Search Results for: memory

Workshopping Workshop: A Reading List

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When I think of workshop, I think of fluorescent lights and scuffed linoleum. Long tables configured into a square, beverages — iced tea, coffee, kombucha, root beer, lemonade, reusable metal water bottles — dotting the square’s perimeter. A window, maybe, where crows blur past just before the last light of day fades. Notes of a distant marching band needling their way into the room. I think of what is insisted — we need to know more about the speaker. The arguments over minutiae — does the sidewalk cover the length between her house and the gas station? The compliments, the summaries, the probing, the attention to detail, the wanting for more, the gifts of enthusiasm, the rooms where cultures of respect flourish, and those where someone tugs at a thread until any sense of community unravels.

What I mean to say is workshop is a tender ecosystem, one that connects the physical — stacks of marked paper, chalkboards, typed longform letters, uncomfortable chairs — with what often seems intangible or difficult to put into words. At its best, for me, workshop has held a kind of magic. In those spaces, I felt a sort of inner calm, a knowing that the others in the room brought their most complicated, nurturing selves to my pages and me to theirs. We demanded a lot from one another — held each other accountable for lazy moves, questioned form, encouraged experimentation — but did so with trust, and often joy.

But it wasn’t always that way. For a long time, during my undergraduate and MFA, I wrote almost compulsively about neurological illness; after losing parts of my memory, writing was not a salve, necessarily, but granted me the illusion of control, a feeling of power over my body and history that I often felt I lacked. The problem with writing about invisible illness, though, is simply that: it’s invisible. Invisible to doctors, my former Division I coach, former friends, administrators, professors, nearly anyone with authority to declare me well or unwell. It is also, due to the careful ways I choose to dress and present myself, invisible to peers. Once, in workshop, I submitted a piece about one of my neurological episodes in which I repeat the same word for hours on end, my head lolling back and forth, out of my control. In the hallway after my session was over, a peer, repeating the harm done to me by disbelieving medical professionals and so many others, quipped, “Well, I’ve never seen you do that before,” in a tone that suggested she didn’t trust the veracity of my narrative, or that she didn’t consider my illness grave enough to be worth writing about.

Different brushes with disbelief and a sundry of other insensitive questions have peppered my workshop experience over the years, both in workshop and in the halls after, but haven’t caused me any significant grief. As a white woman who passes as able-bodied when not episodic, I experience privilege in many ways. However, these questions from peers are usually rooted in deep-seated cultural misconceptions about what we perceive disability to be, and are rarely corrected by instructors, who have at times allowed the personal questions about my symptoms and condition to pass within workshop as being about “craft.”

As I move from workshop participant to workshop facilitator, I have been deeply considering exclusionary practices and systems of power — not only in workshop, but in academia as a whole — that allow for the perpetuation of harms directed toward people of color. In workshop, what, if anything, can be written on a syllabus or spoken aloud in class to ensure that each and every participant’s work is read with care? What is the role of a facilitator? What texts might be read throughout the course as a means of encouraging workshop participants to grapple with their own identities?

The vital essays curated here are not necessarily a direct answer to these questions, but they bring to light the violences engrained in workshop settings as well as offer resources for meaningful change.

1. Unsilencing the Writing Workshop (Beth Nguyen, April 3, 2019, Lit Hub)

When I asked a group of writers how they would describe their workshop experiences, responses included: crushing, nightmare, hazing ritual, test of endurance, awful, ugh. I’ve heard of students drinking before their workshops; I’ve heard of students crying in class and after it; I’ve heard of students never looking at their workshopped pieces again.

Most workshops follow the same format: the writer is silent while peers question, critique, and praise their piece. When Beth Nguyen began teaching her own, she wondered what it might mean to invite writers into the process by allowing them to speak. Nguyen ruminates on how unsilencing the workshop shifts dynamics of power, as well as offers practical examples from her courses to help others make similar beneficial change.

2. The Psychiatrist in My Writing Class and His ‘Gift’ of Hate (Rani Neutill, May 2019, Longreads)

When Rani Neutill, the only woman of color in class, submits her piece to be workshopped, a white psychiatrist responds by saying he hated her piece, and wonders aloud “when this writer learned to speak English.” Neutill examines the ways in which people of color “do not have the privilege of only showing, not telling” in their work, and questions the structure of workshop, the role of her instructor, and the multitude of ways in which the white psychiatrist inflicts harm through his treatment of both her and her work.

His commentary is laced with paternalism and condescension. It is spiked with hate and the repulsive natures of his probable desires. It undermines me. He probably does not register this. I can psychoanalyze him, but he cannot psychoanalyze himself. Such is a white man’s privilege.

3. The Optics of Opportunity (Hafizah Geter, June 19, 2019, Gay Magazine)

Among many other atrocious acts during a mysterious fellowship funded by Barnes & Noble, writing instructor Jackson Taylor uses the n-word in class. Hafizah Geter, a participant in the fellowship, not only reveals the many problematic elements about the fellowship and its origins, but also illuminates how larger systems of power continue enabling racism.

