Search Results for: wedding

When Friendship Fades But the Images Linger

Photos by Cody Doherty & Barron Roth, Illustration by Homestead Studio

Eryn Loeb | Longreads | August 2019 | 14 minutes (3,579 words)

It started with pictures of Alice. She didn’t mind being put in awkward situations or uncomfortable positions for the sake of a photo. That made her a good friend. I put a tangled Rapunzel wig on her head, a plastic gun in her hands. I had her stand in the middle of the road, wearing a plaid bathrobe. Straddle a highway median in a tulle skirt and sneakers. Swan around the woods in a feather boa. She had a classically pretty face that could suggest everyone or no one. I blazed through rolls of black and white film, which I developed in my high school darkroom with clumsy chemistry and a pounding heart.

On the strength of those pictures, I was accepted to a summer photography workshop in Rockport, Maine. A small group of us — mostly but not entirely college students and recent grads — paid reduced tuition in exchange for doing odd jobs: hosing down vans, painting picnic tables, moving furniture. When we were lucky, we got to pay our dues in the darkroom, turning around contact sheets and prints for students who attended the pricey weeklong workshops, many of them taught by famous photographers like Mary Ellen Mark, Eugene Richards, and Joyce Tennyson. For those more typical students, relationships and revelations were fast-tracked. We watched their tentative arrival and swift blossoming, the compressed intensity between introductions and teary-eyed goodbyes. Our own seven week stretch wasn’t all that long, really, but measured in units of other people’s personal growth, it felt almost permanent.

It was summer and I was 19, living with a bunch of other young people who had stepped away from their fledgling lives to devote time to some version of art. Maine was dreamy, with quiet stretches of woods full of swimming holes and rope swings, lobster traps stacked in pleasing geometries. There was a glass-blowing studio in the ground floor of the house where we lived, and an old cemetery just down the road. I liked to walk around and take pictures of elaborately carved headstones memorializing wives and mothers, running my fingers over their names and honorifics. I was never without my camera. I spent hours in the darkroom but still found time to get sunburned.

When I wasn’t out shooting or cooped up printing, one of my favorite places was the library. It was a hot, lofted area in the small campus’ main building. A sign posted at the base of the stairs gave me solemn shivers. “Enter with respect for the knowledge that resides herein and with honor for those who are about to share with you their secrets and wisdom,” it read. “Maintain a serene presence.” I sat on the floor and pored over monographs: Francesca Woodman’s pictures of herself crouching in corners, hanging from window frames, a wild blur in an abandoned house. Nan Goldin’s pictures of herself and her friends all tangled up in each other, the color shots suffused with adulation and danger. Justine Kurland’s Girl Pictures, feral despite their polish. Judy Dater organized her images by gender; portfolios of men, of women.
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Losing My Religion at Christian Camp

Illustration by Homestead

Katy Hershberger | Longreads | August 2019 | 25 minutes (6,207 words)

“Will you pray with us?” It was my fifth day as a camp counselor; I was 17 and the three girls who asked me were probably 12. The five years between us was a teenage lifetime, though now as adults, we could be classmates, colleagues, barflies on adjacent stools. Then, we were children. I pushed myself up from the cool summer ground. “Um, yeah. Do you — ” my voice cracked, “ — want to be saved?”

It was July 2001 in rural Virginia, the last night of Christian summer camp. A hundred girls sat in a circle around the campfire, the smell of embers and bug spray permeating our clothes. We sang praise songs, lifting our hands toward the Virginia stars, toward God. The camp director led us in prayer. Then she implored the campers: If you want to accept Jesus Christ as your personal savior, ask a counselor to pray with you.

A week earlier, I had graduated from CILT, a three-year counselor prep program. The acronym stood for Camper in Leadership Training, though Caring Imaginative Loving Teachers was printed on our t-shirts. I collected songs and games in a “resource file,” I taught a daily drama class during the week-long camp sessions, and I stockpiled readings and Bible verses for daily devotionals. I did not learn how someone becomes a Christian.

I don’t remember what the girls wanted to ask God that night, but it was, blessedly, not to be saved. We huddled away from the crowd, holding hands, and I stood above them, just barely the tallest. I prayed, my voice husky with uncertainty, and stared at the grass, glancing at the girls’ faces to see if I was doing this right. I asked God to help and guide them, and I silently asked the same for myself.
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Here’s What Put Thousands of Californians in the Path of a Blaze

AP Photo/Noah Berger

If titles are the true first line of any story, then Mark Arax‘s new California Sunday piece starts with scorched earth: “Gone.” What first strikes as dramatic is a simple statement of fact. Four months after the Paradise fire extinguished, when Arax visited to start reporting what turned into an 11,000-word story, the communities that once filled the hills around Paradise, California were no longer there. California’s deadliest fire destroyed 19,000 structures, ended 85 lives, and left PG&E to pay $1 billion in damages. So many people lost the deeply personal, irreplaceable items that compose our identities and sense of family history, including one of Arax’s guides, a local named Joan Degischer:

Her mother had stored their history in the master bedroom closet and the garage rafters. Not a thing of it was left. Not the high school yearbooks or wedding albums or the knickknacks handed down the generations. Degischer had to call an old friend to recover a wallet-sized version of her high school graduation photo. As a kid, she had fears of such a fire, and her father would tell her not to worry. “ ‘We’re in the middle of town,’ he’d say.  ‘All these structures surround us. For a fire to get to Camellia Drive, it would have to be Armageddon.’ ”

