The Kissing Bug Page 11
She would have adored the Queen Anne dining table I bought, the stylish curve of the table’s legs, the gleaming cherrywood, the newly upholstered seats. She would have sat there with me in the evening during a long weekend visit and debated aloud if she dared to eat more of the pasta I had cooked for us.
…
I am lying to myself.
Tía Dora would never have visited me in Ohio. She would have stopped talking to me shortly after I moved here when it became clear that I had a new sweetheart and that my sweetheart was not a cisgender man. Tía would have realized that “amistad” was the word I used for several months to avoid gendering my sweetheart in Spanish, and she would have grown suspicious when I referred to my sweetheart as “amiga” while my sister called my sweetie “amigo.”
Maybe she would have come to my sister’s wedding in a silk dress and heels, sat at a different table, and ignored my sweetheart and me. She would have poked at the rice during the reception, danced some but not to the Ricky Martin songs, which she thought were ridiculous. Or maybe she would have refused to attend the wedding, but I doubt it. I want to doubt it. I want to think Tía Dora loved my sister so much it would have made everything else, including who I loved, tolerable for an afternoon.
…
In Spanish, absence is ausencia, and also the word falta, whose definition spreads across two pages of the Spanish-English dictionary that once belonged to Tía Dora and is now mine. Falta is a noun, a verb, an adjective. It means the absence of pesos, the not having enough milk, the needing más de todo. It means a transgression in soccer, the penalty for kicking or tripping or shoving another player. It can mean a love that is not here, as in: “me haces falta,” or “I miss you” which I always hear as: “you make me miss you.”
…
The more I interviewed experts on the kissing bug disease, the more I returned to a memory of Tía Dora. It was the summer of 2000, just before I’d come out to my family as bisexual; the summer that Tía Dora spent two straight months in the hospital with her esophagus dilated again.
When I arrived at the hospital in the middle of that summer, I found the curtain partly drawn around her bed. Tía Dora was so thin, so fragile, that she looked like a bird with broken wings. She must have weighed less than ninety pounds.
She tried to smile. I leaned over to kiss her forehead. She raised her right hand to touch my shoulder.
“Me hicistes falta,” she whispered and began crying.
My throat tightened. We were not a family that said, “I love you,” that cried openly, that said, “I miss you,” which was what Tía was telling me. She had missed me. It was the closest she ever came to saying, “I love you.”
In that moment, she was not the auntie who had banished me from her life when I came out to my family; she was not the auntie who had cared more about appearances than about me. She was the tía who said, “Me hicistes falta.”
I held this memory of Tía Dora like an amulet, a protection against the part of her that had hated me. Also, without this memory, my grief did not make sense to me.
…
I spent most of that summer in 2000 next to Tía Dora’s hospital bed. We watched television. I flipped through magazines and showed her pictures of celebrities. When we ran out of gossip about family members, we moved on to friends, then las vecinas. I napped or she did. Auntie Biblia and my mother took turns on the other side of the bed. We never left her alone. At night, Auntie Biblia slept in the chair or in the other hospital bed when it was empty.
One afternoon, Tía Dora told Auntie Biblia not to be silly. “Vayas y descanses,” Tía Dora said, and she pointed out that I was there with her and Auntie Biblia should go home and take a good shower and rest, stop at the church if she wanted.
Auntie Biblia hesitated. She was fifty-nine that year, and I was twenty-five, and she looked me in the face for a long time, thinking about whether or not she could trust me with Tía Dora.
I said, “Go, Tía. I’m here. Nada va a pasar.”
Finally she left, and a short time later, Tía Dora needed to use the bathroom. We rang for an orderly and waited. No one came. “I can take you,” I said and started to help Tía out of the bed.
She had lost so much weight that it felt like I was assisting a young child. I placed my hand under her right forearm, and she quickly grabbed it, unsteady on her feet. Upright, she dragged her slippers on the floor softly, and after a few steps she stopped, glanced at me, and started giggling. Using my childhood nickname of Tata, she said, “Tata is taking me to the bathroom.” She giggled again. I said, “That’s right,” as if I had been this grown up for a long time. Slowly, we made our way.
JANET AND HER BABY
Tía Dora tried to have children. When I learned this after she died, it surprised me. She had us. That was my first thought, as if my sister and I should have been all the children she and Tío Papeles wanted or needed. I had chosen not to have any, and I had figured that Tía had done the same. She had not. She had wanted a baby, her own child, but pregnancy had eluded her.
Her body, of course, would have struggled with a pregnancy, and I don’t think she knew that the parasite for the kissing bug disease can jump from mother to baby in utero. It’s called congenital Chagas disease, and it can be hard to identify because infected newborns can be born prematurely and have symptoms like jaundice and anemia, which are easily attributed to other causes.
Such a transmission happened in Washington, DC, around 1985. Dr. Kirchhoff, who was working at the National Institutes of Health at the time, screened more than two hundred people—all of whom had grown up in Central America—for the kissing bug disease. Almost 5 percent of the people screened in the study had the disease. One, however, had been born in the United States: a three-month-old baby whose mother, like mine, was an immigrant. The baby was infected.
