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The State of Waiting

Photos and artwork throughout courtesy of Wafa Almaktari. Background image of Sana'a by Santiago Urquijo/Getty Images. Illustration by Cheri Lucas Rowlands.

Caitlin Dwyer| Longreads | May 2021 | 22 minutes (6,168 words)


This story includes audio interludes. Listen to Wafa talk about her life, her relationship, and Yemeni culture through cherished objects.

Read an interview with Caitlin about her reporting and writing process for this story.

She is in a Toyota RAV4, somewhere in the mountains of south-central Yemen. It is hot, desert hot, and the AC doesn’t work. There is no road. The driver maneuvers the car through dry riverbeds, which show the cracks of prior floods. 

In the back seat, Wafa Almaktari tries not to throw up. She tries not to think about the men with guns who will stop them, demand money, and search their baggage over 50 times in the next 16 hours. If they don’t like her, or she cannot pay, she may disappear in these hills. She tries not to think about the fact that the driver, hired privately for $300, does not have a map.

How the hell does he know where he is, in the middle of the mountains? she wonders. But the alternative — a bus that blunders at even slower speeds, and attracts even more attention at armed checkpoints — was unthinkable. She has to get through the mountains as quickly as possible, because Moutaz is waiting for her.

It is June 2019. Moutaz Al-Qershi, her fiancé, lives in the northern Yemeni capital city of Sana’a. He was going to meet her when she landed in the port city of Aden. But she knows she can’t trust herself not to fling her arms around him and kiss him. In the U.S., where Wafa has lived for the last four years, public affection is normal for young couples, but in Yemen, unmarried couples can’t publicly embrace. She told him to wait at her family’s home.

Not that Wafa cares about what other people think. She’s waited too long. She has a lady in Sana’a baking her wedding cake (she found her on Facebook). There is a butter shortage, but she’s got connections. She’s even got a female DJ lined up.

“If Moutaz was not in Yemen, I would not go. I would not even visit,” she says. But he is here, and so she has returned — enduring the heat, the nausea, the armed checkpoints —  to a country in the midst of violent civil war. She does not know if she will be allowed to return to the U.S. after her wedding.

“Home is where Moutaz is,” she reminds herself. She twists the ring on her finger. She hopes — no, she knows — coming back was the right choice.

* * *

In 2021, the small Middle Eastern nation of Yemen ranks as the world’s largest humanitarian disaster. Civil strife has mired the country in famine, cholera outbreaks, and violence. Since 2015, a complex set of combatants has battled for control: armed rebels in the north, known as the Houthis, who rule the capital; Saudi Arabian forces, who are determined to stop the Houthis; Al-Qaeda in the Arabic Peninsula, who rose up briefly to fill a power vacuum; and southern separatists in the port city of Aden.

Wafa and Moutaz met before the war. Although a poor country, Yemen had been a democratic one. During the Arab Spring, protesters had demanded reforms, leading to a transitional government. In 2014, the transitional president was struggling to stabilize the country. Soon, international embassies would begin to close, and the militant group Ansar Allah, often referred to as the Houthis, would take the capital. Saudi Arabia would step in to oppose the Houthis, whom they saw as Iranian proxies. By 2015, ports would be blockaded, airports closed, and cities bombed.

But politics mattered very little to two young people who, despite societal restrictions and the potential scandal, were falling in love. 

Wafa and Moutaz exemplify the long-haul love story of many immigrants, whose children, parents, and spouses remain on the other side of geopolitical barriers.

At the time, she was in high school and he studied electrical engineering at Sana’a University. Wafa had a huge, trusting smile, expressive eyes, and a laugh that rose up out of her chest. Moutaz was a serious, slender introvert, prone to long conversations on mathematical concepts. He was detail-oriented; she was all big ideas. She recalls how taken aback he was during their first interaction: “All the ideas that I tell him, and my hijab is not very on point. … I don’t have makeup on my face. So he’s like, you’re not normal.”

Despite the differences in their education, Moutaz didn’t intimidate her.

“It was this very weird chemistry that was between us,” she says.

