Someone said, “No.” Maybe she said it. Maybe her husband.
The officials pulled out a display case filled with dead kissing bugs. Did the insects look familiar?
Again, someone said, “No.”
A month later, the mother spoke up. She had seen bug bites on her baby before the fever had started. She tested negative for the kissing bug disease. So did her husband, her toddler, and her in-laws. Even the rabbit out back was screened. She, too, turned up negative.
…
Candace did not keep quiet about having the kissing bug disease. By the time we met, she had become a self-appointed spokesperson for those infected. She spoke to newspaper reporters and testified at the FDA as the agency considered approving benznidazole.
“Why did you start talking about it?” I asked.
“I smartened up,” she said and nodded toward her friend Debbie, the nurse, across the kitchen’s island counter. “Me and Debbie, we talked about it, and I just finally said, ’We need to tell people about this.’”
The two women started with the auxiliary at their local hospital, which Debbie oversaw at the time. The group raises money for scholarships and runs the hospital’s gift shop. Candace joined the group because, she said with a laugh, “Debbie kept volunteering me.” One week at the auxiliary’s meeting, Candace shared her story about the kissing bug disease. Most of the volunteers were well into their sixties.
“How did people react?” I asked.
“Scared,” Candace said. They wanted to know what the kissing bugs looked like, and when Candace pulled up photographs on her cell phone, the women cried, “We got those kinds of bugs!”
Candace had never seen the insect that bit her, and she had no memory of a bug bite. No swelling. No fever or rash. But she suspected she was bitten at her parents’ house, the new one they had built a few years back. She told me her mother had died of leukemia but her father still lived in the house. I asked if it was close by. She said the house was down the road about seven miles.
…
Candace called her father Daddy, and his house was what I had expected when I thought of kissing bugs—not because it was made completely of wood with a tin roof and looked like the kind of rustic Texas house photographed for HGTV, but rather because the house sat in a patch of undeveloped land. He and Candace’s mother had had the land cleared just enough for the house, a cheery stretch of yard, and space in back for the chickens and goats. They had built their home in kissing bug country.
It had been almost two years since the death of Candace’s mother, but the front porch still looked the way she had left it, with an heirloom rocking chair and a fine old wooden stove. “It’s for decoration,” Candace’s father told me.
He was a tall man in his midseventies, wearing overalls, and was justifiably proud of all the work he had put into the house. The long picnic table in the kitchen? Made of pine. The bathroom walls? Pine. The master bedroom? Ash wood, but the closet, he pointed out, was constructed from cedar he had brought all the way from Jasper County.
I walked cautiously through the house, then reminded myself that I had nothing to fear. It was the middle of the afternoon, which meant that if a kissing bug was still here, it would be hiding for several more hours. They hate the sun that much.
Candace led me to the guest bedroom, a charming room made of pine with a wide, full-size bed and a vanity table. This was her room when she visited her parents and where she thought the kissing bug must have bitten her. She had come to this conclusion because after she was diagnosed, Candace studied photographs of kissing bugs and looked for them. She searched her house and her yard but never found one. Then the day her mother died, she came to the house to get some memorabilia for the wake. Her father said whatever she was looking for was probably upstairs in the walk-in closet.
She found a wicker basket on the closet floor with a pillow in it. She scooped up the pillow and immediately spotted an insect with six legs. “When I seen it, I knew what it was,” she told me. “It was dead. I picked it up.”
She had touched it?
Candace joked and said, “Well, what’s it gonna do? Give me Chagas?”
It was strange to hear her refer to the kissing bug disease as Chagas. I still associated the name so deeply with Tía Dora and with Spanish, but Candace had the disease and so she had learned how to pronounce the name.
She shipped the dead kissing bug to Dr. Hamer at Texas A&M University in College Station, where the professor and her team inspected it for DNA evidence of T. cruzi. The bug Candace sent tested positive.
