The days took the shape of weeks, but the mourning lost all its edges and became a suffocating blanket. In Miami, where my parents had moved after my sister and I left home and the factories left Jersey for other places, the surgeon explained that my father would slowly recover the use of his right arm and leg and, later, his full vocabulary. The stroke had affected the part of his brain that connected words with objects, so in the rehab center, where he spent several weeks, Papi insisted one afternoon, “Give me the pen!” I dug one out of my bag and handed it to him. He barked, “What are you giving me this for?”
“You said you wanted a pen.”
“Why would I want this? I don’t want this. Give me the pen!”
My mother, patient as always, asked, “What do you want to do with the pen?”
“I’m going to change the channel!” he cried and slumped back in bed.
My mother handed him the remote control, and this happened several times with other objects: the fork, the slippers, the reading glasses. No matter how hard Papi tried, he could not correctly match his words to the intended object.
The same was happening to me. I could not point at a situation and call it grief. Every object I looked at—the plastic cups at the nurses’ station, the folded bedsheets in the rehab center, the black flip-flops on my feet—every object could have been named grief.
I told myself not to be ridiculous. I was not grieving my dead auntie. I couldn’t be—our relationship had been hard. I had nothing to mourn, and I did exactly what Tía Dora would have wanted me to do at that point, what she had done after Tío Papeles died: I threw myself into work. I finished a memoir and applied for grants. I left my apartment and friends in California, moved to South Florida, and started a master’s program. I wrote a novel. I taught creative writing. And I started drafting a short story about the kissing bug disease.
…
When summer arrived in South Florida in 2013, three years after Tía Dora’s death, I had managed my fear of bichos enough to read voraciously about kissing bugs. I learned that the baby insects are called nymphs, have five larval stages, and need to suck on blood to start molting. Although there are 140 species of these insects, only five are really responsible for transmitting T. cruzi. The faster a kissing bug defecates after biting, the more vulnerable the person might be since the parasite passes through the insect’s feces. A friend in Miami cocked her head and joked, “It’s like a crazy girlfriend. She breaks your heart, then shits on you.”
It rained to extremes that summer. I scoured online science articles on kissing bugs, as my cat and I monitored the rainfall from the windowsill of our bedroom. One day, I clicked on a link and practically jumped from my chair when an image burst onto my screen of kissing bugs—dead and preserved and arranged in a line like foot soldiers. They reminded me of giant cockroaches, with wings and legs so long they looked like they could jump, which they can’t, and their eyes—the insects have enormous eyes and petite heads. I shivered, then squinted at the photograph. Some of the kissing bugs had orange stripes at the edges of their backs, as if there were a god who had realized her mistake in making these six-legged creatures and at the last moment had thought to redeem them with pumpkin-striped skirts.
When it stopped raining, I opened the door to go for a walk and found a huge dead cockroach on the threshold, its rigid body flipped so the feet stabbed the air. I yelped and slammed the door shut. I told myself that it was not a kissing bug, only a cucaracha, and it was dead. I paced the kitchen, hyperventilating and remembering how, when I first looked for an apartment in Miami, one landlord had said, “They’re palmetto bugs,” as if I didn’t know a cockroach when I saw one.
In the bedroom, my cat, Zami, napped on the windowsill. She did not kill rodents or roaches. A rescued Persian mix, she knew better than to associate with anything filthy enough to have six legs and antennae. She opened her eyes briefly to see me standing there, then stretched and curled into a tighter ball.
Finally, I gathered courage. The apartment had two doors to the street. I opened the second door in the living room slowly, saw the threshold free of horrors, and sneaked out of the apartment. Tía Dora would have done the same. If she were with me, she would have cried, “¡Asco!” about the dead roach and inched close behind me to tiptoe out. In the park near my apartment, the one with the gazebo, she would have slipped her arm into mine and walked with me as if she were a young royal on a stroll in the village square. I would have confessed: “I don’t know why I am grieving you. You were awful to me, and yet here I am crying in public.”
…
I convinced myself that my research into the kissing bug disease did not have much to do with Tía Dora. I had grown up in the shadow of a disease about which I knew little. Now I was reading that one study put the global cost of the kissing bug disease as higher than cervical cancer in terms of health care expenses and years of life lost. What else didn’t I know?
The more I read, the more I began to appreciate the places where disease and politics intersect. Pathogens don’t care about bank accounts, national boundaries, or tax returns, and yet government policies about race, class, and citizenship determine who gets to see a doctor and who gets treatment—in the simplest and scariest terms, who gets to live or die. If Tía Dora had arrived in the United States today rather than in 1980, she would have had to wait five years and needed a green card to qualify for Medicaid in some states. In all likelihood, the only reason the health insurance from her teaching job covered her later surgeries and hospitalizations was that the insurance agents did not know Tía Dora had a preexisting condition. It was hard to imagine any of them had heard of the kissing bug disease.