They kept their relationship secret. Young Yemenis couldn’t date without being engaged or married, but the two of them did “all the crazy things in a very conservative society,” Wafa says. On one of their dates, Moutaz thought it would be romantic to ride Arabian stallions. The huge horses terrified Wafa. They were out in a sunlit field, beyond the city limits, far from prying eyes. She remembers watching him feed the animals, showing gentle care. “Although I was scared, around him I was very safe,” she recalls.

At the time, she had been suffering from tonsillitis and had been told not to eat any ice cream to avoid a possible surgery. On the way home, Moutaz stopped for a treat.

“I was like, oh, this is love. You’re giving me ice cream that I’m not supposed to eat, so I know you love me,” Wafa recalls with a smile.

That subtle spirit of rebellion would permeate their relationship for the next seven years. Soon what divided them would not be family objections, but the policies and decisions of world nations: who allied with whom in the war, who offered visas for Yemeni citizens, who blocked the airports. Surrounded by immigration restrictions and bound by national policies they cannot control, Wafa and Moutaz have refused to give up on each other. For them, love has become a kind of defiance of boundaries, borders, and rules. Separated for years, they search for ways back to each other.

* * *

In the movies, love resolves itself quickly: Two chemicals combine, and either reject each other or dissolve into a single solution. It’s more difficult to convey the reality on screen. Love hits, and we wait, watching the colors creep up the pH strip, waiting for the hiss of reaction. Sometimes we know what the result will be, but still must wait for proof.

Most people wouldn’t watch a film of all those empty hours. We like the catharsis, the moment of triumph, the release of tension: a climactic kiss in the rain. But for many people whose loved ones live across borders, separated by visas, wars, or financial circumstances, there is no such easy resolution. Patience becomes the story.

Sometimes — as in Wafa’s case — waiting feels unendurable, and migrants buck against the helpless hours, months, and years. They might act to gain a sense of advocacy or autonomy, but rarely do the massive national circumstances that surround their situation shift.

Wafa and Moutaz exemplify the long-haul love story of many immigrants, whose children, parents, and spouses remain on the other side of geopolitical barriers. They want to be together. They long for the normalcy of family dinners, daily commutes, and coffee dates. And so they wait.


* * *

Wafa arrived in the U.S. in 2015, joining her mother, Susan Kassim, and leaving her secret boyfriend behind. The two had been separated for a year, first by visa processing and then by war.

Kassim hoped her spirited, outgoing daughter would acclimate well. Three weeks after arriving in Oregon, Wafa started college, taking ESOL and math classes at community college. She then transferred to Portland State University to study business. 

But Kassim soon noticed that Wafa locked herself in her room for hours a day, talking on the phone to a “friend” back in Yemen. Like many moms of teens, she became suspicious. It wasn’t that a romantic connection back home was bad; in fact, if the phone kept Wafa from staying out late and going on unsupervised dates, Kassim was all for it. But she didn’t want secrets. 

So she watched. She saw that Wafa didn’t clean her room or make her face up for video dates. She noticed that they laughed a lot. She liked that Moutaz had a calming influence. Afraid he would get frustrated with Wafa’s sass, Kassim urged her to be more demure.

Wafa didn’t agree: “This is me. If I change then I’m not going to be me. It’s like fooling somebody.”

Satisfied, Kassim gave her blessing — but required that Wafa finish college before any marriage could take place.

So they waited. Donald Trump became president. Anti-immigrant rhetoric in the U.S.  rose. And in January 2017, Trump signed Executive Order 13769, which banned U.S. entry for several Muslim-majority countries, including Yemen. Before the ban, the wait time for a family visa to the U.S. could range from months to several years — and Moutaz hadn’t even proposed yet. After the ban, they were faced with an indefinite wait.

Wafa knew she had only one choice: “I’m going to fight.”

Trump’s travel ban worked the way it was intended; it forced immigrants to choose between their families and their visas. It deterred. It broke hearts, if not spirits.

