Search Results for: Frank Rich

White Looks

Getty / Illustration by Homestead Studio

Soraya Roberts | Longreads | August 2019 |  8 minutes (2,132 words)

 

They have a deep emotional investment in the myth of “sameness,” even as their actions reflect the primacy of whiteness as a sign informing who they are and how they think.

—bell hooks, Black Looks (1992)

 

I’m experiencing some deep angst about this essay. That anxious feeling where you’re standing on the edge of a cliff on a perfect day — no wind, no sound, no bird of prey — and you’re almost certain you’ll throw yourself off. Every time I email a black critic for this article, it’s even worse because I can’t even tell if I’ve jumped or not. Like I’m dead at the bottom of that cliff, but I have to wait for a reply to be informed. That I’m dead. This is what white people call “white fragility,” right? “Socialized into a deeply internalized sense of superiority that we either are unaware of or can never admit to ourselves, we become highly fragile in conversations about race,” Robin DiAngelo wrote. (As book critic Katy Waldman noted, many people of color could have written White Fragility in their sleep.) I am in fact biracial — my father is white, my mother is Pakistani (she grew up in England) — but I pass. I barely identify with my Pakistani side, except when I see a group of Pakistani people. Then I’m like Hey. I know you. (Even though I don’t.) I don’t think this when I see a group of black people. Although, what’s that line in Ibram X. Kendi’s How to Be an Antiracist? “To be an antiracist is to realize there is no such thing as Black behavior.” To be an antiracist is to realize there is such a thing as White behavior.
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Looking for Carolina Maria de Jesus

Illustration by Bex Glendining

Tarisai Ngangura | Longreads | August 2019 | 18 minutes (4,506 words)

Here in the favela, almost everyone has a difficult life to live. But I am the only one who writes of what suffering is. I do this for the good of the others.

 Carolina Maria de Jesus, Quarto de Despejo

* * *

In 1960, at the age of 46, Carolina Maria de Jesus published her first book, Quarto de Despejo: Diário de uma Favelada (Child of the Dark in English). It’s comprised of diary entries written on scraps of paper and assembled into a memoir about life in Canindé, a favela community in the Brazilian city of São Paulo. The book sold more than 10,000 copies in less than a week, was eventually translated into 16 languages, and distributed in 46 countries, making Carolina Maria one of Brazil’s most widely read authors. And for a while, the most famous person in the country. 

Starting in the late 1800s, the very first favelas, known as bairros-africanos, were inhabited by formerly enslaved people. Today, the country’s Institute of Geography and Statistics calls them “sub-normal clusters.” Favelas lack basic sanitation, electricity, and health facilities and are located primarily in city centers. After Quarto de Despejo’s instant success, Carolina Maria became a fleeting cause célèbre for the rights of favelados.

Carolina Maria de Jesus was born in the state of Minas Gerais, about 500 miles north of Rio de Janeiro, and came into the world some time between 1914 and 1921. Like many Afro-Brazilians born during this time, she didn’t have a birth certificate. She grew up with her mother, grandfather, younger brother, and later her stepfather in the town of Sacramento, where most homes were small and functional, to guard from rain and sun. Her father was a street performer who abandoned the family soon after Carolina Maria was born. Her mother cleaned houses and washed clothes for white families who lived on farms bordering the city. She died when Carolina Maria was in her early twenties.

After her mother’s death, Carolina Maria moved around trying to find her footing before settling in metropolitan São Paulo. She also made a living cleaning homes for wealthy white Brazilians, but after becoming pregnant, she was barred from the house she worked at and forced to move to a favela. She chose the neighborhood of Canindé for its proximity to a junkyard, where she sold bags of collected paper and scrap iron for pennies. Black people who were lighter skinned were referred to as morenas and morenos and had a greater measure of respect and access to more jobs, better restaurants, libraries, and social mobility. Carolina Maria, a dark-skinned black woman, was an outsider in more ways than one.

After the surprise success of Quarto de Despejo, she traveled across Brazil’s states, signing books and giving public talks on the dire conditions of favelas. The press called her a rags-to-riches heroine: the one who had been born surrounded by garbage and yet became a writer. Carolina Maria became a reluctant (and ultimately unwilling) spokesperson for “bootstrap success” — her image vaunted to encourage others to let nothing keep them from their dreams. Not crippling debt or inaccessible education. Definitely not hunger, and most importantly, not racism. In the years after Carolina Maria’s debut, nine more books followed; six were published after her death in 1977. But the renown that came from her first frank writings on poverty wouldn’t be repeated.  


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In the afterlife of the global slave trade and colonialism, black history is a study of spaces, silences, question marks, and asterisks. Growing up in Zimbabwe in the early 2000s, I learned of colonialism as if it had been a momentary blip in my country’s history, not a profound interrupting occurrence whose effects would forever shape how I moved and saw the world. When I left home for university in Toronto, I learned of Canada’s history as a celebrated haven for runaway slaves, but did not hear of Africville, a historically black community in Nova Scotia destroyed by provincial and federal negligence. I noticed the same kind of erasure when I arrived in Brazil’s city of Salvador, the capital of Bahia state, which I’d chosen to make my home base as I started my career in freelance journalism in 2016.