The CDC estimates that anywhere between 63 and 315 babies infected with T. cruzi are born every year in the United States. In Latin America, the numbers are much higher: an estimated nine thousand children are infected in utero each year.
I thought of these children in the United States as “lost babies.” The CDC and state public health officials do not know who they are because pregnant women are not routinely screened for the kissing bug disease in this country. If they were, many of the lost babies could be saved since the drug benznidazole can often cure children with the disease. But lost babies cannot be treated. According to the Pan American Health Organization, about one-third of all new infections with T. cruzi come from mother-to-child transmission.
Sometimes these lost babies are not found until they are grown. In 2013, a man in his early twenties showed up in an emergency room in Miami with chest pains. His lab results and EKG were normal. A year later, he tested positive for the kissing bug disease when he donated blood. His brother, two years older, also tested positive. Born and raised in the United States, they were infected in utero. The parasite had spared the older brother’s heart but attacked the younger brother’s, interfering with its electrical currents, making it so that he had irregular heartbeats.
…
I scoured medical literature and found one baby who had not been lost. In 2010, the year Tía Dora died, a boy in Virginia was born prematurely at twenty-nine weeks. He weighed just a little more than four pounds and fluids were building up in his chest cavity that could damage his heart and lungs. When his mother told doctors that she had the kissing bug disease but had never received treatment, they tested samples of the baby’s blood and found the trypomastigote form of T. cruzi. The parasite was circulating in his body, looking for cells to invade. Treated with benznidazole, the baby was free of the parasite within a year. When I phoned the pediatrician, though, she told me the family didn’t want to talk to the media. Unfortunately, I was the media.
I continued interviewing experts about the kissing bug disease, and one day, a cardiologist told me about a mother named Janet who had the disease and was willing to speak with me. Janet
agreed to talk with me because she hoped that if I wrote her story, the pesadilla, the nightmare, would not happen to another family.
I agreed to protect her privacy, not to publish pictures of her and her family, and after the 2016 presidential election, I decided not to use her last name and to avoid, as much as possible, references to her country of origin because I could not be sure, now, what anyone would do with that information.
…
When I met Janet, I was immediately taken with her house in Maryland. She and her husband had landscaped the front yard and started installing a white picket fence. The front door was a deep shade of cranberry. The pavement on the driveway gleamed. I took one look at her house and thought: this is a woman who wants a good life. I thought, too, of Tía Dora, the striver immigrant, the luchadora immigrant. Somehow this was all there in the cranberry door and the start of that picket fence.
Janet, in her late thirties, looked like the actress Sofía Vergara without the spiky heels. She had long wavy hair and almond-shaped eyes. The day we met, she pulled her hair into a bun, and she spoke to me intimately, as if we had known each other all our lives. She addressed her family members with love: “mi amor,” “mi niño.” She was delighted that I had noticed the details of her home. “You should have seen how it looked!” she said, smiling proudly as she told me about the changes they’d made to the house. They had cleared not only shrubs from their yard but seven giant trees and what felt to her like miles of poison ivy. She had insisted on clearing the yard so she could one day look out the front window and see her children playing in the sun.
We sat on the brown sofa in her living room, and she told me how the nightmare began.
…
It had been the spring of 2015, and the day started with lipstick and mascara. Janet felt good. Fabulous, really. Mother’s Day had recently passed and she was pregnant with her second son. Her due date was not until August. She had plenty of time. She applied her makeup that morning and tucked her long hair, the color of caramel, under a turquoise summer hat. She dressed her two-year-old son, Junior, in a crisp pair of shorts and shiny sneakers. Her husband, José, worked long hours on construction sites, and she loved that he had the day off. Their friends, another couple with a toddler, joined them. They were all driving to New York City for the day and stopping for lunch in Ocean City, about three hours from their home.
On the boardwalk, the vendors’ voices spiraled in the air, and Janet and her husband and their friends took pictures and ordered lunch. It was American food: pasta dishes and beef. They told jokes and laughed and kept their eyes on the children. Then, with no warning, Janet felt a seeping between her legs. Was it urine? Her underwear grew wet. She panicked. “I need the bathroom,” she told her husband and friends, and she sprang from the table and hurried through the crowd on the boardwalk, trying to get to a public restroom. Her underwear now felt completely soaked. Her black stretch pants too. Her breathing quickened.
She pushed faster across the boardwalk, past the families squealing on four-seated bicycles. José kept in quick step next to her with their friends and the children. Janet had already been to the hospital earlier that week. Her body had not felt right. Some days the baby hardly moved. Almost every day, she felt her belly slightly harden, the muscles stiffen, an orange that refused to be squeezed. At the hospital, they had taken her blood pressure and checked the baby’s heartbeat. A nurse had explained that everything was normal. That if she didn’t feel the baby move at all, she should come back. That if anything changed, she should come back. Now her underwear was drenched and her black stretch pants too. What was happening?