Her defiance shifted to her new country, which seemed to be rejecting her love and her future. She became more outspoken about immigrant rights. At her job, she began questioning a manager about microaggressions. She joined her school’s Muslim Student Association and developed her campus activism, starting her own student coalition in 2017.

A few years before, Saudi Arabia had begun an aerial bombing campaign called Operation Decisive Storm. Originally planned to last only a few weeks and drive the Houthis from the Yemeni capital, it instead became a prolonged aerial bombardment of the city. Sections of old Sana’a, built before the 11th century, were destroyed. Thousands of civilians died in those and subsequent airstrikes. The Houthis remained in control of the city.

Moutaz was working on an MBA when Operation Decisive Storm began. Bombs fell while he commuted to and from classes.

“At first it was intimidating and scary, but with time I got used to it so quick because the airstrikes would last for long hours and would occur daily,” he wrote in a WhatsApp message. “It took me two weeks to get used to the fear, the loud bombing, and accept the reality that I was living in.”

He adopted an attitude many Yemenis would come to embrace: If he was going to die from a bomb, so be it. If it wasn’t a bomb, it would be something else. Life had to go on.

“Although it was hard to be lonely during that time, when Wafaa left the country I felt much better. I worry about her more than myself,” he wrote.

They spoke every day on WhatsApp, sometimes trying seven or eight times before they could get a connection. When she heard about a new bombing, she would often call, panicked, to make sure he was all right. Video dates helped Moutaz get through the stress of school, separation, and airstrikes.

While Wafa grew more outspoken, Moutaz developed a stoic endurance. “I never saw our separation as a goodbye; rather I saw it as ‘see you soon in better circumstances,’” he explained.

In late 2017, Moutaz sent her a ring — ostensibly to ward off interested men from whom Wafa got a lot of attention. But along with the ring came 365 handwritten reasons why he loved her. A proposal came the following year.

“Hell yes, I want to marry you,” Wafa recalls thinking. They both knew what that meant: He was banned from coming to the U.S., so she would go to him, perhaps putting her green card in jeopardy. On the day that she submitted her last final exam to graduate, against the best advice of nearly everyone, she flew back to Yemen.


* * *

Americans often think of immigration policy as a grand national project. Politicians wax hopeful or fearmonger, drawing broad statements about the way we view ourselves as a nation, or the way we think of the Other. Such thematic strokes capture the immensity of the issue, but they fail in the details. 

Details like these: One day, Wafa walked into a grocery store in Beaverton, Oregon. There were tulips in pots, cheap sweatpants on racks, and sale bins of candy. Behind the standard smells of rotisserie chicken and plastic was another scent: Moutaz’s cologne. Someone in the store was wearing it. The smell overwhelmed her, and she collapsed on the floor in grief.

Starting in 2017, Donald Trump’s immigration policies explicitly used family separation as a means to discourage migration to the United States. This was a new twist: not just to separate families currently in violation of immigration law, but to use separation as a deterrent against future migration. 

Soon what divided them would not be family objections, but the policies and decisions of world nations: who allied with whom in the war, who offered visas for Yemeni citizens, who blocked the airports.

But for many years prior to Trump’s administration, U.S. immigration policies had been de facto separation policies. Undocumented parents could be deported, while their U.S.-born kids remained in the country. The parents often had little legal recourse. Long processing times, high fees, and complicated paperwork have meant that husbands and wives, mothers and daughters, kids and parents, are often separated for months or years while they wait. In Moutaz’s case, and the case of thousands of other applicants sidelined by the travel ban, the separation became indefinite.

“I talk to a lot of people every day [about] how hard it is,” Wafa says. “It’s just emotionally draining. It is expensive, it is risky.” 

Wafa has filed an I-130, Petition for Alien Relative, for Moutaz. It costs over $500. Add an international flight: When his case finally comes up for processing, he will need to fly to Malaysia, Algeria, or another transit country; the U.S. embassy in Yemen has been closed since 2015. Add $300 to hire a private driver for the 16-hour trip through mountains to Aden, which has the country’s only functioning airport.