Of the nearly 5 million Africans brought to the country during the transatlantic slave trade (10 times more than brought to North America), the first landed in Salvador, one of the oldest slave ports in the Americas. It’s where the Malê revolt erupted, which Brazilian historian João José Reis called “the most significant slave revolt in Brazil.” Brazil has more African descendants than any other country in the world except Nigeria — almost 51 percent of the nation’s population is black or mixed race. On a national scale, Salvador is the state capital with the highest number of Afro-Brazilians, with more than 80 percent of its people identifying as black or brown. The cadence and speech of Soteropolitanos (residents of Salvador) is audibly tinged with Bantu vocal patterns, and the moda (fashion) would not be out of place in pattern-rich Senegal. Local food is stamped with unmistakable West African flavors and beloved street snacks include acarajé, a deep-fried black bean bun that is also found in Nigeria and Ghana. Dende oil, an extract from the fruit of oil palms that leaves distinct orange marks on clothing, is an integral part of every meal and was also brought over from Africa’s West. 

Carolina Maria, a dark-skinned black woman, was an outsider in more ways than one.

In the months following my arrival, I searched for writers to guide me through Brazil. Yet the authors I discovered online and on bookshelves did not reflect the faces I saw around me. When I refined my search, specifically noting ‘Afro-Brazilian’ in my digital prompt, I learned about Maria Firmina dos Reis, a prominent abolitionist and teacher; Abdias Do Nascimento, the pan-Africanist, playwright, and founder of Teatro Experimental do Negro (TEN); and Alzira Rufino, an activist and the first Afro-Brazilian woman to create a support service for female survivors of domestic violence. These writers exposed truths about their country’s treatment of black people, countering the myth of Brazil’s diverse, racial democracy. I also found Carolina Maria de Jesus, whose story was not only compelling, but was also to some degree a reflection of my own. I saw familiar breaks and patterns in her thoughts, dreams, doubts, and disappointments. 

Haunted by questions centuries older than her years, Carolina Maria constantly found equilibrium to be out of reach, even when it seemed as though she had finally achieved what she longed for. She landed at a crossroads so common to the “successful” black creative: a rapid abundance of opportunities contingent on total acquiescence, or nothing at all. She achieved renown for a season, then fell into obscurity and back, further still, into near poverty.  

It’s been more than 40 years since her death, and I wonder if anything has truly changed for black women anywhere who long for their art to be what takes care of them.

* * *

In 1962, The New York Times Book Review called Quarto de Despejo “a rarely matched essay on the meaning and feeling of hunger, degradation and want.” Carolina Maria’s debut pulled no punches and displayed no illusions about life in the favela. There was no long-suffering acceptance of martyrdom because a better life lay above. She’d hated where she lived, and even more so she hated those who allowed such places to exist. Quarto de Despejo literally translates to “room of garbage.” She wrote about culpability — whose fault was it that some people had to live among the garbage? Sometimes she blamed the people themselves, who, according to her, were lazy, drunk, vulgar, and illiterate. “I know very well there are contemptible people here, persons with perverted souls,” she wrote. This earned her no love from progressives, who found her sentiments self-righteous and demeaning to the poor. When she didn’t find fault with those around her, she chalked it up to sheer bad luck: “Is there no end to this bitterness of life? I think that when I was born I was marked by fate to go hungry.” More often, her mind would circle back to one answer — politicians. “When a politician tells us in his speeches that he is on the side of the people, that he is only in politics in order to improve our living conditions, he is well aware that touching on these grave problems, he will win at the polls,” she wrote. “Afterwards he divorces himself from the people. He looks at them with half-closed eyes, and with a pride that hurts us.” This was an entry she wrote on May 20th, 1955, a day she found herself particularly hungry and contemplating her place in a world where she was an “object banished to the garbage dump.”

 The 1950s were, on the surface, an auspicious time for Brazil. Under the presidency of Juscelino Kubitschek de Oliveira (like Carolina Maria, a mineiro, born in the state of Minas Gerais), the country’s economic and political stability grew. Edson Arantes do Nascimento, soon to be known as Pelé, became an international soccer star. Bossa nova was born and on its way to becoming one of the country’s most distinctive musical innovations, with Johnny Alf’s “Eu e a Brisa” drifting in and out of bars across the country. For Carolina Maria, none of this mattered. The police regularly intimidated, arrested, and detained favela dwellers. Corruption was rampant at social services, and social elevation was only possible if she married a white man and had lighter-skinned children. All this she wrote in her diaries, sharing her confusion, disgust, and anger. In her eyes, to be poor and hungry was an undeserved burden for anyone, and it was a national shame she cast a glaring light on.

* * *

Carolina Maria had three children, and her only daughter, Vera Eunice Lima de Jesus, born in 1953, is the writer’s closest living relative. As the public face of her mother’s literary works, Vera Eunice speaks at roundtable discussions where the work is featured, but she doesn’t own the rights to any of it. 

Vera Eunice also accommodates writers like me, who come to her for answers about her mother’s life of contrasts. It’s been more than half a century since she lived in Canindé, and while some memories elude her, others she recalls as though they happened yesterday. She told me she’d barely turned 7 when fame came knocking at their barraco. Made of pieces of discarded timber and asbestos, it was stuffed with bits of plastic and paper to act as both insulation and ventilation. Carolina Maria had built it herself. During the summer months, it was unbearably hot inside the cramped home, with the asbestos emitting heat all day. São Paulo is also known for its torrential rainfall, so when it poured the roof would leak, drenching their two mattresses. In that small shack Vera Eunice lived a life stifled by scarcity. “We would eat once a day. My oldest brother was a teenager and he was always hungry,” she said. 

These writers exposed truths about their country’s treatment of black people, countering the myth of Brazil’s diverse, racial democracy.

