What does a neglected disease tell us about who we choose to take care of and why?
It was 10 am and already too hot in the San Fernando Valley. I drove along sand-colored hills that dwarfed houses with Spanish tiled roofs, past palm trees reaching high like hands raised in desperation. When the hospital appeared on my left, I thought for a moment that I was in my mother’s home city of Bogotá, where glass buildings sprout amid mountains.
In a way, that sense of disorientation was fitting. The hospital I was visiting, Olive View-UCLA Medical Center, has the only clinic in the US for the treatment of Chagas, a parasitic disease found mainly in Latin America—a disease that can turn the heart into a time bomb. While Chagas is the world’s third most common parasitic disease, few people in the US have heard of it, even amid increasing panic about Zika, another insect-borne infection associated with Latin America.
That’s something Dr. Sheba Meymandi has been trying to change since she opened the clinic here nearly ten years ago. Today, she manages care for about 200 Chagas patients, more than any other doctor in the country. Sitting in the cardiology department, Dr. Meymandi reminded me of a pencil, un lápiz. She had a straight back and thin wrists, and her hair was cut into a practical bob that framed a purposeful jaw. When I stepped into her office, she was in a white lab coat, tapping away at a keyboard, emailing a pediatrician in Kansas. “There’s a fifteen year old who has Chagas, and they don’t know what to do,” she said. “The mother’s been all over the place.”
The World Health Organization estimates that about eight million people are infected with Chagas, mostly in Latin America, with many millions more at risk. And the Centers for Disease Control and Prevention now estimates that in the US, 300,000 people are infected. Nicknamed “the kissing bug disease,” Chagas is carried by “kissing bugs”—triatomine insects that often bite people on the face, passing along a potentially deadly parasite. The bites occur in the dark, while people sleep, and are so painless they might as well be besos. Like the notorious Zika virus, Chagas can be passed from mother to child and turn into a debilitating chronic condition. But while the kissing bug disease affects more people in the US than the Zika virus, it has not caught the media spotlight. At least 12,000 people die of Chagas every year.
The teenager in Kansas was not from Latin America and had never even visited the region, making her one of a handful of patients Dr. Meymandi has treated who have tested positive for Chagas disease without ever traveling outside the US. When it came to this patient’s prognosis, Dr. Meymandi was matter-of-fact but hopeful. “The parents are going to sign the consent to get the drugs from the CDC. I’m going to start her on benznidazole first,” she said, referring to one of the two drugs used to treat Chagas patients. Since the medication is not FDA-approved, the family and their pediatrician will have to get it through the CDC, as if they were participating in an experimental trial. But the child is lucky: She is young and probably only recently infected. Once the disease enters the dormant stage, there is no definitive cure.
As Dr. Meymandi typed an email to the pediatrician in Kansas, I thought about the fact that this young patient had a one-in-three chance of waking up one day with a heart, a corazón, that would feel too heavy and big for her body. A heart whose walls would thin, develop scar tissue, and perhaps eventually even need to be replaced with a transplant. I thought about how startled the mother must be and wondered how much she understood about her daughter’s prognosis: Any heart failure would not come this year or next, but in ten or twenty or even thirty years.
I thought, too, about how most people with Chagas do not have email. They are poor. They are immigrants. They don’t even know that Dr. Meymandi is here in the San Fernando Valley.
And I thought about my auntie. Tía Dora was the reason I had initially found Dr. Meymandi. In the spring of 2010, my auntie was dying in New Jersey, although we didn’t know it then. At fifty-nine, Tía Dora appeared to be turning into a bird. She weighed less than ninety pounds and her arms were so thin that they looked like two broken wings beneath the hospital bed sheets. Having been diagnosed with Chagas decades before, my auntie had already made a desperate trip to South America to see an expert, but that doctor concluded that she didn’t have the disease, despite her symptoms and that earlier diagnosis. We didn’t know what to think.