“The Yemenis who have fled the country are very often from the middle and wealthy classes. For the most vulnerable, there are very few opportunities to leave the country,” write Solenn Al Majali via email. Based in Jordan, Al Majali studies Yemeni emigration at Aix-Marseille University and the French Institute of the Near East, and is a non-resident fellow at the Sana’a Center for Strategic Studies.

Wafa knows she is lucky. Her dad studied abroad in the 1980s, and her eldest brother was born in the U.S. He was able to sponsor some of his family members and help them escape the worst of the war. As a U.S. permanent resident, she has some leverage.

“If I didn’t have the resources or the money, I would not be able to apply for him. If he didn’t know how to speak English, he’s not going to come. If they see him at the embassy and he is not dressed well or he doesn’t speak well or he doesn’t have a career, you know, anything, they can just reject it,” Wafa says.

Since 1965, the U.S. has been relatively open to family immigration, mostly as a result of the Immigration and Naturalization Act. That legislation got rid of quota systems based on current U.S. census data. It opened the country up to immigrant families from more diverse countries. Thought about generously, the 1965 act was “driven by recognizing that family units are critically important for happiness, well-being, economic prosperity,” says Duncan Lawrence, the executive director of the Immigration Policy Lab at Stanford University. (Full disclosure: Lawrence is a friend of mine.)

Support for families — from permission to find work to early access to ESOL programs — are the backbone of healthy immigration policy, according to Lawrence. But there’s one overwhelming factor in the health and well-being of families: keeping them together.

“If you had this magic wand of tools that you could use to positively impact families, I think that is probably one of the most powerful things you could do,” Lawrence says. Kids are especially vulnerable to separation from their parents, but all families suffer from the threat and reality of being apart.

No matter where we live, we take refuge in those we love.

There is a kind of helplessness to this process that overwhelms Wafa. Despite her defiance of the travel ban, which was lifted by President Biden in January 2021, she remains at the mercy of international law. She cannot speed Moutaz’s visa interview or guarantee that he will not be rejected. Will U.S. Customs and Immigration Services see their relationship as one of convenience? How does she prove that she truly loves this man who she has seen only twice in five years?

There have been times when she felt like giving up and going back to Yemen. At least they could be together. In that sense, Trump’s travel ban worked the way it was intended; it forced immigrants to choose between their families and their visas. It deterred. It broke hearts, if not spirits.

That kind of heartbreak leads a young woman to collapse in a grocery store. It sends her, desperate, back to a war zone.


* * *

Wafa arrived at her family home in Sana’a at night, after a harrowing 16-hour drive through the mountains. She still had the taste of vomit in her mouth. The smell of sweat clung to her. She dropped her bags off inside, briefly greeting her father before running out the back door.

Moutaz was waiting. Completely forgetting where she was, she burst out into the street and hugged and kissed him, not caring they were in public.

“I kept telling him, ‘This is a dream. This is not real,’” she says. “I think that night was the best night of my life.”

Planning a wedding in a war zone posed challenges. In 2019, four years of fighting had cost many Yemenis their businesses. Moutaz told Wafa that Houthis demanded a cut of private sales; the extortion, combined with the high price of goods, forced many people to move their businesses online. A 2015 Saudi-led blockade of the port of Hodeidah, where most Yemeni food had been imported, created massive shortages. Women especially had become Facebook entrepreneurs, making sweets and doing makeup from home. 

If he was going to die from a bomb, so be it. If it wasn’t a bomb, it would be something else. Life had to go on.

Wafa recalls the mixed emotions of that moment: “You feel guilty because you’re celebrating and you’re doing all these plans, and people are dying. People are dying out of hunger. People are dying in the airstrikes. Even the availability of things like who’s going to do the wedding cake. … I was telling him, should we downsize it? And he was like, ‘I loved you for five years. I’m not going to downsize my wedding and the celebration of love that we have.’”

Wafa also struggled to adjust to her Yemeni relatives. Her naturally ebullient personality, combined with years of living in American society, made her relatively intolerant of strict traditions. She invited Moutaz to tea at their family home, only to have her father kick him out. When an aunt complained that Wafa shouldn’t see her fiancé before the wedding, Wafa bristled: “I don’t really care what you think.”