As I pushed back against Taylor’s racism, I did so consciously held hostage by my silent white peers and their white perception and notions of respectability — who heard our objections to a racism they couldn’t muster the energy to see, and thus would not allow our concerns to hold water.

4. To Know By Heart: Workshop, Whiteness, and Rigorous Imagination of Ai (Claire Schwartz, December 25, 2015, Electric Lit)

In ruminating on a memory from workshop with Professor Elizabeth Alexander at Yale, her study of Ai’s poem, “Child Beater,” and the ways in which she and other white family members and friends are complicit in perpetuating conditions that allow for racism and violence, Claire Schwartz comes to complicated conclusions about how language connects us to acts of both harm and beauty.

But. Can you imagine hearing and not intervening in a racist joke? Can you imagine attending a university that invests in private prisons? Can you imagine being an American and never learning black history? Can you imagine studying the Holocaust without talking about Japanese internment? Can you imagine teaching a science class without Henrietta Lax, without the Tuskegee Syphilis Experiment, without any thought at all to whose bodies have produced your knowledge?

5. When Defending Your Writing Becomes Defending Yourself (Matthew Salesses, July 20, 2014, NPR)

I have had “good” and “bad” workshop experiences, but for me whenever race comes up, it feels, somehow, traumatic. While most issues in workshop are presented as universal to story, race can come off as a burden personal to writers of color.

Matthew Salesses reckons with the ways in which writers of color are too often expected to defend not only their work, but their selves, in workshop, and presents ways in which workshops can be constructed so that the burden falls not on writers of color, but on instructors and peers.

6. Political Revisioning: How Men Police Women’s Anger in Writing Workshops (Jen Corrigan, October 22, 2018, Bitch Magazine)

When Jen Corrigan writes about her anger for workshop, a man named Andrew responds, “I just didn’t really believe it.” Corrigan explores the ways in which women’s anger is dismissed and disbelieved, both in workshop and outside of it, historically and at present, and advocates for workshop participants to scrutinize their own belief systems and biases before entering into conversation.

At first, I wondered if I was being too sensitive. I’ve never been overly delicate about being critiqued, but I instinctually questioned my perception of Andrew’s criticism. But, really, I wasn’t upset about Andrew’s critique of my essay because he had not critiqued it at all; he had critiqued me, my anger, and the way I processed and responded to aggression from men.

***

Jacqueline Alnes is working on a memoir about running and neurological illness. Her essays have been published in The New York Times, Guernica, Tin House, and elsewhere. You can find her on Instagram and Twitter @jacquelinealnes.

Memories Dressed Up With Wishes

Illustration by Homestead

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

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

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

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

Searching for The Sundays

Hayley Madden / AP

David Obuchowski | Longreads | July 2019 | 35 minutes (6,336 words)

 

What makes a band your favorite band? Is it the quality of their songs? Is it their politics? Is it because they pioneered a certain sound? An emotional association? I don’t know. Any of those are valid reasons for crowning a band as your favorite.

For most of my life, starting in high school through my 30s, the Smiths were my favorite band. And to be sure, I still love the Smiths. But a few years ago, I came to a simple and somehow comforting realization: My favorite band is the Sundays.

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.

***

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

Reading Lessons

Type by VectorLab / Getty, Illustration by Homestead

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

 

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

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

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

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

Read more…

The Soviet Children Who Survived World War II

Longreads Pick

Svetlana Alexievich’s Last Witnesses, a 1985 collection of testimonials from then-Soviets who were children during the Second World War, has been translated into English and excerpted at the Paris Review. “It became connected like that in my memory, that war is when there’s no papa.”

Published: Jul 17, 2019
Length: 9 minutes (2,454 words)

Bundyville: The Remnant, Chapter Three: The Widow’s Tale

Illustration by Zoë van Dijk

Leah Sottile | Longreads | July 2019 | 25 minutes (7,518 words)

Part 3 of 5 of Bundyville: The Remnant, season two of Bundyville, a series and podcast from Longreads and OPB

I.

I have seen LaVoy Finicum die and die and die. 

Log onto YouTube and watch Finicum’s end, spliced, paused, and dissected by people who never knew him but who, too, have again and again watched it happen.

When Finicum was killed, law enforcement officers were acting on an opportunity to arrest the leaders of the weeks-long Malheur National Wildlife Refuge occupation in Oregon. Finicum was one of just a few actual ranchers who joined the Bundys’ occupation. Ranching was Finicum’s dream — something he’d only started doing once he turned 50. He didn’t grow up a rancher, but he intended to die one.

In the final seconds of his life — on the very last day of his 54th year — Finicum proved to be even more of a true believer in the purpose of the occupation than the Bundys themselves. 

 

Keep the characters of Bundyville: The Remnant straight with this character list.