Tía Dora was actually the only woman in our family who had health insurance. My mother and Auntie Biblia worked in textile factories. Radio Auntie was a home health aide in Manhattan. When the summer arrived, my mother and tías took a public bus in Jersey to a feria de salud in West New York. The health fairs were held in church parking lots under bright blue canopies. Or in public parks. The white coats spoke Spanish and arranged the tables so that it was clear where my mother and Auntie Biblia and Radio Auntie were to go for blood pressure, azucar, and cholesterol screenings. Sometimes a woman offered a cooking lesson: how to make a fruit salad, how to stuff a red bell pepper. Mami snacked on crackers and watched, delighted at the woman’s ease with the knife and the cutting board. Volunteers handed out plastic bags with information about how to keep bad cholesterol down.
The other way women in our immigrant neighborhood received health care was by word of mouth. That was how my mother learned that a clinic in Harlem gave women annual mammograms without charge, and she went every year until she reached the age to qualify for Medicare.
I did not have health insurance growing up. I did not have health insurance when I was eighteen and tripped in front of a store while running. My face smashed into the uneven asphalt, the skin on my chin tearing so that blood poured down my neck and my body shook, and my boyfriend at the time winced when he saw my face: a triangle of flesh exposed on my chin. Back home in our kitchen, my mother didn’t know what to say. Who had the money for stitches? For an emergency room trip? I wasn’t dying.
When I read articles labeling the kissing bug disease a “disease of poverty” and noting that about three hundred thousand people in the United States were infected, I wondered: Who are these families? Where are their stories? And also: are these families like mine? Before the Affordable Care Act passed in 2010, the least likely group to be insured were Latinas and Latinos, but having the kissing bug disease requires constant contact with doctors.
It turned out that Tía Dora was also part of a migratory shift when it came to the kissing bug disease. Growing economic inequities in South America and the brutal civil wars in Central America had pushed people to move to Spain, Italy, Japan, the United States, and many other countries. These were people who, like Tía Dora, had contracted T. cruzi from kissing bugs in their home countries. Now the
se women and men were waking up in European and American and Asian cities with hearts that felt too big for their chests, and doctors strained to understand why people in their forties had heart failure for no apparent reason.
…
Almost a year after I started reading about kissing bugs, Auntie Biblia phoned me to say she was making her annual trip to Colombia for the anniversary of Tía Dora’s death. A mass had been arranged in Bogotá.
“I want to go with you,” I declared.
I did not tell Auntie Biblia about a professor I wanted to see in Bogotá. Felipe Guhl had an office at the most elite university in Colombia, and I had been tracking his work in scientific journals for months. While I was only beginning to learn details about the kissing bug disease, I had worked as a journalist for more than a decade. I knew people would talk to me, so I emailed the professor with links to articles I had published, described myself as a freelance reporter, and asked for an interview. It helped that he was very kind and that I had written for the New York Times in my twenties. He emailed back that, yes, he would meet with me at his office.
IN SEARCH OF THE KISSING BUG
INSECTARIO
The day of my interview, the sky in Bogotá clouded early and stayed that way. I skipped the pink shawl and packed my black rain jacket. I was so nervous about my Spanish-speaking skills that I didn’t look up as I walked across the campus of the University of Los Andes, which a relative of mine had referred to as the Harvard of Colombia. I moved forward, the campus map in hand, the security guard’s directions on repeat in my mind. A minute later, I looked up.
The campus was tucked at the base of the mountain. Overhead, a sheet of brilliant green measuring more than ten thousand feet careened toward the sky. I turned around. I had climbed far enough that at my feet lay Bogotá with its skyscrapers and rapid bus system, its bundles of trees and the flat rooftops of bookshops and bakeries.
Later, I realized I was romanticizing the side of a mountain and the manicured grounds of an elite institution, but in that moment I did experience awe. This was a city whose geography did not permit erasure. I remembered my abuela, my mother’s mother, who had a wide, wrinkled face, and how every time I looked at her I saw the mountain behind her. They became a single entity: my abuela-mountain. The days I spent with her began and ended with her wide skirts, the sensation in my toes of how tiny I was and how I was held by this woman, this mountain, this woman-mountain.
Three students strolled past me in sweaters. A fourth hurried. More of them sat on the green in tight knots of three and four, complaining about schedules and phone calls they had not received and people they knew. The building waited for me up ahead: the Center for Research in Microbiology and Tropical Parasitology.
…
I had not expected to find a mask of the Laughing Buddha in the professor’s office, but there he was on the wall—past the jam-packed bookshelves, the tangle of conference badges hanging from a doorknob, and the L-shaped desk with its a wide-screen MacBook. The Laughing Buddha shared the space with a few masks that appeared African and Indonesian in origin. The professor had actually collected two hundred masks from more than thirty countries.
Professor Felipe Guhl reminded me of my tíos: salt-and-pepper hair, warm eyes, heavy at the waist, and smartly dressed in a wool sweater. A biologist, he had started studying the kissing bug disease in the seventies. Over the decades, he had, along with colleagues, mapped the places where fifteen species of kissing bugs make their homes in Colombia. He had found that houses in close proximity to the booming palm oil industry were particularly vulnerable to kissing bugs (the female insects stick their eggs to the palm leaves). When Andean countries teamed up in the nineties to battle the kissing bug, he had been at the helm of the effort, and when we met in his office, he was at work with colleagues in several countries on the first double-blind study of the drug benznidazole, which can often cure people when they initially contract T. cruzi. The study focused on the drug’s effect on people after that acute stage, when the parasite can lie dormant in the body for decades.