Despite the tensions, a week later an imam proclaimed them married.

After the religious ceremony, she hugged Moutaz freely in front of others for the first time. It no longer felt wrong. “It just felt like, here we are. We worked hard. We waited. It was beautiful. And then we just danced the night out.”

More celebrations followed: a spa day for the women, donations of food to the poor. Wafa and Moutaz were still required to keep their distance from each other, a tradition they mostly ignored. They weren’t trying to anger their relatives; this formal celebration period just felt like another barrier to being together.

Finally, they had a party with hundreds of guests. Wafa wore a white, sparkling off-shoulder dress with a sheer cape. Moutaz wore a black tuxedo, his beard shaved close, and a dapper chain clipped to the vest. Their initials hung on the wall in huge gold letters, the W and M intertwined. They went back to a hotel afterward, without secrecy or shame.

They had agreed to write their own vows, but to read them privately. In the hotel, Moutaz pulled out a sheet of paper. To her horror, Wafa realized she had forgotten to write hers.

“He was like, ‘babe, you crossed the ocean for me,’” she recalls, smiling. “‘That’s your vow.”’

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* * *

As Solenn Al Majali points out, Wafa and those like her, whose families have emigrated to escape violence, make up a small and privileged minority of Yemeni citizens. Most remain stuck in Yemen. 

Bordered by only two countries, neither of which is accepting refugees, Yemen remains geographically isolated. Saudi Arabia, Yemen’s neighbor, has been a main player in the conflict. The United States and other Western countries have supplied Saudi Arabia with weapons, tactical assistance, and training. The bombs that fall on Yemen are American-made. In turn, Iran has given some tactical and financial support to the Houthi rebels.

For those who remain, safety has shattered. The United Nations has found that all parties in Yemen share responsibility for war crimes, including “arbitrary deprivation of life, enforced disappearances, arbitrary detention, gender-based violence, including sexual violence, torture,” and more. Children are greatly at risk for death in airstrikes, but also from common childhood diseases and hunger, for which there is limited medical assistance. Saudi and United Arab Emirates blockades of the ports where Yemenis import food have created famine conditions. According to UN Secretary-General António Guterres, “More than 16 million people are expected to go hungry [in 2021]. Nearly 50,000 Yemenis are already starving to death in famine-like conditions.”

Back in Yemen, she faced physical risks unimaginable in Oregon — but she also had a sense of worth and belonging. She wondered if the two of them could make a life in Sana’a. Could survive, with just each other.

Before leaving office, the Trump administration designated the Houthis as terrorists, making international aid delivery trickier. While the Biden administration has reversed this decision and pledged to end support for the conflict, it remains to be seen how much they can disentangle themselves from Saudi allies.

For many Yemenis, the conflict no longer seems to have a foreseeable end. The civil society they knew is gone. There is only endurance and the slender hope of escape. For Moutaz, that hope is Wafa: “She always find[s] a way out,” he told me.


* * *

In the past, Yemen had coffee shops where people could gather and chat. There were seaside towns with beaches along the Indian Ocean. Men chewed qat at house parties, sharing the news. Ancient rammed-earth buildings were beautifully inlaid; brick minarets and winding stone streets were part of a long, proud history of Arab culture, from the Queen of Sheba to rare Islamic manuscripts.

“I keep that beautiful image for my country inside me,” Susan Kassim says.

When she flew back for her daughter’s wedding, the first time she’d been home in five years, her beloved Yemen had been transformed by war. The seaside towns where she had vacationed were destroyed. Community institutions struggled to operate. Buildings had been destroyed in aerial bombing campaigns, leaving swaths of ancient cities in ruins. The highway between Sana’a and Aden, formerly a brisk six-hour drive, was blockaded, forcing her to endure the same harrowing mountain journey her daughter had taken. More than anything, the guns scared her. Armed men patrolled the streets and stopped cars. There was no government, only martial law.