Her father had not been tested for the disease, but her mother had. The doctors had wanted to rule out the possibility that Candace was infected in utero more than fifty years before. Her mother turned out negative, and standing there in the closet on the second floor of the house, surrounded by pine and ash and cedar, and with the goats and chickens out back, I considered how random this disease could be. Candace’s mother had lived in this house for six years and not been infected. Candace slept over for a few nights here and there and had contracted T. cruzi. Now she needed her heart monitored every year. So far, she was not showing any symptoms.
MAIRA
When a cardiologist in Los Angeles put me in touch with one of her patients, she did not mention Wonder Woman, but I thought of the superhero the morning I showed up at Maira’s house in Southern California. Her straight black hair pooled around her shoulders, and on the inside of her right wrist, she bore a tattoo of swirls—the symbol of the Akan people in Ghana meaning “Except for god, I fear none.” Maira did strike me as fearless. “At six, I was good with a slingshot,” she said, matter-of-fact, remembering her childhood in Central America. Back then, when her grandmother’s boyfriend grew violent, Maira did not think twice about being a girl in a handmade dress without shoes—she grabbed a broom and started beating the man on the head.
Now in her forties, Maira had a well-stocked kitchen in the San Fernando Valley, and the morning I arrived, she was sporting a pink summer dress with a matching blazer and cream-colored sandals with straps curled around her ankles. She kept her husband and two teenage children on task with house chores—the kitchen counters sparkled. She had worked at Universal Studios since she was sixteen. Her first job was with the cleaning staff, and more than twenty years later, she was an executive assistant to several directors at the theme park. Soon she would be working in the president’s office. Every morning, she made sure the directors had their daily schedules printed, and she fielded calls, arranged travel itineraries, and generated reports. She saw these executives as extensions of her own kingdom, or as she told one of them, “When you look bad, I look bad.”
Maira was straightforward and unapologetic. The first time we spoke by phone about her having the kissing bug disease, she said, “You get to the point where you’re like, if they tell you to drink pee, you’ll do it.” She had been diagnosed in Los Angeles County in the late nineties, and for years was asymptomatic. Her doctor procured the drug nifurtimox for her. Maira had hoped the drug would reduce the parasite load in her body. In 2015, however, her cardiologist looked at an MRI of Maira’s chest and saw that the parasite was beginning to eat away at the wall of her heart.
That was why I was here in her spotless kitchen, sipping a cup of her coffee. Maira had agreed to let me tag along for her annual EKG and echocardiogram. We would see if the parasite had damaged her heart any more in the last year.
Maira had an advantage over the parasite: her cardiologist, Sheba Meymandi, had started the first clinic in the United States devoted to the kissing bug disease and had become an internationally recognized expert on the disease in this country. Granted, the clinic, which opened in 2007, was essentially a one-woman operation in a county hospital in the San Fernando Valley, but it was better than most patients with the disease had in this country. It was better than what Tía Dora had experienced.
California has the highest number of people with the kissing bug disease in the U
nited States—close to seventy-one thousand, all of whom are Latin American immigrants. So Maira was one of thousands in the state who had the disease but one of the few who knew it.
…
From the parking lot, the Olive View-UCLA Medical Center reminded me of a Salvador Dalí painting. The hospital, tucked among the sand-colored hills, had reflecting windows so that at first glance it looked as if the dry land and the bright blue skies were painted onto the hospital itself. The signs hinted at surrealism. An arrow for the outpatient clinic pointed left, almost suggesting that we take a walk in the hills.
I did not tell Maira that it pained me to be at Olive View. I had never brought Tía Dora here, not that it would have made any sense since the parasite was attacking her digestive system and the focus at this clinic was cardiac damage. But still. It would have been reassuring to talk to a doctor who knew the disease, who consulted with experts in South America.
While I didn’t bring Tía Dora to Olive View, I did call in the spring of 2010 when she was very sick. I asked an administrator questions about testing for the kissing bug disease, but it wasn’t clear what I should do next, and a month later Tía was dead.