That frigid late January day, an informant tipped the feds off that cars carrying the Bundys and other leaders would be traveling to Grant County, Oregon for a meeting with citizens and the area’s sheriff, who was allegedly sympathetic to the cause.

But the group never got to the meeting. Before they could arrive, members of the FBI’s Hostage Rescue Team and Oregon State Police SWAT team stopped the cars on a remote bend. Ammon Bundy followed law enforcement orders to get out of the car with his hands up, kneel on the ground, and crawl towards the officers. But Finicum refused to surrender.

Suddenly Finicum, who some viewed as a grandfatherly voice of reason back at the refuge, was yelling at the officers from his driver’s seat. He told them: “Back down or you kill me now.”

“Boys, you better realize we got people on the way,” Finicum yelled. “You want a bloodbath? It’s gonna be on your hands.”

In his back seat, the other occupants of the car — Ryan Bundy, a grandmother named Shawna Cox, and 18-year-old gospel singer Victoria Sharp — frantically tried to call people back at the refuge, but realized they’d been pulled over in an area with no cell service.

“I’m going to be laying down here on the ground with my blood on the street, or I’m going to see the sheriff,” Finicum yelled out the window. Finicum told the occupants of the car he would leave, try to get help. “You ready?” he asked. 

“Well, where’s those guns?” Ryan Bundy responded, telling the other passengers to duck down. 

“Gun it!” Cox said. “Gun it!” 

Finicum slammed the accelerator. Driving at over 70 miles per hour, careening around a bend, the sound of bullets pecked at his truck. Up ahead, the FBI and Oregon State Police had blocked the road. 

Finicum jerked the wheel — either to avoid hitting the road block, or to speed around it altogether. “Hang on!” he said. The truck crashed into deep banks of snow, sending up a white wave that made it look as if he’d plowed over an FBI agent. Finicum leaped from the truck, hands raised. All around him, officers yelled, “Get on the ground!”

This is all on the internet: Cox’s cell phone captured the conversation and fear in the truck, drone footage shot from above shows the lone white Dodge Ram pickup. 

You can see the crash, see the driver’s door fly open. You can see Finicum hop out as he taunts at the police that they’re “gonna have to shoot me.” You can hear the three bullets — bang, bang, bang. Dead. 

Every time I watch the video I think I’ll hear some new intonation, some missed revelation, and yet Finicum always dies the same. Three pops. He doesn’t jump or yelp. He simply crumples: a body tense and alive one second, a heavy sack of bones dropped to the ground for eternity the next. A puppet without a hand. Gravity stronger than spirit.

As Finicum stumbled in the snow, he yelled to the officers to shoot him before reaching multiple times toward his jacket. The overhead video captures that. Later, official reports said Finicum had a loaded 9 mm handgun in his inside jacket pocket. The shooting was ruled justified.

And yet now, three years later, a movement of people across America see his death another way entirely: As an assassination. An execution. A carefully-calculated hit on a lifelong member of the LDS church and short-time associate of the notorious Bundy family. Finicum is seen as a friend to men whose favorite part of the U.S. Constitution is the line about well-armed militias. The snowy road where he died is Finicum’s own Golgotha. The FBI roadblock is referred to, in some corners of the internet, as “the killstop.” Read more…

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

Illustration by Courtney Kuebler

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

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

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

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

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

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

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

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

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

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

The Big Sick

Illustration by Homestead

Soraya Roberts | Longreads | July 2019 |  7 minutes ( 1,978 words)

 

“The sickness rolled through me in great waves.” Whenever I’m sick, I read The Bell Jar. I know, ironic, but there’s a chapter where Sylvia Plath describes her central character having food poisoning and it always makes me feel better — her ability to capture how urgent it feels, how relentless, how it reduces you to a vehicle for vomit and diarrhea. How cleansed you are afterwards just for you to do it all over again, eventually. It’s comforting that someone writing two decades before I was even born not only experienced this exact feeling, but could reproduce it so clearly. “There is nothing like puking with somebody to make you into old friends.”

Nostalgia is a kind of vomiting. It’s not like you re-watch your favorite parts of Heathers because bile compels you to. But there’s the same idea of deconstructed repetition, although in nostalgia’s case, it’s so you can climb back into your memories, where you can lock yourself into a space untroubled by reality. It’s a thing that keeps coming up (sorry) because of how we manufacture culture now — not just online but in a world owned by big media. There has always been significant reworking of past cultures, but I don’t think popular culture was ever the commodity it is now, where Mickey Mouse isn’t just a drawing but an intellectual property (IP). At no other time has mainstream culture felt like such an opiate, so tied to appealing to mass comfort. Out of this comes the new season of the bingeable Netflix series Stranger Things, which is less its own story than a collection of its creators’ pop culture memories; Disney churns out live-action remakes of every one of its films until the elephants come home; and then there are the countless stories in the press celebrating the anniversaries of every movie/show/album ever made.

I guess you can’t really blame anyone for wanting to keep puking up the past when the present is so insufferable. Except anyone is not everyone, and the relief is a ruse. Read more…