Search Results for: health

‘Horror Is a Soothing Genre … It’s Upfront About How Scary It Is To Be a Woman.’

Head of Medusa by Gian Lorenzo Bernini (Photo by Araldo de Luca/Corbis via Getty Images)

Laura Barcella | Longreads | August 2019 | 14 minutes (3,597 words)

 

In her acclaimed 2016 debut, Trainwreck: The Women We Love to Hate, Mock, and Fear … and Why, feminist author and cultural critic Sady Doyle dissected the ubiquitous American pastime of simultaneously idolizing and vilifying female celebrity. Her new book, Dead Blondes and Bad Mothers: Monstrosity, Patriarchy, and the Fear of Female Power, also looks at how the morass of misogyny poisons everything — including our psyches, our popular culture and our everyday lives. But this book focuses more intently on … horror.

Not the horror genre — though plenty of those examples are included — but about the horror of living as a woman in a violent patriarchal society that fears you, despises you; even wants you dead. Pulling from a broad range of cultural references, from Freud to Aristotle to the second-wave feminist theories of Dorothy Dinnerstein to obscure slasher films like The Mutilator, Doyle examines the myriad ways that the world is monstrous to women — and how the world has made monsters of us. “Women have always been monsters, too, in the minds of great men; in philosophy, medicine, and psychology, the inherest freakishness of women has always been a baseline assumption,” Doyle writes in the introduction. “A monster does not merely inspire anger, or disgust. A monster, by definition, inspires fear.”

The fantastically smart book that follows is broken into sections covering the monstrousness associated with the entire socially-prescribed female life cycle, from the spark of adolescence; to marriage and motherhood (with their attendant domestic indignities); to the solitude of old age. Read more…

Toni Morrison, 1931-2019

Pulitzer Prize-winning author Toni Morrison photographed in New York City in 1979. (Photo by Jack Mitchell/Getty Images)

To lose Toni Morrison is to lose a great earthly guide. It feels personal, familial, yet I am aware that it is not. She had her own, very full life, with two sons, Harold Ford Morrison and Slade Morrison (who died in 2010), as well as grandchildren and other extended family. Still, I was born into her world. When she died last Monday night after a short illness at 88, Toni Morrison, born Chloe Wofford in Lorain, Ohio, had published eleven novels, nine volumes of non-fiction, five children’s books (in collaboration with Slade), two plays, a libretto, and more over four-and-a-half decades. After her third novel, Song of Solomon, Morrison left her job at Random House, where, as senior editor, she shepherded work by Lucille Clifton, Toni Cade Bambara, and Angela Davis. She “single-handedly produced a black literary canon,” poet Harmony Holiday wrote as part of a longer reflection. A good amount of this work, including Clifton’s memoir Generations and The Black Book, from 1974, is out of print. The essayist Michael Gonzales told me The Black Book was “a breathtaking tome of black life from the Motherland to the Otherland, sheet music and slave notices, pictures of baptisms and black bodies burning as hordes of white men laughed.” In her foreword to the 35th anniversary edition, Morrison called it a “requirement for our national health.”

My earliest years overlap with the publication of Tar Baby, Beloved, and Jazz. Morrison won the Pulitzer in 1988 and became a Nobel Laureate in 1993, when I was not yet a teenager. In their tributes, many writers have spoken of a maternal transmission — how they came to Toni Morrison through their mothers, aunts, older sisters. I remember early edition hardcovers with bold plain fonts, laid out in different spots around my first home, protected in slick plastic, tucked under my mother’s arm or in the space between the driver’s and passenger’s seats for a return trip to the library. Morrison was grown-woman business and I burned to be let in on it. I’ll never know the force of what made my mother — born in 1943 to a woman born in Mississippi in 1906 — truly reach for those books and hold on to them the way she did. I’m lucky to have come of age with Toni Morrison fully formed, her books on the typewritten reading lists teachers pass around at the start of the school year, on Oprah’s show, in the glossies. We do not deify the pursuit of learning — we’d pay teachers and journalists more in money and respect if we did. When a person who reads for pleasure and reads for work, who takes the lessons of what they read to heart, who allows the lessons to wash over them is held up as an American celebrity, it is its own kind of coup. This coup made a different country possible. By being born and coming of age in the last years of the 20th century, I received the gift of the challenge Morrison waged on behalf of literacy, learning, and language, and, to some degree, won. 

