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Images Present Themselves: A Conversation With Photographer Burk Uzzle

The famous Woodstock photo by Burk Uzzle.

This month is the 50th anniversary of Woodstock. Originally billed as the “Woodstock Music & Art Fair presents An Aquarian Exposition ­— 3 Days of Peace & Music,” the gathering changed American culture in unanticipated ways. Photographer Burk Uzzle became an unwitting documentarian of the event, and captured an image so representative that it became the cover of the Woodstock soundtrack album. Uzzle’s career spans six decades. He documented the tumultuous 1960s and continues to be a powerful example of how an artist can function as an agent of change. I spoke with him earlier this year in his studio in Wilson, North Carolina.

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Tom Maxwell: Can you describe your experience taking that iconic picture and your experience being a photographer at Woodstock?

Burk Uzzle: I had gotten up early one morning and left the little lean-to that I’d made for my wife and two children, and just went out to walk around. As the light came up, people started to wake up and roll out of whatever they were sleeping in or on or whatever mud puddle they were trying to transcend, and I just walked around.

This couple was standing up, wrapped in a blanket, holding each other and trying to stay warm. I think maybe they were one of the very few couples standing. Most people were still asleep. It was just so beautiful, the way they were holding themselves up and wrapped in a blanket. It all composed very nicely with the hillside in the background and the foreground objects on the left and the side. It lent itself to a very beautiful composition.

‘We’ll just go and make a nice little day trip out of it, going into the music festival.’

As I walked up to them, I did the sort of body compose technique which street photographers do. I would sashay to the left or sashay to the right so that when I got to within the right amount of distance to make a nice composition with them standing there, filling the frame as much as it needed to be filled, they were perfectly placed. Then I quickly raised my my Leica loaded with black and white and took a few frames, and then I took my normal lens off of that camera and took a few more frames on the Leica loaded with color film. I did not have a lot of color film, because I’d gone up there to camp out with my wife and sons, and we got locked in. The rain came and the crowds came. Once we were there, we couldn’t get out.

TM: Were you on assignment?

BU: No, I had turned down all assignments. I don’t like to work on assignments — at least when it’s something that I think is important. It’s fun to do commercial assignments where somebody needs me to go be an eloquent spokesman for an oil company or whatever, but when something is happening like Woodstock or Martin Luther King’s funeral, or the pictures I do these days driving around the United States or in my studio, I don’t want any direction from any kind of editor whatsoever.

TM: You just sensed that Woodstock was a big deal.

BU: Right. I had heard about it and about the bands that were going to be there. It sounded like good music. I was living in New York, so we all decided to get out of the city for a weekend. I think it was the director of Magnum Photos in New York, to which I belonged at the time, she and her husband owned a lot of acreage up in the Catskills near Woodstock. We decided to camp on a trout stream very near to Woodstock. We pitched our tent and were having a great time on the side of the stream for a couple of days.

Then the morning the festival started, we decided, “Well, let’s drive over to Woodstock and go hear a few tunes. Then we’ll come back tonight and get back in our tent. We’ll just go and make a nice little day trip out of it, going into the music festival.” Once in, we couldn’t get out.

TM: You said something very interesting to me, that most of the other guys were taking pictures of the bands, of the musicians.

BU: Well, they were all working on assignment. Their editors had told them to be sure to get pictures of this musician or that musician. Like I say, I don’t like to work on assignment, so I had been offered assignments but declined. I was free to respond to what actually happened.

TM: Not to get too inside baseball, but as a freelancer you also own the negatives of whatever it is that you shoot.

BU: That’s correct. I do that anyway. I would never give up copyright to anything. Even all the years I was at Life magazine, the reason I did not accept a staff position at Life magazine when offered a job was because I wanted to own the copyrights. I said, “I’d like to work for you, but I’d rather just have a contract, be a freelancer, and I’ll own the copyright to all my negatives.” That was one of the very few smart business decisions I ever made in my life.

TM: How old were you when you entered into that agreement with Life?

BU: Life hired me when I was 23. I was the youngest photographer they had ever hired. That was a good way to start learning how to be a good professional or educated. They sent me all over the world. I had never wanted to go to college. I, to this day, break into a cold sweat if I go into a classroom of any sort. I have spent time in prisons and I have spent time in colleges, and I don’t like either one of them. They both make me feel the same way.

I have spent time in prisons and I have spent time in colleges, and I don’t like either one of them.

TM: To pull back a little bit, the year before you attended Woodstock, you were taking pictures of Martin Luther King in his coffin. What a roller coaster that must have been.

BU: It was a roller coaster. Martin Luther King had become a hero of mine because he was my very first magazine assignment when I was about, oh, I don’t know, 19 years old.

I had quit my job. The only salaried job I ever had in my life was in Raleigh, North Carolina, as a staff photographer for the News & Observer, where I was paid, I think, $48 or $50 a week. My wife was seven months’ pregnant, so I had to find something to do. I was hired on as an assistant to a very good magazine photographer in Atlanta. He was out of town one week, and Jet magazine called up and said, “We need your boss to go and photograph Martin Luther King tonight.” I said, “Well, he’s out of town.” They said, “Well, can you take pictures?” I said, “Yeah, I’m his assistant. I was a newspaper photographer until I moved here.” They said, “Well, would you run over and photograph Martin Luther King sitting on his couch in his home? He’s a young unknown. Nobody has heard much about him, but he seems like a promising young preacher and he has a father who is a great preacher.”

I took the assignment, visited his church in Atlanta, and went to his home and did the picture. Jet magazine published it, and they continued to hire me to do more assignments. I continued to follow him. That was the beginning of the decade of social protests in the United States. It was a very interesting decade. I got beaten up. You get banged around a lot when you’re trying to photograph the kinds of demonstrations that were going on all through the ’60s, but I did. That was my first year of social protest.

TM: Did you feel that being a documentarian was, in fact, a political act?

BU: I felt that, as I do now ever more strongly, artists are probably the only people who can make a real difference with the nature of the political corruption in the country now. It’s up to the artist to do their best to photograph, to document, but do it interpretively so you bring our own sense of truth and dignity to the pictures you’re taking. You do that and you get them published as often as you can and as well as you can. That’s what I endeavor to do.


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TM: Can you give me an example of one of your photographs that embodies what you just described?