“But people there, they accept the reality. They are not afraid,” says Kassim. Her local relatives teased her that living in the U.S. had made her soft. “And I say no, it’s normal to be afraid. This is horrible.”

To her newlywed daughter and son-in-law, however, the summer of 2019 was bliss. They seemed so elated, Susan asked if they had been taking drugs.

“I’m like, ‘everything is perfect,’” Wafa says. Airstrikes hit a building nearby, and the couple slept through it. 

Being together had made them immune to fear — or perhaps it was a deliberate blindness. If they paid attention to the reality of their situation, they could see the precarity of it all. Wafa only had six months of travel allowance before she had to go back to the U.S. Despite court battles, Trump’s travel ban still stood in modified form, and visa processing for Yemeni citizens had ground to a near-halt.

For many Yemenis, the conflict no longer seems to have a foreseeable end. The civil society they knew is gone. There is only endurance and the slender hope of escape.

Ten days after the wedding, Moutaz got called back to work. Every six months to a year, he was given a new project-based contract by an NGO. He traveled outside the city to small villages, interviewed tribal communities about their needs, and attempted to provide infrastructure: bathrooms, running water, menstruation products, housing. The work fulfilled him, but it was dangerous. Soldiers often stopped his car, demanding to see travel authorization and receive bribes. He would make a few phone calls, and he could keep driving. But Wafa worried about a time when his answers didn’t satisfy them, when his bribe was insufficient, when he didn’t come home.

“It’s living without a government. It’s crazy I would say, because nobody is held accountable at all,” she says.

Moutaz didn’t have much choice. Humanitarian work, paid for by foreign NGOs, was basically the only viable income in Yemen in 2019. Government officials were paid sporadically; teachers had worked for years without pay; private businesses had suffered from ongoing power outages, infrastructure damage, and a shrinking economy.

He knew the risks. This is war, he figured; to survive, Yemenis have to support each other. Against those who threatened his safety, he bowed his head, then persisted. Mostly, he refused to be afraid — a form of defiance that Wafa tried to imitate, especially when her mother begged her to return to Oregon.

“It broke my heart to leave her in that situation that I saw with my own eyes,” says Kassim. Other than official wedding events, Kassim had refused to go out of the house for most of her visit, refused to acknowledge the changed city. She flew home, hopeful that she would reunite with Wafa at the end of the allotted six months.

Wafa wasn’t sure. She felt like she was living in an alternate reality: “We don’t have gas. So what? We walk. We don’t have electricity, so what? We have candles.” 

As the day of her U.S. flight approached, Moutaz refused to say whether he thought she should go. He wanted the decision to be hers. Once, when she woke in the middle of the night, he was sitting up in bed, tearing up. He would miss her, he said, but he felt relief knowing she would be somewhere safe. “So I’ll just trust you,” he told her.

She considered staying. Like so many emigrants, her heart was torn between her old home and her future in the U.S. In the end, she left Moutaz and was allowed back into the United States.

* * *

Love can blind us to reality, binding us only to our beloved — a person, a nation, a memory. We might refuse to see danger, or turn away from transformation, because to acknowledge the horrors of the world would be to betray a beloved relationship. We want to ignore everything except that sweetness.

No matter where we live, we take refuge in those we love. They shelter us, protect us, comfort us. When those people live far away, the best we can do is pretend. We wrap their late-night texts and dropped phone calls around us like a blanket, and rapt in a combination of memory and expectation, we close our eyes.

But love can also clarify. For many families separated by national borders, there are hopes of happy endings, but no illusions. Brokenheartedness can become a kind of resting state, which isn’t to say it hurts less — simply that it becomes a kind of ever-present harm. And as anyone who has ever hurt before knows, pain wakes us up. It focuses us, fixes us to the present moment. For some, the pain becomes a kind of a beloved, a stand-in for the real thing. For others, like Wafa, it becomes an itch you can’t stop scratching.

* * *

Wafa struggled to readjust to the U.S. A six-month newlywed, she felt more like a widow. Reckless, angry, she started graduate school and also a full-time job. She was trying, she thinks, to numb herself with endless work.