Scouring articles online, the only Chagas expert I found in the US was Dr. Meymandi. I phoned her clinic at Olive View to ask how long antibodies to this particular parasite lasted in the body—one way of knowing if my auntie had Chagas or not. Her staff told me that the antibodies would still be present, but before we could do anything else, my auntie died. Her heart stopped. My sister collected donations from friends and coworkers and asked me where to send the money. Olive View, I said. They had taken my call when there had been no one else to contact.
Every infectious disease has at least two stories. There’s the cuento of the body, of how it unfolds: a bug, a beso, a diagnosis that has no cure. Then there is the second story, the one of empathy, of how people who have not themselves been affected begin to understand that a disease is their story, too. That’s why I was perched on a chair in Dr. Meymandi’s office. She had made the unusual decision to take on a parasite that has been quietly killing women and men and children—most of them very poor—for at least a hundred years. I wanted to know what her clinic might suggest about who we choose to take care of and why.
Windowless but bright, Dr. Meymandi’s office had a standard L-shaped desk and a short bookcase against the back wall that held copies of the Mayo Clinic Cardiology Review and a hefty volume whose spine simply read The Heart. Gifts from patients crowded the top of the bookcase: a doll in a white lab coat, a snow globe. It did not look like the kind of place where a kissing bug from Latin America might be crawling around, but Dr. Meymandi said she had the insects on-hand. “Have you seen the bugs?” she asked.
When we came near, the insects scurried to the top of the lid, expecting their usual meal: the blood of small mammals.
I had, in fact, seen them at a research institute in Bogotá, where I had interviewed a microbiologist for a story on Chagas and then visited the institute’s colony of kissing bugs. The temperature-controlled room there had been balmy, outfitted with a tall wooden bookcase stocked with glass jars whose lids were apparently made of cheese cloth. There are about 140 species of the six-legged kissing bugs, and each of these jars had one or two species crawling inside. When we came near, the insects scurried to the top of the lid, expecting their usual meal: the blood of small mammals.
At Olive View, Dr. Meymandi reached into a cabinet under her desk, pulled out a flat box about five inches long and handed it to me. “These are the different stages,” she said. Below a thick plastic cover lay specimens of Triatoma infestans. The eggs were clustered like pearls; beside them were five dead kissing bugs, each representing a stage of the insect’s life. In the first stage, this particular kissing bug looks like an amber star, its legs and antenna so thin they could be tiny rays of light projected out from the body. In its adult form, the insect is about the size of a dime. It’s belly has elongated and flattened. Its head has turned into the shape of a cone, giving them their other apodo, or nickname: conenose insects. The top of the abdomen has grown stripes at the edges, horizontal and golden. Infected, the insect would be carrying Trypanosoma cruzi, a parasite that resembles a tiny purple eel when photographed from a slide of human blood.
Dr. Meymandi had not ventured outside the Chagas clinic to collect any kissing bugs. She hadn’t needed to: people had brought them to her. Since the kissing bugs in North America don’t seem to easily transmit the parasite to humans, she didn’t expect that they would be infected, but they tested positive for T. cruzi. “That was freaky,” she said, leaning back in her chair.
I asked her where the specimens had been caught.
“New Hall,” she said.
“Where’s New Hall?”
“Five miles north of us,” she said. She named the two other places in Los Angeles County where people have plucked the kissing bug: Studio City and Encino. “We’ve gotten bugs from all over. It’s here. I mean, it’s here in the US.”
While these insects in Los Angeles County are, like their Latin American cousins, carrying the parasite T. cruzi, Dr. Meymandi pointed out one significant, if crude, difference between them. In Latin America, the kissing bugs usually bite a person and then quickly defecate. The parasite, nestled in the insect’s feces, slips into the bite wound and into the person’s blood stream. In the US, the insects behave differently. After biting, they simply walk away. “They’re better mannered.”