 

* * *

I finally read my first Toni Morrison novel, Song of Solomon, at 16. Before then I breezed through every book I read for school or fun with a haughty ease, memorizing names and dates and the facts of plots in order to recite them back for tests. I do not know that anything before made me stretch and reach for my intelligence. The village in which the protagonist, Milkman, comes of age, the circle of women who surround him, the language they speak to each other, all had the texture of home. But Morrison’s experimentation with narrative and her conception of time — the gaps and dynamism that make a reader slow down  — were too much for tenth grade me to breezily absorb. It got better the second time; I could understand enough to talk about it. “That, my dear, is called reading,” Morrison said to Oprah when Winfrey phoned about adapting Beloved for the screen. I hadn’t known before then that if something did not come easy, I could struggle with it until it changed me. That it would be meaningful; I could be made myself by the struggle. Not an egoistic pursuit of struggle, not a flirtation with martyrdom or self-deprecation. But a grown-woman struggle made of will and a desire to extend myself. Reading is re-reading, trying means trying again.

There would be other lessons. Sula sees possibility in a matriarchal upbringing and pushes me to recommit to my own women friends. “My sister? I need her,” Morrison told the writer Rachel Kaadzi Ghansah during their time together. I am thinking of black women like my mother who rushed the bookstores and signings when Toni Morrison began publishing her own work in 1970, before she’d won any of the awards that signaled her significance to white America. I am thinking of the black women she shared the New York Times bestsellers’ list with, like Alice Walker and Terry McMillian, who, together, created a renaissance of black women’s fiction. I am thinking of the poet Sonia Sanchez, one of the early instructors to teach Morrison’s work in the university. I am thinking of the 48 signatories of the January 1988 open letter to the New York Times, published shortly after the publication of Beloved and fresh off the loss of James Baldwin, whose defiance helped write Toni Morrison’s work into posterity. I am thinking of the black women she wrote alongside (“Some of us thrived; some of us died,” she writes in a foreword to Sula), with whom she dreamed:

I was living in Queens while I wrote Sula, commuting to Manhattan to an office job, leaving my children to childminders and the public school in the fall and winter, to my parents in the summer, and was so strapped for money that the condition moved from debilitating stress to hilarity. Every rent payment was an event; every shopping trip a triumph of caution over the restless caution of a staple. The best news was that this was the condition of every other single / separated female parent I knew. The things we traded! Time, food, money, clothes, laughter, memory—and daring. Daring especially, because in the late sixties, with so many dead, detained, or silenced, there could be no turning back simply because there was no “back” back there. Cut adrift, so to speak, we found it possible to think up things, try things, explore. Use what was known and tried and investigate what was not. Write a play, form a theater company, design clothes, write fiction unencumbered by other people’s expectations. Nobody was minding us, so we minded ourselves. 

Morrison’s passing is an enormous loss. She was a singular writer and editor with a complex body of work, a rigorous, unwieldy mind who wrote and thought us toward a more capacious humanity. She defies any impulse toward summary. She taught us what reading is, and will be teaching it into all the futures we actually have. May we also remember the witnesses who saw her early on. 

For more on Toni Morrison, selected profiles, interviews, and tributes: 

For more of Toni Morrison, a short story and selected essays: 

 

Whiteness on the Couch

Paint texture by Punkbarby / Getty, Illustration by Homestead Studio

Natasha Stovall | Longreads | August 2019 | 28 minutes (7,061 words)

 

“Father, Mother, and Me/

Sister and Auntie Say/

All the people like us are We/

And everyone else is They.”

Rudyard Kipling

“England’s not the mythical land of Madame George and roses/

It’s the home of police who kill black boys on mopeds.”