Like her mother’s writing style, Vera Eunice spoke to me in a direct, almost dry way — her voice strong and measured. “One day, my mother and I went out to look for food. We were passing this house and a white woman came running out and said she had a gift for us. My mother was so happy because we had not been able to find anything,” she said. “The gift was wrapped in newspapers so we rushed home and my mother quickly tore it open to see what it was. It was a pile of rats.” Carolina Maria had recounted this particular interaction in her diaries; it was a moment that scarred both mother and daughter. For the writer, particularly, this interaction showed that to outsiders she didn’t simply live amidst garbage, she too was disposable.

Audálio Dantas, a young journalist working for the newspaper Diário da Noite, spent a week in Canindé in 1958. He was researching life in the favela for what he hoped would be a story on the recently built playground donated by a politician soliciting votes from the poor. As the legend goes, he came across Carolina Maria threatening to put some neighbors in her diaries if they didn’t stop mistreating a group of children who were having fun on the swings. Intrigued, Dantas asked to see some of her work. He took a couple of her entries to his editor, and soon after, excerpts were published in the paper to great fanfare. Dantas later became bureau chief of O Cruzeiro, the leading weekly magazine from Rio de Janeiro. Although the newspaper exposure led to a book deal for Carolina Maria, it also attracted a barrage of harassment and a backlash that was unceasing.  

After the book came out, rumors began to circulate of Carolina Maria’s difficult disposition. Her politics during the book’s press tour failed to garner any favor when listeners realized that what she had written about sexism, political corruption, and poverty was not mournful musings, but rather her true convictions. She found it necessary to call out racial prejudice and in a country whose social stability and national identity was built on the idea of colorblindness through race mixing, her words were seen as not only inflammatory, but also blatantly false. When the novelty of a published black favelada wore off, the press coverage grew harsh; critics from well-known papers resorted to tabloid-like spitefulness. A writer from the paper O Globo called her “uncouth.” A literary critic from the largest newspaper in the country, Folha de São Paulo, found her work after Quarto De Despejo to be “pastiche,” and a later article would run in that same paper with the headline, “Carolina: Victim or Crazy?”

In the publishing industry, some writers are allowed to be all the messy parts of themselves, even when their behaviors and beliefs border on violent. The perceived strength of their work assures them a mythical cachet that leaves them faultless. This free pass was not given to Carolina Maria. She was not allowed to be mercurial and received little empathy. Some literary critics and political pundits questioned her competence, and she was forced to prove her legitimacy for the duration of her career. Those who want to protect her legacy face a similar interrogation. “Look, my mother wrote everything herself. We slept in the same bed and every night I would hear her get up to write,” Vera Eunice told me. “If we had no lights she would use candles and continue writing.” In 2012, Audálio Dantas talked about the events leading up to the publication of the first entries, which became the book Quarto de Despejo. “I had not written a single line. The story was in those books,” he said.

When her first press tour came to an end, Carolina Maria wanted to step away from diaries, to write novels, poetry, and to be taken seriously as an author. Her publishers, however, wanted her to keep doing what had amazed before. She refused, and for a while, she stuck to her guns, because for the first time she had the privilege to say no. Money had come in, and four months after Quarto de Despejo debuted, Carolina Maria and her children were able to leave the favela for the middle-class neighborhood of Santana, a 30-minute train ride from Canindé. 

* * *

To support Quarto de Despejo, Carolina Maria traveled so often and so extensively that airport workers would hug her at the arrival terminal. “Every day cards come from international editors who want to translate the book. Even I am astonished at the impact,” she wrote. She was happy, almost forcefully so. The kind of joy that’s laced with fear and doubt but is also desperately hopeful.

After settling down in Santana, Carolina Maria set about creating a haven for herself and her small family. In Canindé they’d lived without electricity, relying on candles when she could afford to buy them. In her new home, she put in 14 light fixtures. She bought shoes for Vera Eunice, who had always hated walking barefoot, and her two boys, João José and José Carlos stopped acting out. “I used to think João was rude. But now that we have food in the house he has transformed,” she wrote in Casa de Alvenaria, her second book, also a diary published just under a year after the release of Quarto de Despejo. “He has left rude João to be nice João. Hunger really makes people neurótico.” Memory of life prior to the book was still very clear and so too was the relief and gratitude for her new beginnings. As in Canindé, she still woke up before the sun, but now there was no hand-wringing as she worried about what she would feed her children. In Santana, when João José, José Carlos, and Vera Eunice woke up, they had breakfast with bread and their tea with milk and sugar. Once the children left for school, she would begin preparations for lunch, then dinner. She didn’t have to beg from people’s homes anymore or dig through the garbage, fearful of eating something dosed with poison by store owners attempting to dissuade favelados from searching for food. Carolina Maria could now go out to the butcher and choose any cut of meat that she wanted. She bought fresh fruit and vegetables from the market. “My life is now velvet. Now I have food. I have a house. I have things to wear,” she wrote. 

When the novelty of a published black favelada wore off, the press coverage grew harsh; critics from well-known papers resorted to tabloid-like spitefulness.

Carolina Maria could have chosen to write only the good things that came her way when she left the favela, but in Casa de Alvenaria, she wrote about her new life as bluntly as she had about her old one. She saw just how inflexible the middle-class reality was to her presence. The white maid she had hired constantly made it known that she believed their roles should be reversed, and Carolina Maria made note of her complaints: “My God in the sky. This is the end of the world. God is punishing me. The world has capsized. I, a white person, have a black boss.” Her new neighbors treated her with contempt and saw her presence as an eyesore. “I am sad and not content because when something happens here, everyone always blames my children,” she wrote. Outside of her problems at home, she also had trouble opening a bank account because she didn’t have the proper ID. She opened a joint account with Dantas, who was now not only her editor but also her agent. She had money, but anti-blackness does not dissolve with improved social status. It stings differently, but is noticeable all the same. 