At least, most of the time. Dr. Meymandi has had several patients who were, in all likelihood, infected in the US. And in Texas, epidemiologists at Baylor College of Medicine have identified five people they suspect were infected while hunting or camping in rural areas of the state. The rise of “home-grown” Chagas patients isn’t due to any changes related to the insects or the disease. It’s much simpler: More health officials are now paying attention. Four states have made Chagas a reportable disease, and blood banks are now screening people for Chagas the first time they donate blood.
As an infectious disease, Chagas falls under the purview of specialists who focus on parasites and bug feces—and so in a better situation, Dr. Meymandi and I would have never met. A primary care doctor would be able to spot the possibility that a patient might have Chagas, send them to a lab to be screened, and refer them to an infectious disease specialist. But because most doctors in the US are not trained to identify the kissing bug disease, that doesn’t usually happen. Chagas is still considered to be a tropical illness that belongs to Latin America, a malady that is found there not here, so that those very words—alla, aquí—stop being ways to refer to places that loved you too much, and become instead a diagnostic tool for a disease so vicious it leaves scars on your heart.
Migration, of course, has shifted in the last thirty years, and Chagas patients are increasingly showing up in Spain, Italy, and even Japan, in addition to the US. As a consequence, more cardiologists, primary care physicians, and obstetricians in the so-called developed world are having to think about Chagas. In Spain alone, up to an estimated 1,600 women from Latin America give birth every year while infected with the parasite T. cruzi.
The medical textbooks, however, have not changed—at least not yet—which is how a cardiologist like Dr. Meymandi ends up with a box of kissing bugs in the San Fernando Valley. She sees patients who don’t know anything is wrong until they start having shortness of breath, or worse, their bodies start to puff up like “a balloon,” Dr. Meymandi explained. “You retain water. Your heart’s not pumping effectively. It’s like taking a sink and plugging the drain.”
Holding up an EKG whose patient name had been carefully cut away, Dr. Meymandi pointed to the middle of the four black lines jittering across the grid paper and forming several peaks. “You see this? How it goes up? We call it rabbit ears,” she said. I squinted. As she traced the line with her finger, I began to see him: the conejo, the faceless rabbit, with his two ears on the grid that should only be a map of a person’s heart.
The rabbit ears meant that the right bundle branch of the heart was blocked; the electrical impulses that make the heart pump had slowed. “If you’re in Argentina or Brazil and you have a right bundle branch block, you’re considered to have Chagas until proven otherwise,” Dr. Meymandi said, referring to the two countries in Latin America whose doctors have been studying the kissing bug disease for more than a hundred years.
Most patients with Chagas in the US don’t have a doctor who knows to look for a conejo. Untreated, the kissing bug disease leads to the most miserable kind of heart failure. The parasite will thin the walls of the heart. The corazón will lose the ability to pump efficiently. Dr. Meymandi and her staff will use a diuretic intravenous drip to diminish the amount of fluid in a person’s body. They will put patients on medications to help their hearts contract better. Sometimes, though, the only remedy is a heart transplant. A new corazón requires papers: health insurance papers and the other kind of papeles, the ones that say you are wanted in the US. A number of the women and men who arrive at Olive View don’t have those papers. They are undocumented. They don’t qualify for Medicaid or Obamacare or employer-sponsored health insurance.
They were showing up in the ER with chest pains. They were walking around with heart failure that made no sense.
The Chagas clinic does not turn these patients away. They can’t. Olive View is a county hospital. Their doctors are required by state law to treat the poor, and they have been doing so since the hospital first opened, when its patients were battling the white plague, as tuberculosis was then called. Today, Olive View is a public safety hospital supported, in part, by federal funds that are slated to be cut in a few years. It’s the hospital where you show up if you are sick and broke or don’t have papeles. About 66 percent of the patients are from Latin America, and before Obamacare, two-thirds of the patients here didn’t have health insurance. That the Chagas clinic was able to start at Olive View was because the patients were from Latin America. They were showing up in the ER with chest pains. They were walking around with heart failure that made no sense.
