The Kissing Bug Read online

  That summer, Tío Papeles taught me to float, to lean back and trust the water. “Open your eyes this time,” he said, in Spanish, and I did, enough to see the wispy clouds shape-shifting in the blue sky.

  …

  That summer when I thought of Tío Papeles as an Inca god, he was actually already wed to a Puerto Rican woman for his green card. He wanted to marry Tía Dora, but first he had to wait for his divorce papers. So they put off the legal part of the wedding (the trip to city hall, the marriage license), but not the church ceremony. Tía bought the dress, and the church rented them the hall five days before Christmas in 1985.

  We spent that fall submerged in fabric. My mother came home from the factory, and after dinner and washing the dishes, she sat on the bed late into the night, stitching sequins to the wedding dress. The fabric, cream and voluminous, stretched across the entire bed. A Victorian-style dress, with a high collar and long sleeves, it covered almost every inch of Tía’s body and made her look heavier, healthier.

  Tía Dora and Tío Papeles were a handsome couple. When they married that December, it felt to me that they had already lived a life together. They moved into his apartment and bought a television screen and watched movies together. On weekends, they hosted parties and drove my mother, my sister, and me to visit Colombian and Peruvian friends in Long Island and Queens. One year I won a prize in an essay contest, and the two of them arrived at our house smartly dressed and whisked us away to pick up the award.

  Two years later, Tío Papeles did get divorced from the other woman, and he legally married Tía Dora, who was by then under an order of deportation. He swore in writing to the US federal government that he would take responsibility for her. And it worked. My auntie received permanent legal status.

  Together, Tía Dora and Tío Papeles convinced my mother to buy me a set of the Encyclopaedia Britannica. I was in middle school and they were the first books I owned. My mother and I arranged them in a bookcase in my bedroom, then sat back to admire the golden foil of the letters on the spine of each volume. The encyclopedias felt to me like the epitome of the eighties, like Tía Dora’s life with Tío Papeles: extravagant. Some days, the joy proved so keen that all I could do was thumb through a single volume to feel its silky pages in my hands.

  …

  I never consulted the encyclopedia about the kissing bug disease, and I wonder if it would have explained how T. cruzi favors the hollow organs of the human body. How the heart, for all the metaphorical language imposed on it, is a hollow organ. The encyclopedia did have exquisite pages depicting the human body, including the gastrointestinal system. The esophagus looked innocent on those pages: a curious ribbon the color of cream twirling in midair, a part of the body that would never betray a woman. But in 1992, when I was seventeen and Tía forty-one, her esophagus began to unravel.

  At first, she couldn’t swallow. It hurt when she tried, as if her throat had suddenly shrunk. She spent days vomiting, and when she tried to eat, she ran a fever. The details are hazy and the medical records lost from that year, but we know this much: she had esophageal surgery. The damage T. cruzi inflicts on the esophagus is similar to the large intestine—it eats away at the neurons necessary for making the organ move. In this way, T. cruzi can kill a person by starving them.

  Tía survived the surgery and was bed-ridden for eight months. She praised the nurses in almost religious tones. “Con una delicadez,” she said about how they touched her body with such attentiveness, such sweetness. Finally, permitted to eat, she began very slowly, cautiously picking up a spoonful of rice as if the grain might prove perilous.

  …

  The year I turned seventeen Tía Dora was probably not speaking to me. We both agreed, I think, that Bill Clinton should win the presidency that November, but she hated my boyfriend. It did not matter that he was like her: light-skinned, Colombian, an immigrant. All she could see was that he was flipping burgers at McDonald’s. She, meanwhile, had gone through all the paperwork to have her college degree from La Salle University in Bogotá validated in the United States. She had taken college courses in New York for a year. She was certified to work as a substitute teacher, a bundle of ambition, and there I was: her US-born sobrina, proffering my love and my body to a boy she would not have considered in her own country. I thought she was a snob. She insisted she was right.

  In generous moments now, I believe the hardest part of my relationship with Tía Dora sprang from a feud neither of us understood. Perhaps the reason was grounded in cultural differences or generational ones (she was a baby boomer immigrant, I was a Gen X American). But my sister adored her and so did our young cousins in Colombia. This makes me think that our differences existed beyond the hard fabric of time and place. I am sure that if we had been born in the same generation, or a hundred years earlier in the same country, we still would have been at odds. I would have been a suffragette on the lecture circuit in the United States, and she would have pulled in her chin and complained that I should be content with my teaching job.

  …

  A year after Tía had esophageal surgery, Tío Papeles fainted on the floor of the printing factory. The hot weather that July in 1993 made his coworkers think he’d had a heatstroke, and he was rushed to the emergency room. Everyone was confident that he’d be back to work in another day or two. But Tío Papeles had stomach cancer. Tío Papeles would shrink. Tío Papeles would die within the year.

  His death felt like a blindness. When he was diagnosed, I was eighteen and in my first year of college. I pretended it wasn’t happening. I did what my father had taught me to do: work until the days vanish. I kept my two part-time jobs and moved in with my Colombian boyfriend and avoided Tío Papeles. I did not believe he would actually die.