With the reportorial skill and knack for narrative that Arax is known for, and the deep knowledge of a native, he looks beyond the tragic panorama of Paradise lost to identify the forces that put thousands of people at risk, and he finds a constellation of factors that other journalists have so far failed to connect: the history of fire suppression and forest mismanagement in the Sierra foothills; political corruption; governmental negligence and rampant urban growth; a flawed relationship with the land beneath our feet; and PG&E’s corrupt “culture of arrogance.” The clues to how this happened lay in past tragedy:

“When you connect the dots, you see a culture of arrogance in which the most important thing is the bottom line,” Frank Pitre, an attorney representing dozens of victims, told me. “Time and again, PG&E delays the necessary fixes, callously disregards the safety of California communities, and finds creative ways to not comply with the law. Billions of dollars that should have been invested in infrastructure instead went to pay an 8 per­cent return to its investors. That is their gold standard.” It was fiction that the California Public Utilities Commission exercised any watchdog role over PG&E, he said. “They don’t have the resources, they don’t have the trained personnel or mindset, to monitor and audit PG&E’s compliance with safety regulations. PG&E can literally get away with murder.”

If I wanted to fully understand the culture at PG&E, he told me, I needed to go back a decade to the tragedy that struck not the forests of California but a suburban neighborhood on a hillside overlooking the San Francisco Bay. “That’s where you’ll find the fingerprints,” he said. “That’s where you’ll find the DNA.”

On the evening of September 9, 2010, where Earl Avenue intersected with Glenview Drive in the community of San Bruno, a PG&E pipeline ferrying natural gas exploded. The blast knocked houses off foundations and instantly killed several residents. A giant fireball leaped out of the crater and began chasing other residents as they ran from their houses to a safe spot up the hill. The fireball split into two towering columns that hovered above them, roaring and vibrating. The broiler effect stole oxygen from their lungs and movement from their feet. They staggered up the hill and watched the rest of their houses go up in flames. Many did not realize until hours later that heat alone could singe their hair and cook their skin. Eight residents of the Crestmoor subdivision perished, dozens more suffered burns, and 38 houses were destroyed.

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In the Country of Women

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Susan Straight | In the Country of Women | Catapult | August 2019 | 38 minutes (7,573 words)

 

To my daughters:

They never tell us about the odysseys of women. They never say about a woman: “Her passage was worthy of Homer . . . her voyage a mythic quest for new lands.” Women don’t get the Heroine’s Journey.

Men are accorded the road and the sea and the asphalt. The monsters and battles and the murders. Men get The Iliad and The Odyssey. They get Joseph Campbell. They get The Thousand Faces of the Hero. They get “the epic novel,” “the great American story,” and Ken Burns documentaries.

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The Top 5 Longreads of the Week

The State Capitol building in Charleston, West Virginia. (Michael S. Williamson/The Washington Post via Getty Images)

This week, we’re sharing stories from Brent Cunningham, CJ Hauser, Carla Bruce-Eddings, Caroline Rothstein, and Lisa Grossman.

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Free Solo

Hulu, Photo Illustration by Homestead

Soraya Roberts | Longreads | July 2019 |  8 minutes (2,101 words)


The original cut of the
Veronica Mars pilot had a cold open set to “La Femme d’Argent,” the first track from AIR’s 1998 debut album, Moon Safari. A neon take on noir, the scene has the 17-year-old titular blond (Kristen Bell) alone in her car in the middle of the night outside Camelot, one of her local “cheap motels on the wrong side of town.” Her camera — along with a calculus textbook — sits on the passenger side and her lips are glossed as she watches through the rain-streaked window of her convertible. The silhouette of a couple can be seen having sex in one of the motel rooms.“I’m never getting married,” she says.

Instead of this kick-ass intro — which accompanies the DVD version at least — the series, whenever it airs on television, opens on a brightly lit trio of cheerleaders tearing through a school parking lot to the pop-rock strums of the Wayouts’ “What You Want” (Bite, 1993), also under Veronica’s voice-over: “This is my school. If you go here your parents are either millionaires or your parents work for millionaires.” It’s simple exposition, with none of the mood or the bite of the original, and it sets Veronica Mars up as a teen show with a babe at the center, not the contemporary noir revolving around a precocious P.I. that it actually was. Rob Thomas’s series, which first aired on UPN in 2004, takes a typical sun-kissed California girl, murders her best friend, turns her sheriff dad  — and eventually Veronica herself — into an outcast, has her mom abandon them both, and, as if that weren’t enough, has her raped at a class party (the network tried to get rid of that part), then the new sheriff laugh down her report. All of this happens in the pilot, by the way. The whole ordeal turns Veronica into a cynic and ultimately her dad’s sidekick at his newly launched private eye agency.

Every time Thomas sees the actual opening, it breaks his heart, he recently admitted to Vanity Fair. He was proud of his version, but Les Moonves, the chairman and CEO of CBS (owner of UPN), was not into a prologue in which the hottie appears as a hardboiled antihero. “It’s a high school show,” he said, according to Thomas. “It should start in a high school.” But it’s 15 years later and Moonves is out, having resigned in disgrace amidst a series of sexual misconduct allegations, and there’s a new season of Veronica Mars, this time on Hulu, at the top of which Veronica is back outside a seedy motel, alone. The image of the lone woman is as strong as it ever was. And perhaps it is even more poignant these days as a symbol of transgression in the wake of our collective awareness around men’s control of the world. In this moment, the singular femme represents the possibility of a future without the trappings of the past. She’s less marshmallow than s’more. Read more…

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.

***

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

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