Many hospitals across the country, however, have patients like the ones at Olive View, and they do not screen them for Chagas. So, poverty and patient population alone do not explain what Dr. Meymandi has done here. In fact, when a nurse from from her clinic talked to a local politician’s staff to raise awareness about the disease, the staffer listened, then said: “What you got is a Latino problem.”
The political staffer may care about elections, not people’s actual or figurative hearts, but she wasn’t alone. Her words echo what lawmakers and ordinary people said in the summer of 2014 when they saw children on the nightly news crossing the US-Mexico border. Congressman Phil Gingrey wrote to the CDC, asking officials to assess the public health risk that the children posed, and in a town near San Diego, residents turned away buses filled with migrant children. One woman in hot pink shorts held a sign that read: “Save our children from diseases.”
It would be easy to dismiss people as racist for conflating the color of a child’s face with a disease. Easy to call them callous for wanting to turn away a child who might be sick. But these people were asking a question that comes up every time there’s an outbreak of an infectious disease like Ebola or avian flu or Zika: is it our problem?
Dr. Meymandi began screening patients for the kissing bug disease around 2001, at the suggestion of Dr. Glenn Mathisen, the head of infectious diseases at Olive View. What she found surprised her. Out of the 100 Latin American patients she tested from the heart failure clinic, about 5 percent of them had the kissing bug disease. At that point, what Dr. Meymandi knew was that very little could be done. There were two medications for Chagas, and they were only effective if a patient had recently contracted the parasite. In the chronic stage, a Chagas patient simply had to make do with a heart that was slowly dying.
Five years later, a doctor in Argentina published a research paper showing that a drug—benznidazole—could perhaps help patients who had Chagas but had not yet show signs of heart failure. Testing her Latin American patients in the heart failure clinic again, Dr. Meymandi and her team found a dramatic increase in Chagas: almost three times more patients now had the kissing bug disease. But the paper from Argentina got Dr. Meymandi thinking: She didn’t have to wait for people to get sick. She could start treating women and men who felt healthy yet still tested positive for the parasite that leads to Chagas disease.
With a group of volunteer nurses, Dr. Meymandi joined the health fairs at local churches. Her staff created a questionnaire, informing immigrants about Chagas disease and asking them about their lives in Latin America: Had they seen kissing bugs? Did their homes have thatched roofs, the kind the bugs lived in? Her team offered to screen them for Chagas, and since Dr. Meymandi didn’t have the ability to run the multiple tests at Olive View, she asked the CDC to do it. The agency agreed. By the time I visited the clinic in the fall of 2014, Dr. Meymandi and her colleagues in the Chagas clinic had screened more than four thousand people for the disease. Their conclusion? About one in every hundred Latin American immigrants in the county of Los Angeles has the kissing bug disease. She and her staff also conducted small studies showing that compared to other heart failure patients, women and men with Chagas disease are four times more likely to die.
In 2013, doctors in New York City confirmed what Dr. Meymandi had discovered: 13 percent of the Latin American patients with heart failure at Mount Sinai Medical Center and Elmhurst Hospital actually have Chagas disease. And the American Red Cross has found a startling statistic: New blood donors in the United States are as likely to have Chagas as they are to have HIV. (Though in both cases the rate—about 1 in 35,000 donors—is reasonably low, and far less than in the general population. The virus leading to AIDS is also readily transmitted between people while the parasite causing Chagas is not.)
Sooner or later, conversations about public health arrive at the proverbial glass. Is it half empty or half full? It is half full because in 2007, when the American Red Cross began testing all new donors across the country for Chagas, Dr. Meymandi was starting the clinic at Olive View, giving the Red Cross in Los Angeles a local place to send patients. The glass is half empty because, according to Dr. Ross Herron, the Red Cross’s chief medical officer for the West division, when his staff recommended Dr. Meymandi’s clinic to donors who tested positive, they didn’t go, at least not at the rates he had hoped. “A lot of it is the fact that they feel well,” he told me by phone. “They have a chronic illness that may cause problems down the line, but they don’t feel sick now.”