BU: Life magazine gave me an assignment to spend time on death row in Chicago’s Cook county jail, because there was a man named Paul Crump, who the warden had described as sort of a hero of the jail. He had been sentenced to death, but he was doing a lot of wonderful things in the jail, attempting to mentor people and making them better people. In fact, there was a fellow in there that was having an epileptic seizure. My friend, Paul Crump, saved his life. He knew exactly what to do for him.

That story was published in Life magazine. It had so much response. People were writing all kinds of letters on Crump’s behalf to the governor, that the governor actually commuted his sentence to life imprisonment instead of death.

TM: As the decade progressed, the 1960s became more violent and divisive. There’s an extraordinary image, one that when I visit you and look at it, it shocks me in its beauty and in the way it describes the scene, which is of King in his coffin and a woman touching his face in a very loving and open and innocent gesture. I wonder if you could describe that moment.

BU: This was in Memphis, and his body was going to be shipped to Atlanta to be buried. We decided that we would hang out there and wait to hear what was going to happen. They announced they were going to open up the funeral home where his body was being kept, for just a short time. They let myself and about three or four other photographers in, and just a very few people, apparently close friends, to view his body in the open casket.

Indeed, one would see the expected kind of thing, where people would see his body and throw their hands up in horror. and cry and carry on and grieve in very visible, loud ways. We all took those pictures. Then, all of a sudden, this one woman came by, and she just reached over and caressed his face in the most loving, beautiful way, and then moved on. That picture was on the same role of film as one of the pictures of one of the very loudly demonstrating women, which became the cover of Newsweek. It was such a beautiful and tender photograph.

It’s up to the artist to do their best to photograph, to document, but do it interpretively so you bring our own sense of truth and dignity to the pictures you’re taking.

A friend of mine, who lived in Chapel Hill, was here in my studio one day, looking at all the Newsweek outtakes. He saw that picture. He said, “This is such a tender photograph. Why don’t you send it off and get it scanned and get a print made of it?” which I did.

TM: Had you ever made a print of it?

BU: I had never printed it.

TM: It was just on the roll.

BU: It was just on the roll. Newsweek had taken a look at the film and they saw what they wanted and gave me the film back. Magnum sold those pictures around the world a few times. I had never printed it, and by then, that transparency was here in Wilson. The Ektachrome film in those days was not very stable, and the picture had faded terribly, but I sent it off to the man who did a lot of my scanning, Todd Gangler at the Art & Soul Lab in Seattle. He managed to salvage the picture and make a decent file out of it, which could be printed. He made a print of it, and we hung it here in the studio.

One day a tour came through the studio. One of the people in the tour saw that picture on the wall and said, “Oh, do you know who that is?” I said, “No, I have no idea. She was just a women who was being very tender with Martin Luther King.” He said, “That’s because she was one of his mistresses.” He told me her name, which I regretfully forgot to jot down. He told me their story and that Martin Luther King had a big, long history of having lots of mistresses—and indeed, that’s how J. Edgar Hoover kind of kept him in line, by threatening to tell his secrets. He never did, and Martin Luther King kept on keeping on. That picture was here and so it was interesting to know the story about it.

TM: Moving forward then to Woodstock, and you’re there because it feels like some place you should be, and you probably had a limited amount of film. You probably got a lot of good pictures, but that couple in the sleeping bag on that hill, you said the composition offered itself up to you. You could recognize how to compose the frame pretty quickly. Did you think it was anything other than a good snap when you took it?

BU: I felt, at the moment I took it, that it was a really lovely picture. I understood right away that it was a very beautiful composition. It was one of the tenderest things I had seen. It was very dark. It was a slow exposure, hand-held camera. The color film, in those days, was not very fast, before the days of digital. But yeah, even then, I felt that it sort of summarized the feeling of the place. I had been running around photographing all the people getting undressed up by the pond and so forth, and the people who had wandered away from the stage to take their clothes off and go skinny dipping in one of the little lakes up there. There was a sense of beauty and peace about the men and women who were in the nude, wandering around and having a great time. The event seemed very likely to turn itself into a people story rather than a music story. They summarized that. They were the essence of it.

TM: That’s key, really, isn’t it — because the publications who put photographers on assignment to take pictures of the well known musical groups , that was sort of a one-way communication. You concerned yourself with some of the half-million people that made up the population of that temporary community, which was the real story.

BU: Right. The people became the real story. Well, back to the story of the film: We were only expecting to stay there a few hours, for the day at most, having a couple of kids that were first-graders, basically. I stuck a pocketful of black and white film in my pocket, and we carried a little knapsack with some canned fruit and animal crackers and a poncho. You never go anywhere with kids without a poncho. That was our story, so I quickly ran out of that film.

I realized I had to shoot very selectively, and I would do one or two frames at a time rather than the characteristic three and a half rolls anytime you would see anything. I said, “Hmm. This is pretty interesting.” I kept going down to the stage. I knew a lot of the photographers, and I would borrow color film. I would tell them, “You know, the most wonderful things are happening up on the hills. People are all taking their clothes off!”

The event seemed very likely to turn itself into a people story rather than a music story.

There was one Magnum photographer who was a really good friend of mine, Charles Harbutt. I said, “Charlie, you’ve got to get up there and take some of these pictures! There is great stuff to see.” He said, “No, the editor wants me to be sure to get Jimi Hendrix and Ravi Shankar. I’ve got to get Ravi Shankar. The editor would be furious with me if I left the stage and took those photographs, just photographed people when I need to be photographing musicians.” I said, “Well, in that case, would you loan me some film?”

There were two or three occasions when I would go down and borrow a few more rolls of film from him. That picture, the cover picture, was taken on film I borrowed from Charlie Harbutt.

TM: Momentos, like souvenirs or photographs, often tend to stand in for memories and they can replace a memory. because it recalls this thing for you. “Remembering a past event is a present experience,” as Alan Watts tells us. Is your relationship to past pictures now different than it was at the time that you took them, or can you describe any where that might be the case?

BU: Yes. My relationship with American society — the nature of our culture all through that decade — it was pretty rocky. It had been a bad, hard decade. In fact, two weeks after Martin Luther King’s funeral, I photographed Robert Kennedy’s funeral. I remember marching down the streets in Cicero, New York with the people of color, and people were throwing bricks off of rooftops, trying to hit us on the head. This is not a nice thing to do. It doesn’t make you feel really good about your country.