While many critics saw Casa de Alvenaria as the inconsequential ramblings of someone with no direction, it was here I saw Carolina Maria most clearly. She was painfully aware of what both the press and her peers thought and said about her, so she attempted to tread the tightrope carefully. She knew people were watching and wilfully betting on her failure, so she wanted to write without risking the welfare of her children. “I am not crazy about this idea of writing my diary based off my actual life now. I am writing against the rich. They are powerful and they can destroy me,” she agonized. 

Her first book had kicked up the reactionary dust of white guilt, and she tried to settle what her words had stirred up, while making it known that her success did not end social inequality. Carolina Maria had written her second book while caring for her three children, showing up to book signings, pleasing her agent and publisher, and trying to maintain her own sense of self. She was exhausted. “Due to the success of my book I am now regarded as a bill of exchange. A representation of profit. A gold mine,” she wrote in Casa de Alvenaria. The freedom money should have purchased now felt like a cruel joke, and her feelings of despair culminated in one of the saddest thoughts present in her known works: “Looking at the sky, if I had wings I would lift my children up there, one at a time, and never again return to the earth.” She had few friends and those who came to see her would ask for money, which she usually gave. Carolina Maria had done what we’ve all been told needs to be done to be a good citizen, to be happy and fulfilled, far away from hardship: She had worked hard. And now here she was, uncomfortable in her own brick house. 

* * *

Carolina Maria de Jesus passed away in 1977 in Parelheiros, three hours from Santana and Canindé. She had moved there almost a decade earlier, after she could no longer afford to live in Santana. It was a poor, rural neighborhood on the periphery of São Paulo, known for its heavy pollution. She died from respiratory complications, exacerbated by the industrial waste sites surrounding her home.

When memorializing her life, the writer of her obituary in Jornal do Brasil called her vassoura de papel — a paper scavenger. This was in reference to her work collecting scrap paper and iron, which she’d had to start again after she moved. She’d kept writing and financed the three books published before her death with the royalties from her first book. But she died poor. Not like how she started, but not how she should have been. Carolina Maria had signed a financially crippling contract and she saw very little of the money received from the international licensing of her books. 

‘Looking at the sky, if I had wings I would lift my children up there, one at a time, and never again return to the earth.’

For Tom Farias, author of Carolina: Uma Biografia, a book on the writer released in 2017, Carolina Maria deserves to be highlighted in the same Brazilian canon as Jorge Amado, Clarice Lispector, and Paulo Coelho. “She was more than just her diaries, she wrote plays, songs, and poetry. She was an artist,” he said.

Since her death, she has been often acknowledged during Novembro Negro — Brazil’s Black History Month, when the achievements of living and dead Afro-Brazilian leaders are brought center stage. But on a day-to-day basis, it’s mostly other black women who have kept her memory alive. In Salvador, Denise Ribeiro taught a popular class at Universidade do Estado Da Bahia (UNEB) on the social relevance of Quarto de Despejo in 2008. A health and nutrition professor and former coordinator for the Municipal Health Secretariat of Salvador, she’s spent more than three decades studying health from a myriad of perspectives, with a focus on black feminism, traditional communities, and African spirituality. In her home, the names of well-known Afro-Brazilian women authors lined the spines of her library: Fatima Oliveira, Djamila Ribeiro, and Conceição Evaristo, alongside other voices from the diaspora such as Toni Morrison, Angela Davis, Alice Walker, Audre Lorde, and Chimamanda Ngozi Adichie. Carolina Maria was a fitting addition among the company of black women whose work forced the world to center blackness, even when it seemed inconceivable. “Carolina Maria had such a hard life and so much happened to her in that time,” Ribeiro told me. “Because I teach health, her book was so relevant to the things that affect the way black people live, and the reality is that her life is the life of so many people today. Nothing has changed at all.” 

Not that long ago, in March 2018, Marielle Franco, a queer Afro-Brazilian city councillor from Rio de Janeiro, was assassinated in her car just hours after speaking at an event for black women’s empowerment. Franco was born in Complexo da Maré, a Rio neighborhood made up of 16 favelas. It’s considered one of the largest communities in the city with almost 150,000 residents. In 2017 and 2018, more than 40 young people, the majority of them black and under 24, were killed during police raids in Maré, which happen frequently. In May of this year, eight people were left dead after another police operation in the area, which forced children to search for cover so they wouldn’t be struck by bullets. Access to electricity remains a problem with many using what’s locally known as gato, or cat. This device, made up of manually inserted wires, is attached to city electrical supplies and it diverts energy toward the overlooked favelas. Six years ago, the monetary amount of the diverted electricity came to $500 million in U.S. dollars. Prone to explosions, gatos are dangerous creations, but for many families, it is too expensive to get onto the formal electrical grid. Carolina Maria faced the same dilemma while living in Canindé during the 1950s.

* * *

Stories of black women creators whose work shook the world but who died underappreciated never cease to raise in me a familiar madness and a self-contained rage. It’s a hollow pain and a fear that hovers over my own hopes and dreams. But there is also a separate, wild appreciation for the existence of things deemed impossible. It is utter madness that Carolina Maria was able to write books at all, and it is madness that she made it enough for a girl from Zimbabwe to one day discover her work and see herself. In Carolina Maria’s writings, I saw a life that was lived even when living felt more like fighting.