It wasn’t just missing Moutaz. Going home also meant resuming a role as an immigrant, rather than a citizen. It meant accepting a status shift that she hadn’t realized she resented so much.

“Back in my country, I live in a villa. I have a driver. I have people that do shit for me. Yet when we move here, people don’t know that. We start from zero,” she says. “It hurts … I’m this established person back home, yet here I’m irrelevant.”

That pain had started early. During her own emigration process in 2015, she had flown to Algeria for an interview at the U.S. Embassy. As the passengers disembarked, an officer in the airport asked who was a Yemeni citizen. Without further questions, he told them to get back on the plane and fly home.

“Just having the idea that an officer has the power to kind of humiliate me, target me, and say, ‘just go back to your country,’ I can’t go through that again,” she says. “If I ever have a child, I never want them to get the feeling that [they] are nothing.” 

Wafa wanted to give Moutaz the safety and freedom of the United States, but she increasingly wondered if the process was worth it. Back in Yemen, she faced physical risks unimaginable in Oregon — but she also had a sense of worth and belonging. She wondered if the two of them could make a life in Sana’a. Could survive, with just each other.


* * *

She had four brand-new iPhones in her bag, including two for the man with the ghost ticket. She dialed him when she landed in Cairo, but he didn’t respond. Airport security took her passport, and she had no ticket forward. 

It was July 2020. COVID-19 had transformed the world, including immigration routes. Countries tightened their borders, citing health and safety concerns. One of two routes to Yemen, through Amman, Jordan, closed down. Traveling through Egypt remained the only way back.

Wafa had a ticket to Cairo, and no farther. And now she was stuck in the Cairo airport with no passport.

After eight months of separation, she was trying to get back to Moutaz. She had quit graduate school, thrown herself into work at a bank, and saved her money. She applied for U.S. citizenship. Trump was still president, the travel ban was still in place, COVID had changed the rules, but she had to see her husband again.

If you could die from an airstrike, there was no time for distress about a virus. It raged, invisible, behind the more immediate dangers of war.

Following a nebulous web of diasporic Yemeni connections, she contacted a man named Khalid in Egypt. He strung her along for a week, promising a ticket in exchange for large amounts of money. Reckless and desperate, she agreed: “This is my last paycheck. I’ll just spend it all and go to zero balance.” She sent him $750 to buy her a Cairo-Aden ticket.

The limited flights from Cairo to Aden were coveted by Yemeni migrants living in Egypt. Over 500,000 Yemenis live in Egypt, according to the Yemeni Embassy in Cairo, more than a 700% increase from before the war. They often come to Egypt or Jordan on two-month visas for medical necessity and remain, applying for refugee status. Many see Egypt as a temporary refuge. They are often stranded in legal limbo, hoping for resettlement, but not recognized as refugees by the United Nations for geopolitical reasons, says Solenn Al Majali. As such, they have little access to resources like jobs, schools, or humanitarian assistance.

Wafa’s class and nationality privilege did not endear her to those she contacted: “I am a lady living in the U.S. trying to go to Yemen, when they [Yemeni refugees] are freaked out.” The people she spoke with had more pressing issues than leisure travel. They were worried about paying rent, buying food, and finding employment. Wafa understood their bitterness.

A few days later, Khalid created a ghost ticket: It looked like a real flight but did not guarantee her a seat on the plane. She would have to trust that someone would cancel so she could fly standby. In exchange for the ghost ticket, he asked her to bring two iPhones to his relatives in Sana’a.

If her first time going back to Yemen had been inadvisable, this time was worse. COVID-19 had killed several members of Wafa’s Yemeni family, including three relatives in a month. People had worn masks for perhaps the first month of the pandemic; after that, a mindset of numbness took over. If you could die from an airstrike, there was no time for distress about a virus. It raged, invisible, behind the more immediate dangers of war.

Wafa flew to Cairo in July, having spent the last of her money, clutching the ghost ticket like a talisman. After a few terrifying hours, airport security returned her passport, and Khalid texted her a link — for a real ticket to Aden.