John Kennedy had been killed, Robert Kennedy had been killed. I saw it in Ethel and Robert’s faces at Martin Luther King’s funeral. I could see that they knew that he was going to be killed. How could he not be killed, and he was! Two weeks later, I photographed his funeral. Woodstock happened, and Woodstock is when American culture turned on a dime. You could see it all around. You could see the way people treated each other. You could see people that were expected to riot, and people were expected to hurt each other, because they were described as wild-assed hippies or whatever they were. They were being really nice to each other. They were taking care of each other. It was raining. It was muddy. There was not a lot of food. But people were really trying to help each other through this event. I think that picture summed up that feeling. It became a profound moment of spiritual peace, sociologically speaking.

I think that picture summed up that feeling. It became a profound moment of spiritual peace, sociologically speaking.

I’m not a religious person at all, but if there had ever been anything that happened in my life that would have made me believe in a higher power, it probably would have been Woodstock and seeing the way the couple in that photo held each other, and how everybody else treated each other. They were really a symbol. They were representative of a whole lot else that was going one. They were just the most visually eloquent example of it.

TM: Your work continues and your relationship to your subjects continues. Where are you at now as a photographer? What is it that you want to document?

BU: I have pictures hanging on my studio wall of an AR-15 I borrowed from a friend. Actually, I wrapped it up in what may even be the same little space blanket I had with me at Woodstock. There it is now holding an AR-15. Standing behind it are a dozen or so grammar school kids — black, white, multi-racial and what have you. I asked them to hold hands as if they were about to be shot. It’s a picture which I call “Targets.” It’s a terrifying and sad, horrible picture to have to look at.

Then there is another one where we already took a picture of a door that says “colored” on it. That was found a block and a half from where I live in the basement of a building that was about to be remodeled.

TM: That was meant for a bathroom or some segregated facility? It still has the word “colored.”

BU: Yes, it has “colored” on it. This is an easy thing to find in the South. Growing up, I would see these doors all the time. I borrowed the door, brought it to my studio, hung a noose over it, hired some black dancers to come and take their clothes off and stand on a little pedestal as if to visually paraphrase what used to happen when they’d get off the slave boats in Charleston or New Orleans to be auctioned off to slave owners. They were told to undress. There they are. It’s a very beautiful but troubling photograph because there they are. I had a friend make a noose to hang over their heads and I call that picture “Heritage,” because that’s the black heritage.

I have to do it. That’s why I am on this earth.

TM: Obviously, you put two black people into what is not a comfortable situation. Maybe as dancers, they’re used to being disrobed, but here they are with all of this horrible iconography that still casts a very long shadow over our society. What did they say to you?

BU: Well, I told them the same thing that I told the school kids that came here. I said, “I want to tell the story of violence. I want to tell the story. I want to do a photograph which speaks to the issues of violence in our culture today. I’m asking you to cooperate with me.” They happily agreed, “Absolutely, let us participate in telling the story. We’re honored and happy to do it. Let’s all work together to make this a powerful photograph.”

TM: What have you seen through your lens that gives you hope, because you still travel all over and shoot outside of your studio?

BU: I see in the landscape, I see the joy of the eccentricity of the Southern culture, which gives me great pleasure. Now the South is a very special place. It’s hateful and racist on the one hand, and it’s loving and poetic and eccentric on the other. Those two poles bounce off of each other almost within every block you see in a small town in Southern America.

I love to drive the backroads, the small towns. I find examples of both and then I photograph them and put them in my archive. I put them on my website and show them to museums. Sometimes I’m lucky enough for museums to buy these pictures and put them in their collections, although I was told a really interesting thing by a very good museum curator who lives and works in the South. “You will never sell any of these pictures that deal with racism to a museum in the South. They don’t want to touch it. They don’t want to be known for racism, so you may never, ever have a picture in the permanent collection in a Southern museum that deals with this.” I was recently on a trip across country, and in Austin, Texas, I went to see a museum and they said, “No, that’s not true. We could very well see ourselves buying these photographs for our permanent collection.” They looked favorably upon the box of photographs that I showed them. They said, “We want to keep all of this in mind.” I think there are some Southern museums that would buy them for their collection. So far, that’s been the most optimistic thing I have heard.

TM: You, of course, are undeterred in pursuing the things that you believe need to be documented.

BU: I have to do it. That’s why I am on this earth. I’m on this earth to photograph what I see around me, that which I love and that which hates me and that which loves me me back and that which I really dislike seeing. I trace a lot of it these days right back to Donald Trump. How can I not?

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

Editor: Aaron Gilbreath

The Young Man and the Sea Sponge

Original sketches by Stephen Hillenburg

Darryn King | Longreads | August 2018 | 13 minutes (3,214 words)

In January 2012, Eric Bettanin, an Australian Army officer, took his brother-in-law’s Jet Ski out for a spin off the coast of Victoria. About 10 minutes in, the engine failed. As night fell, he drifted away from the beach and out of sight of family and friends. He spent the night bobbing around in the Southern Ocean, battered by large waves and howling winds.

Fortunately, Bettanin was wearing a pair of bright yellow SpongeBob SquarePants board shorts. He had picked them up for five Australian dollars, thinking they would get some laughs over the Christmas holidays with the family. As temperatures dropped, he took the shorts off and wrapped them around his head.

The next morning, one of the search boats fruitlessly trying to locate Bettanin was on its way back to shore. They had all but given hope when they spotted it — a telltale speck of SpongeBob yellow on the ocean.

That’s what the internet said anyway. If the headlines that week were slightly overblown, they were in keeping with the upbeat and outlandish spirit of the Nickelodeon cartoon. “SpongeBob SquarePants saved my life.” “SpongeBob Saves.” “SpongeBob SavePants.” Read more…

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?
Read more…

The Occupation of a Woman Writer

Bettmann, George C. Beresford / Getty, Photo Illustration by Homestead Studio

Kiley Bense | Longreads | August 2019 | 12 minutes (3,056 words)

 

I woke up to the sound of someone speaking. It was late on Saturday at a large writing conference, nearing midnight. A man was performing a stilted Ginsbergian ode to the empty hallway outside my hotel room, his voice so loud that my eardrums were rattling with couplets. Headphones and pillows couldn’t block the noise out. I shifted and frowned. He must not realize I can hear him, I thought. I shrugged off the sheets and called the front desk.