—Sinéad O’Connor

 

The couch in my therapy office is occupied mostly by white people. Anxious white people and depressed white people. Obsessive white people and compulsive white people. White people who hurt people and white people who hurt themselves. White people who eat too much, drink too much, work too much, shop too much. White people who are bored, envious, guilty, numb. Racist white people and antiracist white people. White people who look across the room and see a white therapist listening. We talk about everything. Except being white.

***

An old saw about therapy is that the thing you don’t talk about is the thing. The therapist and patient together avoid this thing, this shameful and threatening thing. The thing is unconscious — sometimes partially, other times totally. You only know it by the silence and illogic that surrounds it, and the extremes to which the patient will go to erase any sign of it in their own mind, and in their therapist’s, too. The first step towards unpacking the thing is finding a way to talk about it. Just talk about it, moving step by careful step into a psychic place so raw that even acknowledging this unconscious thing is a threat to safety and sanity. Freud called this process “making the unconscious conscious” and it has defined psychotherapy ever since.

What if whiteness is the thing?
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Finding My Father

Illustration by Homestead

Natassja Schiel | Longreads | July 2019 | 41 minutes (7,527 words)

I’ve admired Natassja Schiel since we met at a writer’s workshop on the Oregon Coast nearly three years ago. Her crisp sentences move with warmth and certainty, and her gentle courage with difficult topics pulls a reader in. 

Schiel’s essay “Finding My Father,” is a layered coming of age story about a woman who turns to sex work and creative writing after a difficult upbringing. Opossum, a small literary journal based in Oregon, originally published the piece in November, 2017. According to Schiel, the editorial process was pleasant enough, until the lead editor, John Blanton Edgar, sent her numerous unwanted emails, texts, and calls outside the bounds of their working relationship. She began to hear similar stories from other women writers who’d interacted with him, so Schiel asked for her piece to be removed from Opossum’s site. Edgar complied, then reversed his decision before sending emails claiming responsibility for her career’s success. When Natassja took her story public in May 2019, she heard a resounding chorus of support. Edgar took down the piece the following month. 

Longreads reached out to Edgar. He told us he believed their interactions post-publication were borne of a growing friendship. “I was under the impression that we were friends and that the publisher/writer relationship was in the past. We exchanged many texts and had a small number of phone conversations during the next year or so.” He also expressed regret that Natassja’s experience had been so challenging. “I am sincerely sorry that Natassja feels this way and that I ever made her or anyone else feel uncomfortable.” According to this statement, Edgar shut down publication of Opossum in June. 

Longreads is thrilled to re-publish “Finding My Father.” It is Schiel’s second piece with us—Danielle A. Jackson

* * *

I’d often lean into an older balding man, when I worked as a stripper, grazing his shoulder before bracing myself on the plush leather chair that he lounged in. I’d stand between his legs, undulating my body, my torso inches away, but never touching him, my right breast lingering over his nose. When he exhaled, the tickle of his breath would stiffen my semi-erect nipple even more. “You’re so sexy,” he’d whisper over the loud music, redirecting his gaze to my face. I’d look him in the eyes and think, You’re old enough to be my father. Are you?

I didn’t know my father. I’d never met him. He could have been anyone.

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Towards Chinatown

Illustration by Olivia Waller

Melissa Hung | Longreads | August 2019 | 13 minutes (3,316 words)

Two days after I learn that my mother has cancer, after my sister tearfully tells me over the phone, “This might be mom’s last Christmas,” I go to San Francisco Chinatown.

I didn’t grow up in a Chinatown. It is not my home. Yet when I think of my mother in Texas, I feel pulled towards Chinatown’s tightly packed stores and no-frills restaurants.

So, leaving an appointment on a December afternoon, I board a bus heading east. The bus is an electric one, powered by cables strung above that guide it down a one-way street through a quiet residential neighborhood. Tidy three-story buildings line the route, their bay windows jutting out. When the bus crests over a hill, I catch a glimpse of San Francisco Bay between skyscrapers in the distance, a little over a mile away. The water shimmers like a mirage even though it is real.