During my last conversation with Vera Eunice she asked me to help her petition for a Carolina Maria de Jesus archive in the southern city of Curitiba. She also wanted my help collecting original print photographs of her mother because she has none. Most are in the hands of Dantas’s grandchildren. “Dantas took a lot of pictures of my mother,” she said. “Before he died we had been negotiating about his giving them to me, and now it’s even harder.” When I reached out to the Dantas estate to ask about the photographs of Carolina Maria, his executor did not offer a response.

In one of the most recognizable shots I found of Carolina Maria online, she is looking directly at the camera, head slightly tilted to the side. Her black skin, deep and smooth, her hair under a loosely tied headwrap. She spent most of her life unseen, living in shadows, and even when the light came, it didn’t brighten as much it blinded. She was the mirror, and what she reflected about her world was so startling it took time to properly process what she had released. When the noise died down, her unexpected work became an appalling reminder of a reality many would have rather just forgotten. In this picture, it’s as if she knew that she would not have many opportunities to really be seen, so she made it count. She looks determined, a little sad, a little proud. She was still, and for a moment she forced us to be still. Without anyone expecting it, a woman from the favela wrote a book that read an entire nation.

 

* * *

Tarisai Ngangura is a journalist and photographer. She documents black lives around the globe — their histories, legacies and movements. Her work has appeared in Rolling Stone, Jezebel, The New York Times, The Globe and Mail, New York Magazine, Hazlitt, VICE and Catapult.

Editor: Danielle A. Jackson

Copy editor: Jacob Z. Gross

Fact checker: Samantha Schuyler

Pages You Can Dance To: A Book List

People Images / Getty

Brittany Allen  | Longreads | August 2019 | 10 minutes (2,730 words)

 

In 1974 Walter Thompson, a Berklee-trained bandleader, moved to Woodstock and made up a language. A fan of improv, Thompson initially designed forty signs for structuring a live composition. With one gesture, he could single out a group in his orchestra (like “Woodwinds”). With another, he could instruct said group to hold a long note (“Long Tone”), match one another’s phrasing (“Synchronize”), or tell players to dit dit dit out a series of staccato bursts (“Pointillism”). Wham, Blam, thank you ma’am: a new song, on the spot.

Forty years later, directors working with all kinds of performers — actors, dancers, and musicians — still employ Thompson’s conducting shorthand to devise material. The language has a name now: soundpainting, a term I find almost unbearably lovely. At my (blessedly experimental) college I studied soundpainting, stage pictures, lyric essays, many radiant paradoxes that suggested trespass between one mode of making and another. But soundpainting, this word lingers. What a pure reminder that our creative borders are porous by definition. That some of our metaphors ought to be mixed.

Either Martin Mull or Frank Zappa or Elvis Costello or someone else entirely once may have said, “writing about music is like dancing about architecture,” and meant this as a cut. But like Thompson, I chafe against the arbitrary border. In this reader’s opinion, there are some excellent books about music. But on the synesthetic end of the exercise, there are also miraculous books suffused with music, there are rhythmic books that dit dit dit a forever impression on your skull. A man in Woodstock believes you can paint with sound. Well, I know for a fact you can dance to pages. Read more…

Nashville contra Jaws, 1975

Paramount Pictures, Universal Pictures, Illustration by Homestead

J. Hoberman | An excerpt adapted from Make My Day: Movie Culture in the Age of Reagan | The New Press | July 2019 | 30 minutes (8,492 words)

June 1975, six weeks after Time magazine headlined the Fall of Saigon as “The Anatomy of a Debacle” and wondered “How Should Americans Feel?,” brought two antithetical yet analogous movies: Robert Altman’s Nashville and Steven Spielberg’s Jaws. Each in its way brilliantly modified the cycle of “disaster” films that had appeared during Richard Nixon’s second term and were now, at the nadir of the nation’s self­-esteem, paralleled by the spectacular collapse of South Vietnam and the unprecedented Watergate drama.

In fact, in their time, Jaws and Nashville were regarded as Watergate films and, indeed, both were in production as the Watergate disaster played its final act in the summer of 1974. On May 2, three days after Richard Nixon had gone on TV to announce that he was turning over transcripts of forty-­two White House tapes subpoenaed by the House Judiciary Committee, the Jaws shoot opened on Martha’s Vineyard with a mainly male, no-­star cast. The star was the shark or, rather, the three mechanical sharks — one for each profile and another for stunt work — that, run by pneumatic engines and launched by a sixty-­five­-foot catapult, were created by Robert Mattey, the former Disney special effects expert who had designed the submarine and giant squid for the 1956 hit Twenty Thousand Leagues Under the Sea.

Brought to Martha’s Vineyard in pieces and cloaked in secrecy, Mattey’s sharks took longer than expected to become fully operational, and Jaws was further delayed by poor weather conditions. Accounts of the production routinely refer to the movie itself as a catastrophe only barely avoided: “All over the picture shows signs of going down, like the Titanic.”

In late June, a month when Jaws was still unable to shoot any water scenes, and while Nixon visited the Middle East and Soviet Union in a hapless attempt to, as the president wrote in his diary, “put the whole Watergate business into perspective,” Altman’s cast and crew arrived in the city of Nashville. They were all put up at the same motel, with everyone expected to stick around for the entire ten­-week shoot.