The glass is half empty because the Red Cross finds the kissing bug disease among teenagers when they donate blood at local drives. The glass is half full because when a girl in Kansas donates blood now and turns up positive for Chagas disease, that child’s mother has someone to call.
Dr. Meymandi’s office is the headquarters for the country’s only Chagas clinic, but sometimes I thought of it as the room with the dead bugs and the rabbit ears and the prophecies.
Sitting at her desk, Dr. Meymandi explained how a cardiologist with a Chagas patient can read the future. First, she has the patient undergo an EKG. Then, she has them wear a heart monitor for 24 hours. Finally, she conducts a cardiac MRI and looks for any scar formations in the heart muscle—visual evidence of the parasite. “I can predict who is going to have cardiac arrest from Chagas,” Dr. Meymandi said. “Scar formation in the heart is what triggers the ventricular arrhythmias that kill you.”
Dr. Meymandi pulled out a model of a heart. The lower part, the ventricles, were painted a candy red and had a hinge on the side. She wedged her fingers along the front of the model and pried open a panel to show the inside of the right ventricle, an empty red chamber. When a person suffers a ventricular arrhythmia, this chamber quivers. That is the word the National Institutes of Health uses on its website: quiver. The electrical signals grow disorganized and “make the ventricles quiver instead of pump normally.” This prevents the ventricles from sending oxygenated blood to your lungs and the rest of your body, and so you can die within minutes. This is what the parasite T. cruzi does, then.
The defibrillator, which looks like a giant silver coin, fit in Dr. Meymandi’s palm.
But before the parasite has a chance to stop a person’s heart, Dr. Meymandi tries to do it. She orders an electrophysiology study, which looks at how close a patient is to being dead. “It’s an invasive procedure,” she said. “We go up into the heart and try to provoke the heart to elicit an arrhythmia.” If they are successful—if their hands become not merely those of a prophet but of a god—and the patient has health insurance, then a defibrillator is considered.
The defibrillator, which looks like a giant silver coin, fit in Dr. Meymandi’s palm. There was something about the way she cupped the device to her chest, though, that made me think of seashells and shorelines, of objects that are found and those that are empty and people who never make it back to us.
Still holding the heart model, Dr. Meymandi explained that a pocket is made under the chest wall and the defibrillator is wired to the heart. When the lower chambers of the heart quiver, the device recognizes this as a cry for help, and it shocks the heart back from near-death.
Defibrillators are not standard treatment for patients with the kissing bug disease. They’re expensive. Each device can cost fifty thousand dollars and Chagas patients often don’t have the insurance to pay for them. Staring at the device in Dr. Meymandi’s hands, I wondered if it could actually outwit a parasite that has been found in 9,000-year-old mummies from South America, or if the combination of profit-driven medicine and social inequities would conspire to make that impossible.
In another life, Valentina Carrillo might have danced with a ballet company. I saw it in the shoes she wore (black ballet flats), her blouse (an oversized pink shirt with a giant heart in glitter at the center), the way her hair curled around her face, the romantic connotations of her name. In this life, however, Valentina is a 58-year-old evangelical Christian, already a matriarch with three generations under her watch. “I’m waiting on a great grandchild,” she said in the cardiology exam room at Olive View, no-nonsense in her pleasure at her large brood.
For Valentina, the heart palpitations came, at first, like an infrequent knock at the door. “It was every once in a while. I never imagined what it could be,” she said. She had never heard of Chagas. Then the knocking in her chest started coming every day. Then it stopped. Then it started back up again. Sometimes, the knocking began even when she was asleep. She fluttered her hands over her chest as she described how her heart would turn into a pillow that threatened to smother her. “It would get big,” she said about her heart. “I’d get fatigued, like a depression. I just wanted to have my eyes closed. I’d feel débil.”