Maira had started coming to the clinic in 2008. She had known for almost ten years that she had the disease—a letter had come after she donated blood—but the first specialist she consulted in the late nineties at another medical clinic did not seem to know very much. “I thought: it can’t be that bad,” she told me. “No one is dying from it.”
She didn’t know that every year an estimated ten thousand people die from the kissing bug disease, most of them in Latin America. One study in Brazil looked at blood samples from more than 8,000 people who donated blood in São Paulo and followed the donors for close to fourteen years. The researchers found that being infected with T. cruzi increased a person’s risk of death by two to three times.
The Center of Excellence for Chagas Disease was part of the hospital’s cardiac unit on the second floor. We arrived early, around nine in the morning, but patients already filled every chair of the modest waiting room. When a patient’s name was called and he got to his feet, Maira turned to me and joked, “You better grab a seat while you can.”
Two receptionists scrambled with ringing telephones and intake forms, and Maira told me that they must be new. She didn’t know either of them and she’d been coming for a decade. She gave her name and birth date.
“I need your ID,” the receptionist said.
Maira pulled out her wallet. “That’s the first time they asked me for ID.”
“I need you to sign consent forms,” the receptionist added, pushing papers over the counter; then she paused. “You have two appointments?”
“I do,” Maira said. “An EKG and echo.”
The receptionist gave her computer screen another look. “Oh, it’s Chagas,” she said, as if the disease were as commonly known as the flu. “When you finish with the echo, come back to register for Chagas.”
It was strange for me to hear a receptionist reference the disease since I had never been in a medical office where the front desk people knew about it. Tía Dora had been the only patient with the disease at her doctor’s office in Jersey. But it made sense. At the time, the Chagas clinic had more than two hundred patients. “Registering for Chagas” meant that Maira was having her blood drawn to check for antibodies to T. cruzi.
Writing an observation in my notebook, I glanced down and saw that Maira’s pedicure was the color of white lilies. It looked like she was carrying ten white lilies on her toes. The pedicure reminded me that she had a primary care doctor in a swanky part of Los Angeles County, but she had to come to Olive View because this county hospital was the only medical institution in the country with a center dedicated to the kissing bug disease. About 66 percent of the hospital’s patients hailed from Latin America, and before the Affordable Care Act became law, two-thirds of the patients at Olive View did not have health insurance. A study published in 2018 looked closely at fifty of Dr. Meymandi’s patients with the kissing bug disease—all immigrants from Latin America—and found that more than 63 percent lived in poverty. Almost 80 percent of these patients with the disease had Medicaid or, because of being undocumented, had no health insurance.
…
Maira did not know when the kissing bug bit her. She figured it must have happened in her home in Central America when she was a child. The house consisted of two rooms constructed from natural materials: mud dried in the sun and tree branches. It would have been easy for a kissing bug to crawl through the walls in the evenings.
Maira slept in the house with her baby sister and their grandmother, her uncles, and the man her abuela loved. It was the late seventies. Maira’s parents had left for the United States when she was a toddler. She thought of her grandmother as her mother, and in the mornings, the old woman yanked Maira’s pin-straight hair into two braids. She tugged so hard that Maira could feel the corners of her eyes pull back. Her hair finished, Maira slipped into a dress her abuela had made and ran with her sister out of the house.
Their lives happened outdoors. The kitchen was outside with the fruit trees, the chickens, and the duck. Behind the house, the black and red beans nestled and multiplied. On laundry days, Maira and her grandmother walked to the river to wash their clothes, and the men took pots to catch crabs.
“I had one doll,” she remembered, laughing. “And that was just because I found a head somewhere.” She found another doll’s body later on and attached it to the first doll’s head.
In the mountains, Maira unleashed her slingshot on lizards and birds. When the coffee harvest came, she followed her abuela toward the fields and spent the day picking the coffee beans. A man paid them ten cents for every bucket of beans.