There is a sense in which Nashville represented a last bit of Sixties utopianism — the idea that a bunch of talented people might just hang out together in a colorful environment and, almost spontaneously, generate a movie. Even by Altman’s previous standards, Nashville seemed a free­form composition. It surely helped that neophyte producer Jerry Weintraub’s previous experience lay in managing tours, for Frank Sinatra and Elvis Presley among others, and packaging TV specials. Read more…

How Do You Move Past a Dad?

Illustration by Zoë van Dijk

Sara Fredman | Longreads | July 2019 | 9 minutes (2,492 words)

 

What makes an antihero show work? In this Longreads series, It’s Not Easy Being Mean, Sara Fredman explores the fine-tuning that goes into writing a bad guy we can root for, and asks whether the same rules apply to women.

Golden Age antihero plots were inextricably tied to marriage and the family. Women were often written as villains, antagonists to their husbands who were humanized by the way they loved and provided for their families, no matter the means. Parenthood in particular fulfilled another key requirement for the success of an antihero show: the perfect balance of power and powerlessness the antihero had to maintain in order to retain our sympathy. There is nothing quite like parenting children to make a person feel like a superhero one moment and dust in the wind the next.
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.

***

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

***

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

Editor: Cheri Lucas Rowlands

American Green

Andy Cross/The Denver Post via Getty Images

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

 

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

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

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Remembering Dr. John

Ronald C. Modra/Sports Imagery/Getty Images

The first Dr. John died in August 1885. He was known by many names, as New Orleans chronicler Lafcadio Hearn noted in his obituary.

“Jean Montanet, or Jean La Ficelle, or Jean Latanié, or Jean Racine, or Jean Grisgris, or Jean Macaque, or Jean Bayou, or ‘Voudoo John,’ or ‘Bayou John,’ or ‘Doctor John’ might well have been termed ‘The Last of the Voudoos,’” Hearn wrote for Harper’s Weekly that November, “not that the strange association with which he was affiliated has ceased to exist with his death, but that he was the last really important figure of a long line of wizards or witches whose African titles were recognized, and who exercised an influence over the colored population.”

The second Dr. John just died on June 6, 2019. In a way he, too, was a wizard — at least in the sense that anything done wonderfully well cannot be told from magic. This latter Dr. John was also associated with New Orleans and exercised his own influence as a singer, songwriter, and musician.

Born as Malcolm John Rebennack Jr., Dr. John was part of the third wave of influence — first jazz, then rock, and then funk — to emerge from the Crescent City, a place more responsible for American popular music than any other. His career took off while he was in exile, trying to preserve the music he grew up with. It ended with the world acknowledging his efforts to broaden our vocabulary, musically and otherwise.

“I been in the right trip,” he once sang — a line written for him by Bob Dylan, “but I must have used the wrong car.”

Born on November 20, 1941, “Mac” Rebennack grew up attending gigs and recording sessions with his music aficionado father, who turned him on to New Orleans jazz greats King Oliver and Louis Armstrong.

“Well, my father’s records were what they called ‘race records,’ which was blues, rhythm and blues, traditional jazz, and gospel,” Rebennack told Smithsonian Magazine in 2009. “He owned a record shop and had a large black clientele. They would come by and play a record to decide if they liked it. I got the idea as a little kid that I wanted to be a piano player, because I remember hearing [boogie-woogie pianist] Pete Johnson. I thought why not just be Pete Johnson?”

Fats Domino’s guitarists taught the young Rebennack some stuff. Meeting the great New Orleans pianist Professor Longhair inspired him to become a professional musician. Rebennack was present when Little Richard cut “Tutti Frutti” at Cosimo Matassa’s J&M Music Shop and Studio on North Rampart street. By the early 1960s, he was playing professionally, doing session work for such local luminaries as Art Neville and Allen Toussaint. Ace Records made him an A&R man at the age of 16.

By this time, Rebennack was also hooked on heroin and subsequently busted for possession. After his release from prison in 1965, he returned to a different world. It was already more difficult to play in mixed groups. “When the civil rights movement heated up, it became more dangerous to travel as part of these package shows,” he remembered. “Before then, we used to travel all over the South with no problem — me, Earl King, Guitar Slim, Chuck Berry, people like that — but then suddenly, we started getting hassled.”

Moreover, New Orleans was trying to clean up its seedy image, and many of its music venues, according to Rebennack, were “buckets of blood joints. It was not a wholesome atmosphere where you could bring your family along. There were gang fights. The security and the police would fire guns into the crowd. … Later [New Orleans District Attorney] Jim Garrison padlocked and shut down the whole music scene.” It was time to go.

Rebennack moved to Los Angeles, where he was soon playing sessions with Aretha Franklin, Bob Dylan, and Frank Zappa. “They recruited about half of New Orleans one time to go out and do The Sonny and Cher Show,” remembered Rebennack’s friend Coco Robicheaux. “They were all out there doin’ that, and Sonny was always after [Rebennack], ‘Man, I got a state-of-the-art studio, it’s there for you any time you want it. Y’all just lay around here, why don’tcha go do somethin’?”

Rebennack had an idea about a character someone could play, based on Jean Montanet. But he didn’t want to be Dr. John. He wanted his singer friend Ronnie Barron to do it. “I was never fond of front men,” Rebennack told the Smithsonian. “I didn’t want to be one.”