The receptionist assured me that security would come upstairs soon. A pause in the man’s rambling followed, and the silence held for a few minutes. Then it was broken; again he began to boom. I cracked open the door so that I could just glimpse a sliver of him at the end of the hall, a sheaf of papers clutched in his hands. I sighed, guessing that he had seen the security guard and cut off his reading before he could be identified as the culprit. I called again and again. It took four times before the security guard finally caught him bellowing and asked him to stop. By then, it was four o’clock in the morning.

I heard the elevators contract. A beat. And then: “Fuck you!” he screamed. “Fuck you! You’ve never heard great poetry before! You fucker!”

Alone in the suddenly quiet room, I marveled at the arrogance of this man, surely another writer at the same conference I was attending. How much ego was necessary to power that level of misplaced rage? How would I feel if I realized that I had forced a floor of strangers to listen to my cluttered first drafts? I knew: embarrassment, guilt, distress. His reaction was so foreign to me that I had trouble comprehending it. And yet there was some part of me that had suspected he might not go gently into the night. That inkling had stopped me from confronting him myself. Men can be combustible creatures. Better to wait outside the impact radius, if you can.

Read more…

Nashville contra Jaws, 1975

Paramount Pictures, Universal Pictures, Illustration by Homestead

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

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

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

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

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

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

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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On Silence (or, Speak Again)

Illustration by Homestead

Elissa Bassist | Longreads | August 2019 | 26 minutes (6,529 words)

He knew I’d write this. He said so years ago. He was a well-known author and editor — at least in certain major cities — and I was an unpaid volunteer for his literary magazine.

I remember we were at a mutual friend’s book party when he told me what I’d do: that I would, one day, “take him down.” Six thoughts banged into my mind: 1. He thinks the worst of me. 2. So he admits he’s done something to me and to others worthy of a public takedown. 3. He knows I am so desperately hurt that I would expose him. 4. How much dirt does he think I have? 5. This is why I shouldn’t go to parties. 6. I won’t be the one to take him down; he’ll take himself down, eventually.

I’ll show you!” began the imaginary one-sided conversation I had with him later that night when I was alone in my apartment. “I’ll never say one word! To anyone! About anything!”

It was an effective silencing technique.
Read more…

Shapes of Native Nonfiction: ‘The Basket Isn’t a Metaphor, It’s an Example’

Education Images/Universal Images Group via Getty Images

Colin Dickey | Longreads | August 2019 | 21 minutes (5,681 words)

 

The question of “craft” is central to the new anthology Shapes of Native Nonfiction: Collected Essays by Contemporary Writers, edited by Elissa Washuta and Theresa Warburton. It’s there in the title itself, with its emphasis on shapes and shaping, but beyond that, throughout the anthology there is a recurrent interest in the question of craft and crafting, both in the sense of the writers’ craft and in the relationship between writing and other kinds of crafts.

In early June I reached out to Washuta and Warburton about doing an interview with them about the book. In the conversation that follows, we talked about the form and style of the twenty-seven essays that make up the book, as well as how European and non-Native attitudes towards literature and craft can hamstring an understanding of Native storytelling and writing.

Among other things, we discussed the idea of the basket as a figure for the essay — the book is organized around four sections, each of which takes its name from a term related to basket weaving: “technique” (for craft essays), “coiling” (for essays that “appear seamless”), “plaiting” (for “fragmented essays with a single source”), and, finally, “twining” (for essays that “bring together material from different sources”).

But in Shapes of Native Nonfiction, the basket is not only a metaphor; as Warburton notes below, is also often intimately related to storytelling and genealogy. Throughout our conversation, we returned again and again to a distinction between metaphor and literal meaning. It’s a distinction that in non-Native writing informs a long-standing and durable binary, but is for many of the writers here, a binary that’s not only unproductive but actively reductive.

This is only one of the various binaries that these essays break down or reconfigure. The twenty-two writers featured in Shapes of Native Nonfiction present a wide range of approaches, each one both sui generis and part of a long, interwoven tradition. In what follows, Washuta and Warburton discuss how the book came to be, how they arranged it, and how the various pieces in the anthology connect with one another. Read more…

The Wind Sometimes Feels in Error

Sectional view of the Earth, showing central fire and volcanoes, 1665. From Mundus Subterraneous by Athanasius Kircher. (Photo by Oxford Science Archive/Print Collector/Getty Images)

Luke O’Neil | an excerpt from Welcome to Hell World: Dispatches from the American Dystopia | OR Books | forthcoming | 17 minutes (4,698 words)

 

Just outside the gates of the Hofburg Palace the massive baroque seat of power for the Habsburg kings and emperors of the Holy Roman Empire and in the shadow of the 13th century cathedral the Michaelerskirche with its elaborate series of subterranean crypts there’s an open air museum in the center of the popular Michaelerplatz. Amidst the tourist bustle and high-end retail shopping and cafes with blankets strewn over chair backs and the omnipresent wall-mounted cigarette vending machines the excavation looks like a narrow scar carved into the earth that opens a window into Vindobona which is a Roman military outpost that is believed to be where Marcus Aurelius died in the year 180.

Aurelius’s Meditations were something like the first self-help book albeit one that set the course for Christianity and Western civilization. In short it was a set of guidelines for being a good man written by himself to himself. Everything happens for a reason he’d say. “The universe is change; our life is what our thoughts make it.” Sorry but since I’ve been rewatching True Detective season one it’s almost impossible not to hear shit like that in Matthew McConaughey’s voice. Read more…

Shared Breath

Illustration by Homestead

Caitlin Dwyer | Longreads | July 2019 | 20 minutes (5,624 words)

 
It was late afternoon in Virginia, humid but not too hot. The Hampton River rippled with a light breeze, lifting skirts and blowing ties. Guests sipped their beer and swayed a little — the way one does when watching a slow dance, unconsciously mimicking the movement of other bodies — as Chris Nalley led his mom on the floor. His bride stood nearby, red-gold curls framing her face, watching her new husband with a smile. Chris looked poised, in control of the dance, as a man looks when a long-awaited moment arrives and he steps confidently into its shape. A moment later his mom stepped away, and he gestured toward another woman standing nearby, a blonde in her 40s.

“Who’s that?” I asked my husband, who grew up with the bride.

“It’s his donor mom,” he whispered back.

Vicky West stepped into Nalley’s arms and laid her ear to his chest. Inside she could hear Nalley’s breath. The warm Virginia air moved through two lungs donated by a boy named Hans, who died of a brain aneurysm at age 20. West’s son’s lungs.