Janet pushed the bathroom door open and went in with her friend María while the men waited outside with the children. In the bathroom, Janet shut the stall door behind her. She pulled down her pants. She couldn’t make out a color on the dark fabric. She wiped, then cried out to María, “It’s blood!”
She wiped again. The blood soiled the toilet paper, red and bright.
María, on the other side of the stall door, murmured, “Tranquila, tranquila.”
Janet wiped again and the blood did not stop.
From the other side of the stall’s door, María tempered her voice and said, “Janet, roll up the toilet paper. Make a pad.”
Janet yanked on the toilet roll, piling the sheets in her hands.
Outside, she said to José, “We need to find a hospital. I’m bleeding.”
…
The next ten hours crushed together in confusion.
They arrived at one hospital near the beach, but the doctors sent her to another hospital. Janet didn’t understand. All the words ran together in English. She didn’t speak the language, but José did. From what he could understand, the other hospital had a better-equipped maternity ward.
The bleeding slowed. The bleeding stopped. At the second hospital, a doctor said Janet would need to stay for observation. José told her, “We’re three hours from home. What if you have the baby here? We don’t have anyone here.”
The thought of a birth felt impossible. It was May, not August. The calendar couldn’t collapse, not like this. But what if José was right? What if the baby came? Tomorrow or in a few days? At least in Maryland they had his auntie and a circle of friends. Everyone else—their parents, Janet’s sisters—lived in South America.
Janet was worried, too, about Junior. Her two-year-old had wailed from his father’s arms when the ambulance had taken her to the second hospital. He needed a proper meal, a bath. Under the fluorescent hospital lights, Janet dressed.
It was after ten at night. They drove south on 95, the highway unfurling in the night, pointing toward home. The next morning, they drove to the hospital where Janet received her prenatal care. The baby looked fine on the monitors. Everything was normal. The doctors sent her home, insisting on total bed rest.
But Janet had been pregnant before. This did not feel the same. The hardness of her belly, the way that hardness came and went, bothered her. She looked for comfort in what the women back home had told her: all pregnancies are different. She hoped they were right.
…
Hearing Janet’s story, I tried to remember that the numbers are low. At most, 315 babies are born infected with T. cruzi every year in the United States, and only a few of those babies will grow up to have heart damage. A smaller percentage of those babies with heart problems will die. And yet the longer that I held Janet’s story, the more difficult it became to think of numbers—one lost baby is impossible to bear.
…
A few days after their Ocean City trip, José woke up at four in the morning to drive to the construction site. He kissed Janet goodbye in the dark, and she ambled through the house, grateful that Junior was still sleeping. She made her way to the sofa, beneath framed family portraits. Already Junior had grown so much. In one photograph, he was not yet a year old, dressed in a sailor’s outfit, a chubby-faced boy with his father’s eyes. Janet rested on the sofa, her hair a long coil around her shoulders.
Janet had not planned on having children in the United States—in fact, she had not expected to live in this country. The youngest of nine children, she had grown up in South America where she had seen her mother make do with very little and had watched an older sister stay in an abusive marriage. One day, Janet looked at her mother and sister and vowed that she would never be taken advantage of by any man, neither with a slap to the face nor by legal means in court. With the help of her older siblings, she graduated from law school. She landed a legal job in the city and started making money. Good money. While her coworkers vacationed in the United States, Janet took her mother on day trips in their own country, indulging the old woman with gifts: earrings, new lipstick, a generous lunch.
Periodically friends asked who she was dating, but Janet waved them away. “I don’t have time,” she’d say. In her thirties, she lived with her mom and used her savings to buy houses, fix them up, and rent them out. Once a girl from a family of modest means,
Janet planned on becoming a landowner.
Then one day, a friend declared, “I’ve met your soul mate, Janet. He’s just like you. He only works and thinks of his mom. If I wasn’t already with someone, I’d have him for myself.”
José lived in the suburbs of Washington, DC. He drove cranes on construction sites and called his mother in South America with a duty verging on obsession. Money was the reason he had come to the United States at eighteen, and more than a decade later, José worked twelve- to fourteen-hour days and had savings and two cars. He had picked up plenty of English, too, enough to hold conversations and pass his citizenship test, and for a time, he had run his own carpet-cleaning company. When a friend of his sister’s pushed Janet’s phone number into his hand, he called. That first time, they stayed on the phone for hours.
No one was more surprised than Janet. They began speaking on the phone every day. One afternoon, José called and said, “Open your front door.” He had sent his sister with a CD of romantic ballads. Another time, he arranged for the delivery of a cake and flowers. Soon, the bachelor who had expected to grow old alone in Maryland was talking of marriage, and three months after meeting over the phone, they did marry. Janet wore a strapless dress and gloves the color of new pearls. She moved to Maryland. She became pregnant with Junior. She looked around at their basement apartment one day and declared, “We need a house, José. We can’t raise a family in a basement.”
They found the house in Maryland covered with trees and shrubs. It was in a county that had once been home only to white and Black families. By 2014, when Janet and her husband moved into the house, about a quarter of the public school students in the county came from Latinx families.