sight — may become, as they say in the jargon, highly commercial. Because people understand love, musical notes, simplicity, and sincerity, I believe in João Gilberto, because he is simple, sincere, and extraordinarily musical.”

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

Editor: Aaron Gilbreath; Fact-checker: Ethan Chiel