“I was like, ‘Oh my gosh, what if I have a breakdown in the middle of the dance floor?’” West recalls. She had brought her sister and her best friend to the reception to help her prepare for the emotional moment. “I’m never going to dance at my son’s wedding, and he’s my only child. They gave me something that I never thought that I would get.”

West and Nalley didn’t know each other when Hans died. For years after his organs arrived at the University of Virginia, on ice, to be inserted into Nalley’s body, they didn’t even know each others’ names. But over time, they’ve developed a relationship that is both tentative and incredibly tender. They consider each other family, but each of them worries about putting pressure on the other person to have a relationship. West thinks of Nalley as her own child in many ways, but she knows he has a life, a marriage, his own separate identity. Nalley struggles with survivor’s guilt, knowing that Hans died and he is here. He refers to the lungs as not his own, as if they were foreign objects inserted into his body, which medically, in some ways, they are. Both Nalley and West are passionate about organ, tissue, and eye donation and the gift of connection and continuation it provides — even as it accompanies, inevitably, great grief.

* * *

“The science behind how I have these lungs, and they’re not mine, and they’re hooked up like you change a pipe under the sink — you know, switch the plumbing out — is just amazing,” says Nalley. As the recipient of two separate lung transplants, most recently from West’s son, Nalley has a healthy awe for modern medicine.

Complex medical procedures can seem to the layperson almost magical. We can snip out someone’s heart, put it into someone else’s body, and it starts beating. We can graft tissue and replace corneas. We can sustain heartbeats and blood pressure using complex machines, which loop the blood out of the body, oxygenate it, and feed it back in. These procedures come with great risk, but at least they are possible. For most of human history, the things that killed us just killed us. Now, with the help of machines, doctors, and humans who give pieces of their bodies to complete strangers in death, we can live longer, healthier lives. As modern people, we exist not only as ourselves any longer, but as the interconnections between various humans and technologies.

This is true for most people who have faced a medical crisis and relied on a network of humans and machines to save them. In such a crisis, the boundaries of identity become more permeable and the sense of self expands. Organ donation brings this node of connections, this strange, nebulous feeling of trust and gratitude, into sharp focus because of the physicality of the connection: Those who have received a donation literally carry the DNA of the other person inside them. Sometimes recipients also become invested in relationships that nurture, honor, and remember the donor, and they find a relationship with the donor’s family and identity. Communicating can help all sides make sense of a complex, emotionally challenging situation. In some cases, the recipient never learns about the donor and comes to accept these new body parts as their own, creating a new sense of wholeness as they heal.

It wasn’t that long ago that the idea of cutting someone’s lungs out and surgically implanting them in someone else’s body would have been absurd. Just 175 years ago, doctors used ether anesthesia for the first time. The first successful kidney transplant was only 65 years ago. It wasn’t until the 1980s that the first successful lung transplants took place. In 1986, the date of the first successful double-lung transplant, Chris Nalley was 6 years old.

* * *

I was 17 years old when my parents announced that we were going on a 10-day silent Buddhist meditation retreat. Despite initial doubts, I ended up enjoying it: long quiet walks around the UC San Diego campus, tasty vegetarian meals, morning meditations rung in by a bell. I especially remember our teacher. At the time, I thought of him as a brown-robed, slow-talking old man. After almost two decades of meditation practice, I now know him as Thich Nhat Hanh, a renowned Zen teacher and peace activist.

Toward the end of the retreat, he sat onstage in front of a line of candles. Cupping one hand to protect the flame, he lit a candle, then blew out the match. He used the first candle to light a second. He used the second candle to light a third. And so on. Then he gestured to the last candle and asked us whether the flame in this final candle was the same flame that had lit the match.

As modern people, we exist not only as ourselves any longer, but as the interconnections between various humans and technologies.

I didn’t understand that demonstration until many years later, when I became a mom. At one day old, my son was hooked up to a ventilator, unable to breathe on his own, heavily sedated with morphine. The doctors said he had holes in his lungs, and they suspected brain damage as a result of oxygen deprivation during labor. As a newborn, my son was not eligible for a transplant. We could only watch and wait to see if his lungs healed.

Standing over his crib, my hand on his softly moving chest, I understood how the self could transfer into another body and also be separate. This tiny creature had been inside me less than a day ago, and now struggled to breathe on his own. He still felt like a part of my body that had been recently extracted on an operating table. I had a thick, puffy scar across my abdomen where they’d pulled him out, and I could see the dimpled chin he’d inherited from me, the same chin I had inherited from my father, beneath all the plastic tubing.

“We think of our body as our self or belonging to our self. We think of our body as me or mine. But if you look deeply, you see that your body is also the body of your ancestors, of your parents, of your children, and of their children. So it is not a ‘me’; it is not a ‘mine,’” writes Thich Nhat Hanh in Lion’s Roar, a Buddhist magazine. “Your body is full of everything else — limitless non-body elements — except one thing: a separate existence.”

Buddhists call this lack of separateness “no-self.” It’s not a denial of our existence, but the acknowledgment that we exist only in relationship, in community, in continuation. In my family’s experience with the health care system, I saw how fragile our bodies are, how quickly they can come to rely on others for survival. When my son got sick, I stopped seeing myself as an isolated individual, a person who makes individual choices and suffers individual consequences. Instead, I saw the ways in which bodies are made up of both personal characteristics and the myriad influences of their environment, carrying with them the DNA, the traumas, the bacteria, the gifts and generosities of other people. We carry our parents, but also our doctors, nurses, teachers, organ donors: All these people flicker in us, tiny, guttering lights shielded from the wind by cupped hands.

* * *

The last thing Nalley remembered, it was January. He’d been arguing with the doctor. He needed an antibiotic for pneumonia, but as a manager for a busy shoe store, he had used up his limited days off and had to get back to work. He remembered getting angry at being detained. He remembered yelling a little.

Now as he looked out the hospital window, unable to move, heart racing, he saw leaves on the trees. It was May.

Nalley panicked. He had been asleep for five months. His heart rate and blood pressure shot up, and the staff surrounded him, trying to calm him down. They gave him something and he slipped back into sleep.

They woke him a few times, until, gradually, he understood what had happened. Admitted to the hospital in January 2005 with pneumonia, Nalley had become angry when the doctor told him he would be there at least a week. “I just wanted to go home and go back to work the next day,” he says. Eventually, he had fallen unconscious from lack of oxygen. He was intubated, given a tracheotomy, and placed in a medically induced coma for months while his lungs fought off the infection.