Some days, especially in the early summer months, the rains arrived and made the mountains shake with mudslides. The tree branches rocked back and forth. Maira listened carefully, and like so many children during the late seventies and early eighties, she learned to monitor the mountains. The civil war had begun.
One day when the mountains trembled but the sky stayed clear, Maira, then eight years old, grabbed her sister, and off they raced into the woods. They dashed behind bushes, squeezed between branches, anywhere that the leaves and twigs might cover their faces, their arms and toes and belly buttons.
The forest hid them, but it could do nothing for the inside of Maira’s ears. From where she and her sister buried themselves, she heard the screams of women and children as the soldiers plucked boys and girls from their homes, dragged the little ones through the mountains to enact the horrors that would one day appear in newspapers: raping the children, selling them to illegal adoption networks, even raising the children as their own.
In 1981, Maira’s parents sent for her and her sister. Maira cried and screamed. She didn’t want to go to Los Angeles. She wanted to stay with her maternal grandmother in the home that she knew. But the archbishop in their country had been murdered while presiding over Mass, and by the end of the year, the military would massacre close to a thousand people in El Mozote—half the dead were children.
After walking and riding in cars, and crossing multiple borders with their paternal grandmother and family friends, Maira and her sister reached Los Angeles, where their mother asked, “Are you hungry? Do you want cereal?”
Maira gaped at her mother. She didn’t remember her, and she had never heard of cereal. “I ended up eating Froot Loops,” she told me. “It’s still my favorite.”
She learned English quickly, graduated from high school, and around 1997, when she was twenty-four, Maira was ready to marry and start a family. That’s when the letter from a blood donation center arrived—she had tested positive for antibodies to T. cruzi. She went several times to a specialist her doctor recommended. Then she stopped. The man only wanted to know if she had problems swallowing. Apparently he was thinking about the parasite’s attack of the digestive tract. She felt fine and moved on with her
life. She married. She had a girl, then a boy. The only time she thought about the kissing bug disease was when she was pregnant with her son, and he came early. She hemorrhaged. The question crossed her mind—could this be the kissing bug disease?—but she told the obstetrician’s staff about the diagnosis and no one showed concern.
…
Around the time her son turned six, Maira’s heart felt like it was pushing against her rib cage when she took a flight of stairs. “I would panic,” she told me. Her heart seemed as if it would burst from her chest. “You feel heaviness, pounding.” She was thirty-four, a few years older than my auntie was when she began having symptoms.
Like Tía Dora, Maira never told anyone outside her family about the kissing bug disease. What would she have told them? She didn’t know very much. Her husband, Danny, whose family was from Latin America, had also never heard of the disease. So Maira was shocked when Dr. Meymandi at the Chagas clinic said her children should be tested, that she could have passed on the parasite during pregnancy. Fortunately, her children tested negative. So did her mother and her husband.
I asked how her heart felt. Did it bother her?
“Lately I feel like there’s air inside my heart,” she said. “It feels like there’s a bone there trying to crack in two, like it’s stuck in there.”
In the waiting room, Maira did not look as if she were in any pain. She was joking with me. The first time she had an EKG, she told the technician, “Good luck finding my heart with my boobs.”
When Maira’s name was called, we learned I could not accompany her into the exam room, but Dr. Meymandi, whom I had interviewed about the kissing bug disease several times the year before, was happy to talk with me. She ushered me into her office, a windowless room with an L-shaped desk and three computer monitors. The short bookcase against the back wall 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 lab coat, a snow globe. A map of the world hung on the wall. It struck me that if the map were highlighted with Dr. Meymandi’s connections, both familial and professional, the lines would stretch from Los Angeles to Latin America, where many of her patients were born, and to Iran, her parents’ homeland, and specifically to Tehran, where the doctor briefly went to high school and played on a basketball team.
The Kissing Bug Page 14