  Tía Dora hated airplanes, but Tío Papeles wanted to die with his mother in Peru. So I imagine that when the plane took off, Tía Dora shut her eyes and braced herself. She probably gripped his hand, which by then had become so withered she could feel the bones and tendons. She prayed, invoking the Virgin Mother and the Holy Father, and she opened her eyes and there she was, in the clouds with the man she loved bound for his homeland.

  A month later, Tío Papeles was dead, his ashes joined to water and land that had once belonged to the Inca Empire. Everyone—the women in my family, the women in our community—whispered the same observation for months: “Dora’s the one who is sick, but he’s the one who died.”

  …

  In 2000, six years after Tío Papele’s death, Tía Dora began vomiting and running a fever. It hurt when she swallowed. Her esophagus, that string of ribbon, was dilated again, was losing its shape in her body and refusing to let her eat.

  That was the year of tubes: tubes in her nose, tubes to her stomach, tubes to get her nutrients. Every time we thought the medical world had saved her; we didn’t realize it was only granting her time.

  It was also the year I decided to come out to my family. While I was terrified of telling them that I was bisexual, I was twenty-five and overconfident about their love. I believed they would work it out somehow. My mother did. My father too. But not Tía Dora. She stopped speaking to me, and I retreated into silence and nurtured a fantasy: if Tío Papeles had lived, he would have forced Tía Dora to call me. He would have told her that to be homophobic is to be backward. That queer people have existed since the beginning of time. He would have taken Tía Dora to the Met and shown her ancient art, the provocative gaze of the men for each other. He was dead, however, and she was alive and we didn’t speak for the next seven years.

  Tía Dora had adjusted to life without my uncle and now she did the same with me. She spent two summers in Spain, working on her graduate degree in Spanish. She landed a full-time job in Jersey, teaching young children—Latinx, African American, Muslim American children—the days of the week in Spanish and the history of Cinco de Mayo. A local Spanish-language newspaper published her op-ed on the importance of learning Spanish. She bought a computer and a printer and crammed them
into the bedroom she had once shared with Tío Papeles.

  The silence between us broke when she thought I was dating a cisgender man again. She never said it this way, but I don’t think she actually cared that I was bisexual. Identity was irrelevant. She cared about who I was dating—the behavior. In the photograph I sent home from my new apartment in California, she saw me with a handsome Chicano and asked my sister, “Is this a real man?”

  After three decades, Liliana still knew to stay out of our arguments. “Look at the picture,” she told Tía Dora.

  The photograph showed a tall man with gorgeous black hair and generous eyebrows. It did not indicate that he identified as transgender. The image did not hint at the vial of testosterone or the scars where surgeons had removed his breasts. The photograph hid everything about him that was trans, everything about us that was queer, and Tía Dora started speaking to me again, and after so many years of silence, I did not argue with her. I had missed her.

  Two years later, I found myself again interpreting between Tía and an English-only nurse except this time it was in an emergency room.

  IT SOUNDS WORSE IN SPANISH

  That night at Hoboken University Medical Center we had a room with a door and a curtain to yank around the gurney. The walls were the color of pale eggshells.

  I was grateful for the door. I did not want my auntie hearing the yelps and cries of other people in the ER. Not tonight. For the first time in my life, I had been the one to bring my auntie to the hospital. Not a family friend, not a taxi, not a neighbor. Me. A torch had been passed. I lived across the country but was in town for a visit, and at thirty-five, I was finally old enough to take care of my auntie by myself.

  The stiff edge of the chair pushed into the backs of my legs. I didn’t take off my winter coat. On the gurney, Tía Dora lay on her left side, her hand tucked under her cheek. She was fifty-nine and looked like a shrunken fairy from a children’s storybook. She refused to tell me how much she weighed, but the paperwork I received later stated eighty pounds. The bones in her wrists pressed against her thin skin. Her hair, honey brown and straight, had split ends, and she licked her cracked lips repeatedly. She was dehydrated. She had been vomiting for two days and had severe abdominal pains.

  White coats came and went. They wanted blood. They wanted to hook her up to an IV. They wanted X-rays.

  From the gurney, Tía Dora raised her bony right index finger and waved a “no” to the X-rays.

  “¿Por qué no?” I asked.

  She whispered in Spanish, “They’ll get scared when they see the X-ray.”

  I didn’t argue with her. In general, we did not argue in hospitals. We acted like reasonable women who got along, who agreed on politics, who braided each other’s hair. If Norman Rockwell had painted Latina women for the cover of the Saturday Evening Post, he would have depicted me that night in the ER with my hair in a tight ponytail, my oval face strained in worry, my hands pulling a shawl over the hospital gown to cover Tía Dora’s frail shoulders. Rockwell might have titled the piece La Hija.