Nalley had been in the hospital a lot. He was born with cystic fibrosis, a chronic, progressive disease that gradually impairs lung function. The disease typically worsens in late adolescence and early adulthood, just as a person’s identity begins to crystallize. Infections like pneumonia become more common, leading to long-term antibiotic use and complications. While treatments are available, there is no cure.

When he had learned to walk and eat again after months of muscle atrophy, Nalley went home, still dependent on supplemental oxygen. Anytime he went outside, he carried portable oxygen tanks with him. “So much oxygen would flow out of the tank that it would burn your nose,” Nalley recalls.

Running errands became a negotiation of time versus liters. He could carry smaller oxygen tanks, each of which lasted about four hours, so he had to think ahead: If he got caught in traffic and ran out of air, he could get sick from oxygen deprivation. “I felt like an astronaut,” he says.

Being in his early 20s, all he wanted was to go to bars, hang out with friends, and flirt with girls. Instead, for a year and a half, his day-to-day life became a dull routine of television, computers, and forced social interaction. As his lung function declined further, doctors offered Nalley an opportunity: He could get on the list for a lung transplant.

* * *

When a potential organ or tissue donor dies, several teams kick into immediate action. For a case like Nalley’s, there are two surgeries: the donor and the recipient. First, the donor’s lungs are removed, a process that involves stapling shut the major vein and artery that take blood to and from the lungs, as well as closing off the bronchus, the main passage through which air passes. The organs are cut out, treated with blood thinners and preservation solutions, checked to make sure they don’t have too much fluid or any signs of infection, and kept cool.

“You want to be ready to sew the lung very close to the time it arrives,” explains Frederick Tibayan, a surgeon who heads the advanced heart failure and transplant program at Oregon Health and Science University. That’s because “when the lung or lungs have been removed from the donor’s body, it’s no longer being perfused with blood that is giving it nutrients and keeping that organ alive.” So while the lungs make their way to the recipient, possibly from another hospital or city or even state, in haste, another team of surgeons preps the recipient.

It’s a “highly coordinated dance,” says Sarah Kilbourne, an assistant professor of medicine at the University of Virginia who works on Nalley’s care team. A nationwide computer program matches organs by blood type to the highest-priority recipient waiting for a donation. This happened in 2006, and again in 2013, when Kilbourne got a telephone call saying there was a lung available for Nalley. Both times, Nalley got to the hospital as fast as possible. In preparation for a potential procedure, he’d been trying to gain weight, doing physical therapy several times a day on his failing lungs, and keeping himself as healthy as possible for major surgery.

“I was gung-ho, let’s get this thing over with,” Nalley remembers of the first surgery. “In pre-op my parents were crying and I was, like, so ready to have this transplant. I was at the bottom of the barrel of life. Anything would have been better. Half a lung, one lung, a whole lung. Anything.”

Complex medical procedures can seem to the layperson almost magical. We can snip out someone’s heart, put it into someone else’s body, and it starts beating.

Nalley was having a bilateral transplant, which meant both lungs would be taken out. In this situation, the surgeons either do a clamshell incision, which involves slicing up the sides of the body and across the breastbone, or they simply divide the breastbone and open up the torso. They take out the worse-functioning lung first, again by stapling shut the bronchus and blood vessels and removing the organ, then sewing in the donated organ. “This is obviously stressful for the patient because they’re working on one lung. The heart is having to pump all the blood through one lung and having to work harder,” explains Tibayan. In around 25 percent of cases, the patient has to go on cardiopulmonary bypass, a machine that helps the heart handle the stress. Once the second lung is sewn in, the goal is to get the patient up and moving as fast as possible, to strengthen the heart and get the lungs working on their own.

“I tell people that after the first transplant, that first breath I took was the longest, deepest breath I’d ever taken in my life, and it wasn’t even … it was someone else’s lungs that were doing all the work,” says Nalley. He knew that a stranger’s body had been joined with his, letting him take these deep breaths. Generally, donors’ names and identities are kept anonymous. Nevertheless, the sense of breathing as or with someone else hits home for Nalley. “It messes with your mind, similar to thinking about how small we are in the universe. That the universe is so vast and then you think, there’s this part of me that’s not me … but I’m alive because of it.”

* * *

When Tibayan mentioned to me using a form of cardiopulmonary bypass called extracorporeal membrane oxygenation, or ECMO, in transplant surgery, I remembered what it looked like. The ruby blood in thick tubes. The sound of the nurses banging their fists against the machine to prevent clots. The way the patient is sometimes drugged up to prevent him from moving, so that the canula feeding directly into his carotid will not jostle and detach.

My son was on ECMO for 10 days. He was kept alive effectively as a cyborg, his vitals inextricably linked to the machine that kept him breathing — and to the nurses who monitored the blood as it circulated out of his body, and the doctors who checked for air leaking into his chest cavity. I remember the strange attachment to the machines that were keeping him alive, a simultaneous revulsion and tenderness for the care he received. Beside the high-tech instruments in the room, a small electric candle flickered in the window, near the cot where I or my husband slept each night. I had never imagined that parenthood would begin mostly as a vigil.

“Impermanence means being transformed at every moment. This is reality. And since there is nothing unchanging, how can there be a permanent self, a separate self?” writes Thich Nhat Hanh. “So what permanent thing is there which we can call a self?”

The son I have today exists as the confluence of machines and humans. Ten years earlier, the ECMO technologies and caregiver training wouldn’t have been in place to save him. In 2017, they were. He may not be attached to those devices any longer, but they resonate in him with every breath he takes. Most people who have gone through a major medical event understand that we emerge back into health connected to our caregivers and to the expansive web of lifesaving practices that make up modern medicine. My son is not a machine, but he is alive because of them.


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* * *

“I thought of my donor as a guardian angel type of figure,” says Katy Portell.

When she was 4 years old, Portell received donated tissue to repair a faulty valve in her heart. She grew up aware of her heart condition, but not very engaged with her donor. He was a mysterious figure, rather abstract. As she grew up and became more involved in organ donation advocacy, she realized a hard moment was coming: “I knew that I would have to be ready to face the reality that there was a person on the other side whose life was cut short, who was meant for something more.”