* * *

Wafa had been in Sana’a for four months when it came time for Mawlid, the birthday of the Prophet. A traditional Islamic holiday, the 2020 Mawlid celebrations took a different turn. The city was bright with lights (Where did this money come from? Wafa wondered). The Houthis paraded tanks through the streets, and soldiers stood on every corner.

“I felt like they came out of a grave. They had guns and they had paint of green all over them,” she says. The soldiers frightened Wafa; to her, it wasn’t a celebration, but a show of military force. She was beginning to see how deeply the war had infiltrated everyday Yemeni life. Last summer’s newlywed blinders were finally off.

Airstrikes hit a building nearby, and the couple slept through it.

There were other signs of change, too. In 2019, Moutaz and Wafa had gone out to coffee shops and enjoyed their favorite snacks in the markets. Now, even married women and men could not associate on the street. Nonprofit work had become more difficult, as the Houthis refused NGO authorizations; Moutaz found himself unemployed for long periods. Due to a Saudi embargo, there was no fuel except at exorbitant black market rates, so they couldn’t drive anywhere. They stayed in their apartment and watched TV.

After the wedding, they had considered staying together in Yemen. A year later, that life seemed impossible. Wafa told Moutaz, “I can’t have a family here where education is corrupted. They teach kids what they want them to know, and it’s all about sacrifice, sacrificing themselves, and it’s just toxic. People don’t have dreams.”

Moutaz knew his wife would not survive long in Yemen. She had always been too big, too bold, too unwilling to follow the rules. Even if she ducked political trouble, her spirit would wither from the restrictions on daily life. He saw it happening already, in the shrinking of their ambitions: Find food. Find a good movie to watch, and an internet connection to watch it.

She told him, “I wanted to go into politics. I wanted to go into law school. I had dreams. But I don’t have dreams here because there’s not even space for dreams.”

* * *

As of winter 2021, Wafa is back in Oregon. Rain falls softly and constantly on the pavement outside. Home is no longer where Moutaz is, as she once thought. Home is the state of waiting, of not acting on her worst impulses to scream in frustration and cause a huge fuss and fly back to him.

The easy route would be to give up on the U.S. Move to Egypt together, or Jordan. Make a new life. The harder, lengthier, more painful route is continued separation. Despite her desire to be with Moutaz, she has chosen not to give up, because his future is more important than her own immediate happiness.

“I want him to have an opportunity to get out and see the world, or just have the power to choose,” she says. 

She wants to give one thing to him and their future children: a U.S. passport. She never wants them to be humiliated, or trapped, or in danger because of their papers. She wants to give them the space to dream.

For them, love has become a kind of defiance of boundaries, borders, and rules. Separated for years, they search for ways back to each other.

He, too, wants more. He doesn’t want to apply every three months for a new NGO job and then face another bout of unemployment. He doesn’t want to take another application test on his Excel skills, or endure invasive background checks, or bribe armed militants on his way to get villagers clean water. He wants to work in engineering, but more importantly, he wants to be his own boss, set his own hours, have power over his future. He wants to see Wafa smile.

“Your smile is the best thing [to] happen in the universe,” he wrote her in a message. 

Does love always resolve? Perhaps a cross-border relationship is less about cathartic reunion than the slow, patient intention to help someone else find joy. Like Wafa, Moutaz says migration is about the fight for his partner’s dreams. National policies may require a shift in how we imagine our futures, but they cannot negate the audacity of wanting a loved one to be safe and happy.

Perhaps love means deferment. Or the refusal to defer. Or the unshakable belief that someday, you’ll walk together to get coffee, as if it were the simplest thing in the world.

* * *

Caitlin Dwyer is a writer from Oregon. Her writing has appeared in Longreads, Narratively, Creative Nonfiction, The Los Angeles Review of Books, The Rumpus, Quartz, and Oregon Humanities, among others. She holds an MA in journalism from the University of Hong Kong and an MFA from the Rainier Writing Workshop. She also hosts the podcast Many Roads to Here and teaches at Portland Community College.

Editor: Cheri Lucas Rowlands
Fact-checker: Nora Belblidia

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