Barron was the reason Rebennack switched from guitar to piano. Years before, at a gig in Jacksonville, Florida, Barron was being pistol-whipped. “Ronnie was just a kid and his mother had told me, ‘You better look out for my son,’” Rebennack remembered. “Oh god, that was all I was thinking about. I tried to stop the guy, I had my hand over the barrel and he shot.”

“It just went right through my finger,” Rebennack said. “And my finger was hanging by a piece of skin. … They put it back on in the hospital and they sewed it back on very poorly and it never did work right.” When asked how he was able to play piano with a crooked finger, Rebennack quipped, “I try to avoid that finger when I play the piano.”

Barron was also responsible for creating a stage persona early on that inspired Rebennack.

“”I met Mac Rebennack when I was 15.” Barron once said.

I’d been aware of him since I was 12, and he had a good working band that played on the west side where I lived, in Algiers. New Orleans was a real fly-by-night town, where there was a big tourist crowd and people wanted to drink. They didn’t care about the music that much, just wanted to be entertained. So I created my “Reverend Ether” character, almost by accident. I made up this mythology about the voodoo and the gumbo. I’d shake the tambourine and say, “I’m gonna drop the truth on you!” I made up all this shit. This was before I worked with Mac, when I was working in a club on Bourbon Street. He’d come in and kind of watch what I was doing. … Mac realized the value in it, and after he hired me he wanted me to be the original Dr. John, because I already had a handle on the thing.

When Barron was hired by Sonny and Cher and moved west, he gave the Reverend Ether character to Rebennack.

Back in Los Angeles, Barron wasn’t interested in adopting Rebennack’s Dr. John persona. “Ronnie was like this good-lookin’ guy, liked to wear suits, he didn’t want to be no swamp thing,” Robicheaux said. “So they talked Mac into doin’ it. ‘You be Dr. John.’ And everybody loved it.”

Rebennack’s conga player told him, “Look, if Bob Dylan and Sonny and Cher can do it, you can do it.” And so Dr. John was returned to earth and put on a mission.

“I did my first record,” Rebennack said, “to keep New Orleans gris-gris alive.”

The first Dr. John was also a gris-gris man. According to Lafcadio Hearn, Jean Montanet claimed to be a prince’s son from Senegal, of the free-born Bambara tribe. As a youth, he was kidnapped by Spanish slavers. Given back his freedom, he traveled the world as a ship’s cook, finally settling in New Orleans. He became wealthy through fortune-telling and the folk magic practices that we now know as rootwork and hoodoo.

“By-and-by his reputation became so great that he was able to demand and obtain immense fees,” Hearn wrote. “People of both races and both sexes thronged to see him — many coming even from far-away creole towns in the parishes, and well-dressed women, closely veiled, often knocked at his door.” Before long, Montanet was worth $50,000 — enormous wealth for the mid-19th century.

The gris-gris originated in West Africa, and Montanet brought the practice with him. It takes the form of a fetish, carried by the user, for protection or benefit. They are often composed of an uneven number of bones, colored objects and stones, graveyard soil, salt, and other exotic ingredients such as bird nests. Gris-gris culture was already a part of Louisiana voodoo, brought to the state by enslaved West Africans, where it syncretized with elements of Catholicism. Hearn, a white man, described Montanet’s religion as “primitive in the extreme.”

If during his years of servitude in a Catholic colony he had imbibed some notions of Romish Christianity, it is certain at least that the Christian ideas were always subordinated to the African — just as the image of the Virgin Mary was used by him merely as an auxiliary fetich in his witchcraft, and was considered as possessing much less power than the “elephant’s toof.” He was in many respects a humbug; but he may have sincerely believed in the efficacy of certain superstitious rites of his own.

Rebennack had his own “notions of Romish Christianity”: He attended New Orleans’s Jesuit High School until kicked out for his musical preoccupations. Other forces connected him to Jean Montanet. “There was a guy the name of Dr. John, a hoodoo guy in New Orleans,” Rebennack once said. “He was competition to Marie Laveau. He was like her opposite. I actually got a clipping from the Times-Picayune newspaper about how my great-great-great-grandpa Wayne was busted with this guy for running a voodoo operation in a whorehouse in 1860. I decided I would produce the record with this as a concept.”

That record was 1968’s atmospheric, ominous, and thoroughly funky Gris-Gris. “One thing I always did was believe,” Rebennack told Mojo magazine. “I used to play for gigs for the Gris-Gris church. I dug the music, and that’s what I was trying to capture.”

“They call me Dr. John, known as the Night Tripper,” he sings on “Gris-Gris Gumbo Ya Ya,” in a raspy voice predictive of Tom Waits. (Rebennack once told a New Orleans paper, “I’m tripping through the shortcuts of existment to feel it and that’s good.”)

Got my satchel of gris gris in my hand

Day trippin’ up, back down the bayou

I’m the last of the best

They call me the gris gris man

“I always thought [voodoo] was a beautiful part of New Orleans culture,” Rebennack once said. “It’s such a blend of stuff; African, Choctaw, Christianity, Spanish.” He told the Smithsonian that he’d approached “some of the reverend mothers” and asked if he could perform the sacred songs. “But I couldn’t do them because it was not for a ceremony,” he said. “So I wrote something similar. One we used went ‘corn boule killy caw caw, walk on gilded splinters.’ It actually translates to ‘cornbread, coffee, and molasses’ in old Creole dialect.”

“It’s supposed to be ‘spendors’ but I turned it into ‘splinters,’” Rebennack remembered. “I just thought splinters sounded better and I always pictured splinters when I sung it.”