Portell, who is the organ donation ambassador coordinator for NHS Blood and Transplant in the United Kingdom, took a series of extraordinary steps to discover her donor’s identity, more than 20 years after the tissue transplant. First, she had to find her organ procurement organization (OPO), a group that acts as a bridge between the recipient and donor hospitals. Because it had been so long, she had to get in touch with the surgeon who had done her transplant many years before. Once she found the OPO, she wrote a letter, using guidelines from a transplant coordinator; the letter was scrubbed of identifying information and sent to the OPO, who reached out to the donor family: Would they be willing to receive correspondence?

When she received a letter, she couldn’t wait to open it. Photos of a young boy spilled out of the envelope. “That was the moment when everything became very, very real, because suddenly there was a real person who had died,” says Portell. “That was devastating.”

Her donor was P.J., an 8-year-old who had been hit by a car while riding his bike. “He loved Indiana Jones, was obsessed with secret codes, and wanted to be a jet pilot or archaeologist when he grew up,” says Portell. He also made an extraordinary choice; he had told his mother he wanted to be a donor in several conversations during his life. Portell’s sense of guilt and gratitude was crushing.

She corresponded with P.J.’s family for about six months before she felt ready to meet. “I had a fear that was, frankly: Will they like me?” It’s a strange pressure, to carry a piece of someone’s son’s heart in your body. She had to carry P.J., too. She had to channel his spirit, and to live in a way that felt worthy of his choice to donate.

She thinks of him now like a big brother. When Portell applied for her current job, she emerged from an interview and felt confident about her chances. She walked the streets of London imagining P.J. walking beside her — not as a child, but as a man. She imagined high-fiving him. “I was strutting down the sidewalk and saying, ‘We did it,’” she says. “Nothing I do is without him.”

Portell met P.J.’s parents on New Year’s Eve 2016. Their first meeting was captured on video. It’s impossible to watch without crying: Portell running into the arms of P.J.’s mother, burying her head in her neck. They sit together, laughing, weeping, sharing photos. “You have fulfilled my child’s dreams,” P.J.’s mother says to Portell. “How could we be anything but proud?”

* * *

Not everyone meets their donor family. Although it is becoming more common, largely thanks to social media, Portell says, it’s a mistake to assume everyone is willing or ready to make that connection.

Tom Martin does not know his donor. He received a heart in 2013, after many years of heart failure eventually left him hospitalized. Disqualified at first from receiving a transplant because his doctors suspected he had precancerous cells, he fought to stay on the transplant list. He wanted to see his youngest son grow up. Martin had family and friends write letters to the hospital’s transplant program, proving that he had a network who would support him in recovery. When a heart became available, he was rushed to Oregon Health and Science University; he posted on Facebook before the surgery: They found me a heart! Then he went under. He doesn’t know whose heart he received, and he doesn’t want to know.

“I was freaked out. I felt weird about waiting for somebody to die,” he says, now six years out from his transplant. He chokes up as he continues: “I knew it wouldn’t be nice. It would be a young person in an accident, or a suicide. That was the only part I hated.”

It’s hard to get an estimate of how many recipients end up meeting their families. Because each OPO operates independently (there are 58 in the United States), nationwide statistics are tough to track down. Current estimates hover around 50 percent, a much higher number than in previous decades. For tissue recipients like Portell, meetings are even rarer, as the donor’s tissue is often donated to multiple people. Meeting the family “should be an option,” says Portell, but she cautions against expecting a close connection.

* * *

Nalley resisted meeting his donor family for a long time. After his first transplant, he started running races, first an 8K and then half-marathons, testing out his new lungs’ capacities. He joined recreational sports leagues in Richmond, where he met his future wife, Martina. The freedom of being able to move where and when he wished was exhilarating. Finally, he could be a normal young man: “I’m going to spend an all-nighter at a girl’s house. Or go out with friends in Richmond and not have to worry about being home at a certain time,” he says. “Literally the tether was gone.”

A few years after his first transplant, in 2011, Nalley was competing at the Transplant Games of America, an Olympics-style series of events. A donor mom was helping to organize one of the events, and she pushed him to connect with his donor family — but the thought of communicating seemed like an imposition. “If I contact them and they’ve already put closure to this tragedy, am I just going to be pulling a Band-Aid off?” he wondered. “I didn’t want to disrupt someone’s life.”

Eventually he did write, and he met Terri, whose son Ryan had been in an accident at age 16 and donated his lungs, kidney, and heart. Nalley and Terri became close. They went for brunch and dinner regularly, and ran a 10K together. “We just kind of connected,” says Nalley. “The first time we met, I gave her this great big hug and she put her head to my chest and listened to me breathe.”

In 2013, just two years after they connected, Terri died. But Nalley missed her funeral. He was back in the hospital, getting another double lung transplant.

* * *

A transplanted organ or tissue never quite gets used to its new home in the recipient’s body. Although the organ or tissue can function well for many years, recipients have to take immunosuppressant drugs to keep their bodies from rebelling against the donation. Organs can be rejected by the immune system immediately, which is called acute rejection; the more insidious problem is long-term rejection, in which the body slowly begins to kick the organ out. That happens because the immune system doesn’t recognize the antigens, or foreign proteins, in the organ.

“Unless it’s being suppressed, the foreign proteins are recognized as ‘not-self,’” says Tibayan. “That would normally start a cascade of responses that is usually reserved for a viral infection, and so to keep that from happening, at the very least to slow it down from happening faster, patients have to be on immunosuppression.”

This can be a tricky juggling act for the care team, who — unlike most other surgeons, who are in and out of the patient’s body — work with a recipient for the rest of their life. Lungs are exposed to the outside world, to all the cold viruses and smoke and fungal spores that float around in our air. While most pathogens won’t bother a healthy pair of lungs, says Tibayan, people who are immunosuppressed are less likely to fight them off.

Even when the immune system accepts donated organs, it can take time for the recipient to mentally identify them as their own. For a long time, Martin carried a sense of “not-self” about his heart. “I had always thought I had this other person’s heart in me,” he says. Then, a few years after his transplant, he attended a music performance where the composer asked the audience members to listen to their breathing and heartbeats as part of the show. “I’m a super straight Lutheran. I’m definitely not woo-woo,” laughs Martin, but he closed his eyes and joined the visualization.

“I was kind of picturing our cells, and how they’re kind of like fish, like little waves. And I was picturing my body and all the waves going one way, and my heart going another way, like it was separate from me. And as I was sitting there,” he pauses, “they lined up.”