Then, we rumble downhill and we’re in Chinatown. The bay windows are gone. Instead, laundry hangs out to dry on fire escapes and from clotheslines threaded across open windows. Children walk down streets holding the hands of their mothers. Older women dressed in purple and pink puffy jackets, sun hats, and sensible shoes tow hand trucks with bags strapped onto them. Elderly men in gray jackets and baseball caps wait at bus stops. Everyone seems to be carrying something: a backpack, a tote bag or two, a purse worn cross-body, a pink plastic bag in the crook of an elbow.

I step off the bus and walk to the Chinatown YMCA for a swim. Most of the pools I frequent are harshly chlorinated. Open your mouth while submerged in them, or worse, accidentally swallow the water, and you realize immediately your mistake. But here the pool is saltwater, soothing on the skin. As I swim freestyle down the middle lane, joy rises through my body like a buoy. This surprises me — that after two days of feeling terrified about losing my mother, I am capable of joy. I swim for 35 minutes, then listen in on the chatter of aunties in the locker room as I change. Technically, I am eavesdropping, but I don’t think of it that way. They are talking loudly enough for everyone to hear, the way my Po Po used to talk.

In Chinatown, I manage in my clumsy Cantonese. I speak the language and I don’t. My pronunciation is decent, but my vocabulary is stunted. Some words come easily. Others I grasp for. They exist just beyond my reach the way the details of a dream tease the waking mind.

With my hair still damp, I walk around the corner to a bakery with a yellow awning to buy a cha siu bao. I favor the baked ones with a glazed crisp exterior over the fluffy white steamed ones.

“Yāt go cha siu bao,” I say to the woman in an apron behind the counter. One pork bun.

“Baked,” I add.

I know the word for baked in Cantonese. Guhk. I’ll remember it later, but in the moment of the transaction, I can’t retrieve it quickly enough.
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Pot Luck

Juan Camilo Bernal / Getty, Illustration by Homestead

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

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

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Meet Goop’s Number-One Enemy

Longreads Pick

“Whether it’s dubious wellness product claims, misconceptions about basic anatomy or confusion over reproductive rights, Dr. Jen Gunter will set you straight. How this ob-gyn from Winnipeg became the most important truth teller in women’s health.”

Source: Chatelaine
Published: Jul 19, 2019
Length: 11 minutes (2,960 words)

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

LAPI / Getty, Illustration by Homestead

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

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

“I’m OK,” I say, not really knowing.

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

***

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

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

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

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

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

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

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

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

Jacob is in rehearsal all the next day. I am left alone with nothing to do. So I go to Auschwitz.
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On, In, or Near the Sea: A Book List

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Alison Fields | Longreads | July 2019 | 7 minutes (1,753 words)

My peak beach read moment came in 1999. I sat third in a line of chaise lounges — my grandmother Nana, my Mom, me, my younger sister — beside the pool at the Lowcountry beach resort we’d visited every summer since time immemorial. All four of us were sun drunk. Three of us were at least tipsy from cabana cocktails. Nana, Mom, and my sister glistened with Hawaiian Tropic — a trio of golden-tanned nereids in black swimsuits and designer sunglasses. I was lobster pink, slathered in 50+, and cowering under long-sleeved shirts and towels like I was going out for a part in a zero budget Lawrence of Arabia because genetics are cruel.

Nana wasn’t much of a reader. Her preferred tomes were pricing guides for antique Japanese porcelain and the Horchow catalog. That year, however, she’d packed a paperback copy of The Starr Report amidst her Breton tees and linen shorts. Nana was a vocal critic of the Clinton administration, a fact that surprised no one as her personal politics ran slightly to the right of Divine Right Monarchy. I supposed she thought the book would bolster her already outspoken arguments. All of us knew better than to ask. We had a gentleman’s agreement with regard to politics on family vacations, the central conceits of which were: 1. Don’t bring it up and 2. When Nana does — and she will — change the subject as quickly as possible.