Coco Robicheaux had a more complex take. “Dr. John, he was very much interested in metaphysics. We had this little place on St. Philip Street. In voodoo they call the gilded splinters the points of a planet. Mystically they appear like little gilded splinters, like little gold, like fire that holds still. They’re different strengths at different times. I guess it ties in with astrology, and influence the energy. That’s what that’s about.”

Gris-Gris didn’t do that well commercially. “What is this record you gave me?” asked Rebennack’s label boss. “Why didn’t you give me a record that we could sell?” Still, the new Dr. John created a cult following by doubling down on the hoodoo visuals. He would appear onstage in a puff of smoke, decked in feathers (or merely body paint), robes, and headdresses. For a while, one of his opening acts was someone named Prince Kiyama, who would bite the heads off live chickens and drink the blood. Sometimes his backup dancers were nude.

It should go without saying that the new Dr. John’s act had as much to do with voodoo as David Seville’s 1958 hit “Witch Doctor” did to African shamanism, which is to say, not at all. When questioned about his Dr. John stage show later in life, Rebennack insisted that “it was very authentic,” and compared the abandonment of his dancers to “things that might happen in voodoo, where they’re taken by a spirit.” It seems more like the act was designed to appeal to his young, libertine audience rather than be an avenue of understanding a different, complex belief system. At any rate, he retired all that by 1976, when Rebennack appeared at The Band’s farewell concert (later immortalized in Martin Scorcese’s documentary The Last Waltz) to sing the charming, if not entirely wholesome, “Such a Night.“

America has always had two prominent cultures: the colonial and the communal. The colonial culture mimics or appropriates the voice of the underclass, manifesting itself in minstrelsy and coon songs, and even affecting civil rights–era folk music.

The communal strain of American cultural expression has been just as strong, but more fruitful. Think of Congo Square, the place in New Orleans where the first Dr. John and Marie Laveaux plied their trades. It was here that slaves were allowed to “gather, roughly by tribe, to play music, sing, and dance” in the 18th and 19th centuries. These rhythms, when combined with blues and European modalities and military marching band instruments, became jazz. Nothing like that had existed before. In the same sense, it’s how Louisiana voodoo was created out of a gumbo of multicultural spiritual and religious expressions to become something unique. Through the centuries, we have all gathered roughly by tribe. Sometimes it’s produced magic.

Mac “Dr. John” Rebennack embodied both of these cultures. His hoodoo schtick had a little of the “bone through your nose” stereotypes typified by artists like Screamin’ Jay Hawkins; it didn’t contribute much to cultural understanding beyond a new vocabulary of exotic words and phrases, which he had appropriated largely for effect.

But Rebennack was a musician — and more than that, a New Orleanian — through and through. He learned from black and white people, was shocked when a New Orleans auditorium wouldn’t let his white band back Bo Diddley, and dedicated himself to preserving that rolling, loose-limbed music he believed was dying. Later on, he often recorded with the Meters, the one band that epitomized New Orleans funk. Rebennack also revered his musical ancestors, recording tributes to Professor Longhair, Duke Ellington, and Louis Armstrong, New Orleans’s great ambassador of jazz. “I’m trying to give props to Pops,” Rebennack once said about his Armstrong dedication. “I think we’re all supposed to give props to our elders.”  

***

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

Editor: Aaron Gilbreath; Fact-checker: Jason Stavers

We Could Have Had Electric Cars from the Very Beginning

An advertisement depicts a Baker Electric automobile, the Baker Queen Victoria, driven by a young woman, 1909. (Stock Montage/Getty Images)

Dan Albert | An excerpt adapted from Are We There Yet? : The American Automobile Past, Present, and Driverless | W. W. Norton & Co. | June 2019 | 25 minutes (6,750 words)

Most people reasonably expect the story of the evolution of the automobile to begin with the invention of the automobile itself. I’ve disappointed enough people in my life already, so I give you the Jesuit Rat Car of 1672. In that year, missionary Ferdinand Verbiest created a steam wagon to bring the Emperor of China to Jesus, but the car was only big enough to carry a rat.

If you don’t like the Jesuit Rat Car as an automotive first, you might consider Nicolas-Joseph Cugnot’s cannon hauler of 1769. A product of the French army’s skunk works, it was canceled in beta testing. In 1790, Nathan Read got the first American patent for a steam-powered wagon, a remarkable feat because the US Patent Office itself had yet to be invented. Perhaps that counts. In London, Richard Trevithick set a Georgian coach body atop a steam boiler and eight-foot wheels, creating the first giraffe-less carriage. In 1805, American Oliver Evans drove his harbor dredge, the Orukter Amphibolos, down the streets of Philadelphia in hopes of enticing investors for a car business. Philadelphia cobblestone street paving gave horses purchase but shook the Orukter so violently that the wheels broke. Let’s call his the first amphibious car. Read more…

It’s Like That: The Makings of a Hip-Hop Writer

T-Neck Records, 4th & B'way, Jive, Profile Records, Ruffhouse Records

Michael A. Gonzales | Longreads | June 2019 | 45 minutes (7,644 words)

 

Recently a friend told me, “When I was a newbie at Vibe magazine, I always thought, Mike looks like what I always imagined a real writer looked like, with your trenchcoat and briefcase and papers … and your hats. I can’t forget the hats.” Though he did forget the Mikli glasses and wingtips, I had to confess my style was one I’d visualized years before when I was a Harlem boy hanging out in the Hamilton Grange Library on 145th Street, looking at Richard Wright, Chester Himes, and James Baldwin book jacket pictures.

Read more…