From then on, it was his heart.

When working with new recipients, Kilbourne asks them to take ownership of their new organs: “Those are your new lungs,” she tells them. And yet Nalley never felt that his lungs were quite his; they were always Ryan’s. And around 2010, his body started to reject them.

Chris got sicker. He went back on the transplant list, hoping for another call.

* * *

“There is no guidebook for this,” says Portell. “I wonder every year on the anniversary of P.J.’s death, what do I do?”

Portell always celebrates P.J.’s birthday. She imagines him as he would be now: a grown man in his early 30s. She imagines him going out with friends to a pub in London. But during his last birthday, she wondered if that was really the right thing. She texted a friend, asking for a change of plans. They stayed in, ordered a pizza, and watched Indiana Jones.

“It’s something P.J. would do,” says Portell.

When I asked her if she feels like she enacts his personality, if some part of him lives in her, she hesitates. She wants to talk about P.J., not herself. Sometimes the line between them gets blurred, and other times it seems so clear. “Every once in a while I think …” she trails off. This deep intimacy that recipients feel with their donors was hard for them to describe. It was self, and it was not-self. It was both.

We carry our parents, but also our doctors, nurses, teachers, organ donors: All these people flicker in us, tiny, guttering lights shielded from the wind by cupped hands.

For donor families, this distinction can often be hard to navigate. West doesn’t want to take her relationship with Nalley for granted; she tries to give him space. “I’m so thankful and blessed that he’s willing to be a part of my life,” she says. She creates mental barriers for herself because, given unlimited access to Nalley, she says she would treat him like her own child.

For Nalley, the boundaries are less important. “I guess she’s afraid to mess up the donor dynamic by involving herself,” he says. “But I’m like, ‘We’re family. I have your son’s DNA in me.’”

* * *

Robert Bartlett is an average-looking older white man: combed gray hair, a large nose, a University of Michigan lab coat. He has a long and well-funded career of medical research, and he’s famous for one thing in particular: pioneering the use of ECMO in children.

Heart recipients like Martin usually spend some time on ECMO or a similar technology. Basically, the blood is drained out of the right side of the body, goes to an oxygenator, then is pumped to the other side of the body to provide circulatory support. It’s used for bypass in heart surgeries and, in some cases, for lung transplants as well.

Bartlett began using ECMO to treat acute respiratory failure in infants in the 1970s. Until around 10 years ago, it wasn’t very effective, says Tibayan; recent progress in both training and technology have greatly improved outcomes. In other words, fewer babies die.

My son is not a machine, but he is alive because of them.

When I search for Bartlett on Google and find his picture, I start to cry. I’m never going to meet this guy, but he saved my son’s life.

Staring at his picture, I feel strangely connected to him. My son is alive because Bartlett is alive and because Bartlett chose to study medicine and chose to research this specific machine and because people in the past decade have been trying to improve ECMO so that fewer babies die. It is very difficult to describe that level of gratitude, to explain how my son is his own individual self, a happy little boy with no memory of being on ECMO, and that he also owes who he is, at least in part, to a gray-haired man from Michigan.

ECMO is now being investigated for use in ex vivo lung perfusion, a process that essentially keeps donor lungs healthy and oxygenated during that key, quick transfer window between donor and recipient. It’s being considered for use in keeping alive a brain-dead patient with healthy organs, so that those organs might go to people who need them. According to the University of Michigan, where Bartlett’s lab conducts research, “ECMO is very good at treating acute lung disorders. But it can’t help patients with chronic progressive lung diseases like COPD, pulmonary fibrosis or cystic fibrosis. Eventually these patients are left with just one option: a lung transplant.”

* * *

Nalley’s second transplant — the one where he received Hans’s lungs — was complicated. Usually a patient leaves the ICU within a week and starts physical therapy, but Nalley had a lot of scar tissue to cut through from his first transplant. His body didn’t recover from the surgery as quickly.

“He had some bleeding in the areas around his lungs after the transplant, and he had an infection, so he was in the ICU for a much longer time,” explains Kilbourne.

Cystic fibrosis patients, who are often young, are good candidates for retransplant. The care team evaluates a retransplant based on survival rates. According to recent studies — with extremely small sample sizes, considering how few people receive retransplants each year — the one-year survival rate of a pulmonary retransplant is around 71.5 percent. The five-year rate is about 34.5 percent. Nalley’s lungs are on year six.

“They told me the only reason I did it is because I’m stubborn and that stubbornness pushed me through the after-transplant process,” says Nalley, laughing. But he’s serious: The likelihood that the lungs will be put to good use, and that the patient will live a long life, is one thing the care team considers when looking at transplant recipients. Donated organs are a scarce resource; to give someone a second pair of lungs is to take them away from someone else. The team wants to be sure the recipient will be able to use those lungs as long as possible.

Nalley isn’t messing around with his time. He knows he may someday need another set of lungs, but he’s not sure he’ll get them. He lives in Richmond with his wife and two dogs, and they travel a lot. They’ve been to Lebanon, Thailand, and the Caribbean. He chats with West at least once a week. He got a tattoo sleeve that shows a pair of lungs with the words Donate Life.

* * *

The choices of others — to pursue medical training, to serve in the health care field, to give the body to others in death — are choices that we ourselves do not get to make, but they have a profound effect on our survival. In her book On Immunity, essayist Eula Biss describes how medical decisions are often thought of as individual acts, yet they have powerful consequences for entire communities. “We have more microorganisms in our guts than we have cells in our bodies — we are crawling with bacteria and we are full of chemicals. We are, in other words, continuous with everything here on earth. Including — and especially — each other,” Biss writes. She posits that a sense of interconnectedness should govern our health care choices; that we cannot live in a bubble, mentally or physically, because our bodies exist in relation to one another.

Anyone who has spent a lot of time being sick, or has had a family member who has been very sick, has a network. We build connections to keep ourselves whole. Our medical experiences become our emotional makeup, our belief systems, our anxieties, our literal bodies. Some of these connections we can’t control. Others we can. The choice to donate an organ can be a checked box at the DMV or a conversation with a spouse. You strike one little match with that action, then probably forget about it. But down the line, someone else may carry that fire inside them — a flicker that binds body to body, the hiss as the wick catches, becomes a steady flame.

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

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

Editor: Cheri Lucas Rowlands