Professor Guhl leaned back in his office chair and reminded me that the kissing bug disease is a zoonotic disease—it jumps from wildlife to humans, like Lyme disease and the West Nile virus. More than 60 percent of emerging infectious diseases worldwide are zoonotic. And for that reason, the kissing bug disease cannot be wiped out. “To eradicate it would mean that you’d have to end all wildlife, right? And that is impossible,” he said.
Although only five kissing bug species are considered dangerous in Latin America for their ability to transmit T. cruzi, there are more than a hundred species that could do the work, and this is another reason the disease is impossible to eradicate. “It’s like a baseball game,” Professor Guhl said. If pesticides eliminate one species of these insects, “there are other players on the bench.” Some kissing bugs are seen only in the wild, he said, while others have become so habituated to living with people over time that they are usually only found in rural homes. I remembered that in the science literature, these are called “domestic” kissing bugs.
I must have looked crestfallen because Professor Guhl said, “You have to be clear about one point: it’s one thing that a person is infected, and it’s another thing that the person is sick.”
Most people infected with T. cruzi do not get sick. They carry on with normal lives and die of other causes. But about 20 to 30 percent of those infected end up with cardiac problems, and fewer, like Tía Dora, with gastrointestinal issues. Only a small percentage of those who are sick actually die from the disease.
“Why and who develops symptoms is still a big question,” Professor Guhl said, adding, “The parasite is very successful. It gets into the cells of the heart tissue. It stays there some time; then the intracellular forms get out and invade other new cells. But again all that depends on a lot of factors about which we still have a very big question mark.”
Professor Guhl was eager to tell me that T. cruzi is not a single entity. There are actually six genetic groups, and, he explained, “each one of those trypanosomes has a distinct biological behavior.”
Six types of this parasite?
“The frequency of Trypanosoma cruzi I is much greater” here in Colombia, he said. “So the pathology is also distinct.” This parasite type causes heart damage, while another type, called T. cruzi II, is more likely to affect a person’s gastrointestinal system.
I began to wonder if maybe my auntie didn’t have this disease. Maybe she had something that looked like the kissing bug disease. Tía Dora’s medical record was beginning to feel like that of Charles Darwin: sick her whole life and no one had a definitive answer.
Glancing at the clock, I realized I needed to ask Professor Guhl about the mummies.
…
The story of the kissing bug disease actually starts in one of the driest places on earth: the Atacama Desert. NASA compares this desert to the surface of Mars—it’s hard to imagine life growing there given the rocky landscape, extreme temperatures, and ferocious winds dumping salt that never washes away. Straddling Chile and Peru, the desert spans more than six hundred miles and has no light pollution.
Atacama is where astronomers went to look for the ashes of stars that exploded after the Big Bang. It’s where scientists traveled with a telescope to get the first picture of a black hole. Atacama is also the place where military men tossed the bodies of murdered activists during Chile’s brutal dictatorship in the seventies and eighties. The desert held the bodies until the dictatorship ended and old women arrived, with small shovels, searching the desert for their sons and husbands, daughters and sisters.
At Atacama, Professor Guhl and an international team of researchers found mummies, one dating back nine thousand years, riddled with T. cruzi. In other words, the kissing bug disease existed in South America before Christopher Columbus arrived in the Carribbean. Testing close to three hundred mummies, Professor Guhl and his colleagues found that about 41 percent of them
were infected with T. cruzi.
The parasite is only found in the Americas, where evidence of humans dates back fifteen thousand years. According to Professor Guhl, the mummies suggest that the parasite’s “contact with humans in evolutionary terms is very recent.” For the parasite, he added, “Humans are new. The parasite is trying to get the best deal, but it kills people, which, for him as a parasite, is not convenient.”
I nodded. It was the first time I had heard someone talk about the parasite’s point of view. It was the first time I had considered that a parasite had a point of view and a desire: it, too, wanted to stay alive.
…
Professor Guhl and I talked for an hour in his office, maybe longer. I could feel Tía Dora at my back, so I kept thanking him before asking another question. He teased that I should get out into the country and see the kissing bugs for myself. I wasn’t quite sure how to tell an expert on triatomine insects that I thought anything with six legs was gross. I actually couldn’t think of a word in Spanish for gross, or at least not one that I could use in a professional context.
Professor Guhl told me he had a colony of kissing bugs on campus for research purposes. I considered the opportunity. I was never going to travel into the wild to trap any insect. “Can I see the colony?” I asked.
Of course, he said, and arranged for one of his graduate students to give me a tour.
…
In Spanish, the room at the University of Los Andes that houses Professor Guhl’s kissing bugs is called an insectario. From the outside, it looked like an ordinary room on campus with a locked door. I carried my notebook and swallowed my fear. A graduate student, taller than me and lanky, came with the keys.
The Kissing Bug Page 6