In that moment by the pool, I was lost in a dream of Conquest-era Mexico, wading through a particularly muddy chapter of Terra Nostra, and I could tell Nana was on the verge of saying a thing. My sister had put on headphones and securely hid her face in her college summer reading. Mom, reading an epistolary novel about Empress Josephine, was sitting next to Nana, so she was the most easily available when Nana finally sighed dramatically and tapped her Virginia Slim impatiently against the resort-branded ashtray.

She said Mom’s name about three times. Mom might have been engrossed in her book, but Nana was persistent. When she knew she had Mom’s attention, she shoved The Starr Report toward Mom and tapped a manicured fingernail against the page.

“Honey, would you mind telling me what this is?”

There was a long pause. I listened to the splashing of swimmers in the pool, the ice clinking at the bar, the wheels on a catering tray bound for some beachside fête. I wondered Are they playing the Cardigans at the tiki bar? Mom’s pause stretched, long enough for me to realize with dawning horror that whatever text had stymied my then seventy-three-year-old grandmother was probably not a legal term.

“Anybody want another round?” I stood up and asked.

Nana waved me off, looking expectantly at my mother. Mom gave me a pleading look and told me to add the drinks to her tab.

As I walked down the boardwalk toward the bar, I could hear Mom in the same halting, careful words I remember her using when she explained certain things to me, “Well, Mother, when a man and a woman love each other very, very much . . .” I made a mental note to order Mom a double.

***

Two things I like: 1. Sitting on, in, or near enough to the sea that I can sense it, and 2. Reading books.

My inner pirate captain is a bit of a librarian. And my inner librarian is only ever a breath away from raising the sails and lighting out for ports unknown. She knows that nothing improves the reading of a novel like a salty breeze and sand on the toes, even if said salt and sand are sticky murder on a paperback. I suppose there are people that go to the beach without a book. Those people are perverse. What do they do instead, exactly? How much bocce can a human play?

This time of year friends ask me for beach books because I read more than is probably healthy. Sometimes people even want to know, specifically, what I will be reading at the beach. That’s a gamble, because it’s basically just my TO READ stack and there be monsters. Case in point: I spent the vast majority of a week at the beach some years back with Britain in Revolution, Austin Woolrych’s history of the English Civil War (the book was excellent).

I think I do okay with recommendations. The better I know you, the closer I’ll get to the mark. But critical to the whole endeavor is what you mean by Beach Book. Some people define the genre as a slightly better class of an airport bookstore read — something breezy, either plot-heavy, funny, or both, not too serious, not too academic. Some people see the Beach Book as literal — a book set on or near a beach. Sometimes these two categories overlap and that’s awesome, but you have to be very, very careful or you’ll summon Nicholas Sparks, the literary equivalent of the dude who brings a Filet -O-Fish to a Lowcountry Boil.

For today, I’m going with the second category. Books about beaches, seas, sand, and coastal destinations to accompany the end of the summer season and the first stirrings of the fall.

Let’s start close to home. Many of us end up at the beach on family vacations, always awkward, which Colson Whitehead’s sly, autobiographical Sag Harbor pretty much nails. While vacationing, questions of love and class can arise, especially if there’s marriage on the horizon as is the case in Dorothy West’s The Wedding. In Jill McCorkle’s Ferris Beach, friendships (and friendships with a romantic possibility) blossom around the various impediments of small-town prejudice and adolescence.

Oceanside theme parks and roadside attractions give tourists the chance to mingle with full time carnival-types, like Karen Russell’s Bigtree dynasty at their alligator wrestling park in Swamplandia, or at the eponymous, possibly haunted North Carolina theme park in Stephen King’s slim, enjoyable Joyland. Hotels can also occupy the seaside, and JG Farrell’s extraordinary Troubles offers a darkly humorous critique of colonialism and its obliviousness in face of revolution within a sprawling, cat-infested resort on the Irish coast. If you prefer your seaside hotel on the fancier end, and for your mysterious IRA man to have ‘80s hair, there’s Jonathan Lee’s haunting High Dive.