Valentina used to work at a hotel. Now, she can’t lift a load of laundry without her heart feeling like a balloon in her ribcage. The first medication the clinic administered, nifurtimox, made her feel weak and disoriented. So Dr. Meymandi switched her to benznidazole—shortly before the CDC stopped sending the drug to the clinic at Olive View, citing diminishing supplies from the Brazilian company that produces it. Few companies have been willing to supply either medication given the low profits, which means that Dr. Meymandi and her patients sometimes have to wait for weeks or months at a time. So far, the FDA has refused to approve either medication for distribution, citing unmet safety standards.
That day at Olive View, Valentina and I talked about kissing bugs and lives that do not turn out the way we expect. The fluorescent lights in the exam room glared overhead and a nurse tapped away at a computer in the corner of the room. Valentina said she still goes to church every Wednesday and Sunday. She believes in God and in the Chagas clinic. “They have not left me alone in this,” she said.
The word “neglect” comes from the Latin verb “neglegere” meaning “to not choose.”
They have not left me alone in this. The World Health Organization identifies Chagas as a “neglected tropical disease,” a term that reveals as much as it obscures. After all, we punish parents who neglect children, and both children and animals can die of neglect. But the term also hides the fact that people make decisions. Medical schools don’t routinely teach that Chagas is a disease their students might encounter in the US. The FDA has refused to approve the medications used to treat Chagas, leaving doctors and patients here to scramble through bureaucratic channels to get it. Ironically, defining Chagas as a neglected disease has gradually brought it more attention from the global health community: in 2013, the WHO classified the pediatric dosage of benznidazole as an essential medicine for children.
The word “neglect” comes from the Latin verb “neglegere” meaning “to not choose.” In some ways, it is easy to not choose Chagas patients. Unlike HIV or Ebola, the disease is not easy to transmit from one person to the next and it doesn’t come with horrific physical symptoms. Few of the people who are infected are ever able to see a doctor, and so people die of Chagas without the rest of the world bearing witness to their chronic suffering—unlike the widely-photographed babies born with microcephaly after exposure to the Zika virus. In a way, then, we actually prefer infectious diseases to act like Chagas—to stay contained and to afflict, mainly, the poor, the “other.”
It was a sweltering Sunday morning in Reseda, California, and the parking lot behind St. Catherine of Sienna Catholic Church bulged with cars. People late for mass drove out the back of the lot and parked behind the strip mall with its Goodwill, Susie’s Deals, and a ninety-nine-cent store. When mass let out, women in thick heels and men in short-sleeved button-down shirts streamed out of the church and plodded across the parking lot to the parish hall, where a banner announced a health fair sponsored by Providence Health Systems and Parish Nurse Partnerships.
The hall was large enough for a middle school dance, with a simple stage at one end and dozens of folding chairs. Volunteers and nurses in aqua-colored scrubs had set up tables along the periphery of the hall and posted signs designating each table with the corresponding medical condition: blood pressure at table 2, BMI at 3, Chagas at 5. Parishioners arrived alone, in pairs and with children, shuffling from one table to the next, papers in hand, chattering in Spanish.
That day, the kissing bug table was covered in blue cloth and staffed by two volunteers from the Chagas clinic at Olive View. They distributed an information sheet on Chagas disease that started with nicknames, because the insects are rarely known by their scientific nomenclature, here or in Latin America. Instead, the bugs are called chinches, vinchucas and barberiros, and sometimes just plain bicho, a word that in some countries can also refer to a man’s genitals.