Moving to a more tropical locale does not guarantee a more peaceful plotline. Proximity to both spectacular island sunsets and titans of Reggae do not prevent against the violence and conspiracy at the heart of Marlon James gorgeous, epic A Brief History of Seven Killings. The ghosts of Trujillo’s Dominican Republic haunt the landscape in Julia Alvarez’s fictionalized recounting of the Maribal sister in her In the Time of the Butterflies. And the generations of Indonesian women inhabiting the lush, fictional port city of Eka Kuniawan’s Beauty Is a Wound survive decades of war and political upheaval amid a landscape buffeted by trade winds and a bit of magical realism.

Islands have always been ripe for troublemakers and hijinks — actual pirate captains, not just imaginary ones ideated in suburbia. Richard Hughes’ deft, surprising (based on a true story!) High Wind in Jamaica, with its pint-sized pirate ship mutineers is just about the best thing ever. Anyone who finished Lord of the Flies back in the day will not be surprised to see kids going very dark in tropical environments. Ugly things can even happen in suburban, post climate-crisis, dystopian Florida in Donald Antrim’s Elect Mr. Robinson for a Better World. Things get a little weird in Florida, as in Lauren Groff’s marvelous short story collection, Florida, and really, really weird in Jeff VanDerMeer’s Southern Reach Trilogy.

We’ve always known the sea is home to monsters. Sometimes the literary ones have their own perspective on events, such as in Madeline Miller’s wonderful, magical Circe. Some of those who spend their lives conjuring monsters from the deep have their own particularly monstrous ideas. Certainly that was the case with HP Lovecraft, and Paul La Farge’s The Night Ocean is a great novel that tries to make sense of that. On the other hand, sometimes monsters end up being something quite unexpected, as in Sarah Perry’s gorgeous The Essex Serpent, a historical novel about science, faith, and love. Rarely do monsters end up being as wholly and completely hilarious as they do in Mat Johnson’s richly-imagined Pym, which takes on both Edgar Allen Poe and Little Debbie Cakes in its satirical journey through the (very) cold heart of American racial politics, past and present.

Of course, it’s never the destination when it comes to sea voyages, as much as the journey. I like journeys that say something about both the people making them and the world they are traveling through. Amitav Ghosh’s Sea of Poppies assembles a fascinating, multinational cast of characters to sail upon ships carrying indentured servants between India, and continues them through the next two books of his Ibis trilogy. Charles R. Johnson’s Middle Passage recounts the horrors of the slave ship from the unlikely perspective of a newly freed slave who boards for its last journey. The title character of Esi Edugyan’s masterful Washington Black begins his journey in Caribbean slavery and then travels a path through several continents and scientific discoveries.

Seaside journeys also offer people an opportunity to meditate — sometimes philosophically — on their various troubles, as is the case in Rachel Cusk’s Faye Trilogy or John Banville’s grieving narrator in The Sea. Dealing with romantic disappointment might provoke an escape to the seaside, even if it happens that your ex is already there, as is the case in Iris Murdoch’s The Sea, The Sea. It’s also possible you might be forced to leave your seaside home, and there’s usually a price to that. Just ask the Little Mermaid or Antoinette in Jean Rhys’ dreamy Jane Eyre “prequel,” Wide Sargasso Sea.

Finally, if you’re the sort of person that demands a dense history to while away your days, might I recommend David Abulafia’s The Great Sea, a survey of the Mediterranean from antiquity to present. It’s well-written, informative, and offers a wider lens view of one of the world’s most fascinating places than, say, your fourth reread of Patricia Highsmith’s The Talented Mr Ripley or that copy of Jess Walter’s Beautiful Ruins your friend from book club loaned you. Though, indeed, both of those are peak beach reads.

Don’t forget your sunscreen, and happy reading.

* * *

Alison Fields is a writer in Carrboro, North Carolina.

Editor: Katie Kosma

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.

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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