Salvador Guerrero grew up in Zacateca, Mexico, and at forty-seven, he has the wide chest and friendly face of a man who feels in control of his life. “My cholesterol’s normal,” he said in the parish hall, in a tone that implied it could not have been otherwise. He wore jeans and an ironed T-shirt, and he was pleased to say that he was not worried about Chagas, because in Mexico, there are two kinds of bichos—the ones that live inside your house and the ones outside. The outdoor bugs, “those bring disease,” he explained. “The ones inside the house—those don’t hurt you.” I nodded. Because the parasite causing Chagas can lie dormant in the body for decades, families often don’t connect their heart problems with the insects living in the thatched roofs and mud walls of their homes.
Dr. Meymandi was at the health fair in khaki cargo shorts and a t-shirt. As the crowd thinned in the morning while mass was taking place, we talked about her childhood spent as a latchkey kid in a one-bedroom apartment in Washington, DC. Her mother, an Iranian immigrant, had worked a day job and attended beauty school at night, leaving the young daughter to cook her own meals and dream of having a big family one day. Dr. Meymandi showed me the insulin pump on the waistband of her cargo shorts—she’d been diagnosed with diabetes as a teenager—and shrugged off the difficulties of her childhood. “I was raised to be okay,” she said.
I nodded, knowing it was a necessary lie, a mentira I had also taught myself, a lie I had heard over the years from so many women of color. In a world where race and economics still too often determine who dies and who lives, it can feel like a victory or an obligation to declare that we are okay. That day with Dr. Meymandi I began to wonder if that insistence—I was raised to be okay—also made her work possible.
Standing there in the parish hall, watching moms from Central America and Mexico line up for the Chagas screening, I thought of my own mother, who, for most of her life, went to health fairs like these to have her cholesterol and even her eyesight checked, since her factory jobs never offered health insurance. Because my auntie had been diagnosed with Chagas, my mother—her sister—should have been tested, too. She never was. Here in front of me, the story was beginning to change.
St. Catherine’s had air conditioning, so when the temperature reached 106, I snuck into the 1:30 mass en Español, which was already under way. In a nook of the church, Jesus lay face up on top of a casket surrounded by flowers. Like so many representations of him, he had pale skin, shoulder-length hair, and the bloodied crown, but the position—on his back, alone—surprised me.
Except for Michelangelo’s Pietà, where Jesus rests in his mother’s arms after the crucifixion, most works of art depict Jesus in an upright posture. Here, however, Jesus was face up and solito. About five feet tall, he had apparently been carved from a sturdy wood, his knees drawn up as if he were still nailed to the cross. His body bore the maroon marks of the beatings, and his face—full of agony, his eyes wide open—reminded me of the last hours of my auntie’s life in a New Jersey hospital, when her heart was failing her. Her eyes refused to close. She stared at the empty ceiling with an oxygen tube down her throat. When she heard my voice, she squeezed my hand. Hours later, her heart stopped and refused to return to us.
I sat on the hard pew in front of the bruised Jesus while the parishioners around me began the call and response in Spanish with the priest. Their voices rose in unison, narrating the story I was raised on, through twelve years of Catholic school: the cuento of death and resurrection, of a god who always chooses us.
The health screening in the parish hall embodied a call and response too—twinned stories of poverty’s impact on disease, and also of people like Dr. Meymandi who step forward to help. Her clinic suggests that our answer to infectious diseases need not be fear or denial, or a looking away. That instead, we can look in the same direction, together, each of us belonging to one single, imperfect story.
Daisy Hernández is the author of A Cup of Water Under My Bed: A Memoir and coeditor of Colonize This!: Young Women of Color on Today’s Feminism. The former editor of ColorLines magazine, she has written for The Atlantic, The New York Times, and NPR’s All Things Considered and CodeSwitch, and her essays have appeared in the Bellingham Review, Dogwood, Fourth Genre, Gulf Coast, Hunger Mountain, and Tricycle. She teaches creative writing at Miami University in Ohio. To see more of her work, visit www.daisyhernandez.com.
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