  Tía Dora had terrible pains in her lower belly. Finally a nurse arrived. He had thick fingers. He started to examine her, but Tía Dora’s eyes flashed open in horror at his touch, and she screamed out in pain, her mouth a dark cavern. I stood there helpless and silent, holding her hand.

  The doctors ordered IV fluids to counter the dehydration, and the next day, they sent her home.

  …

  Back in her apartment, Tía Dora told me about her trip to Colombia the year before. She had gone to see a doctor familiar with the kissing bug disease as her symptoms had worsened. She had lost a lot of weight. She knew that doctors in the United States rarely saw this disease. She was hoping this doctor could offer a new course of treatment. The physician followed protocols: a screening to check my auntie’s body for antibodies to T. cruzi.

  As she told me this, I sat at her dining table with a bowl of chicken soup. Tía Dora had tried to eat some broth, but it was too much for her. She stood from the table. She wore a heavy sweater layered over a blouse to try to hide how skinny she was, but that day nothing helped. She looked like a stick person a child might draw on a piece of paper, the clothing awkward boxes around her body.

  What happened with the tests?

  “He said I don’t have Chagas,” she told me.

  “What?”

  She didn’t have the antibodies. “But then what do I have?”

  The doctor didn’t say. We wondered if we’d had the wrong diagnosis for decades, but later when I spoke to her physician in Jersey, Dr. Steven Goldstein, he couldn’t imagine what else Tía Dora could have. She might have tested negative for the antibodies to T. cruzi, but she had all the clinical signs of the disease: her intestines unraveling, an esophagus that refused food.

  Later, I learned that the parasite loves to hide in the human body. That negative test results can be a mistake. That the CDC requires several tests to confirm a positive diagnosis.

  …

  We didn’t have enough time to look for answers. Two months later, Tía Dora was in the hospital for a scheduled procedure when her heart stopped. The medical team revived her, and when I arrived at the hospital from a cross-country flight, she was in the cardiac intensive care unit, on a ventilator. I grabbed her right hand and said, “Aquí estoy.”

  Her eyes widened, and she gripped my hand. Liliana stood at the foot of the bed near my mother, Auntie Biblia, and Radio Auntie, all of who were, by then, in their sixties and seventies. We prayed, but Tía Dora’s heart stopped again. The medical team rushed in and barked at us to leave. They revived Tía, and when they yanked back the curtains, a nurse said, “If her heart stops again, she might not make it.”

  I nodded but didn’t believe her. My auntie had been in and out of hospitals most of her life. Doctors had never known about the kissing bug disease, and they didn’t know about it now. To me, she was not the kind of woman who died. She was a woman who lived close to death.

  Back in the room, Tía Dora’s eyes had stopped blinking. No one told us that she had slipped into a coma. The ventilator hissed and beeped. I asked a nurse, “Is it okay for her to have her eyes open like that?”

  The nurse left the room and returned with gauze. Gently, her fingers pressed under my auntie’s thin right eyebrow and coaxed the lid down. I looked away. When the nurse left, I saw she had covered each eye with gauze. Where Tía Dora’s eyes should have been, now only two white wounds stared back at me.

  It was after one in the morning. We sent Radio Auntie home in a taxi. The nurses’ station glowed with its fluorescent overhead lights. The hospital rooms had grown silent, the curtains pulled open so nurses could keep an eye on the patients, all of whom were viejitos, their faces wrinkled from living full lives. My auntie, at fifty-nine, was probably the youngest patient in the cardiac ICU that night.

  Liliana and I sat in hard chairs at the foot of Tía Dora’s bed and listened to the ventilator. My sister was twenty-nine with a federal government job in Washington, DC, and soon policy makers would cite her research to encourage more states to grant college tuition waivers to foster youth. She had a plump face now, more our mother’s daughter than Tía Dora’s, and as the minutes passed, we started making plans for how we would take care of Tía when she recovered because we knew she would, as she had so many times before.

  The vital signs monitor howled, and the physicians ran in again. Liliana stammered, “I’ll get them,” and she ran to the waiting room for my mother and Auntie Biblia. I waited and stared at the drawn curtains. Suddenly my sister was sprinting back around the nurses’ station, almost skidding on the clean floor. My mother and Auntie Biblia trotted behind her, pocketbooks still dangling from their shoulders. We formed a circle outside Tía’s room. Auntie Biblia implored God to help.

  A doctor stepped out from the room, a woman with round brown eyes. She stared directly at me, and silently, she swung her head to the right.

  I waited.

  He
r head only swung in the other direction.

  I narrowed my eyes.

  The doctor swung her head again.

  Behind me, the women in my family burst into chaos. My sister sobbed. Auntie Biblia wailed. My mother cried a prayer.

  The doctor told me, “Give them a few minutes and then you can go in.”

  My sister’s shoulders trembled. My mother’s feet tapped the floor anxiously. Auntie Biblia grabbed my arm. I thought: No. The doctor has made a mistake.

  Inside the room, Tía Dora, free of all the machines, all the wires, even the ventilator, looked more like herself than she had in a long time. She appeared asleep on a table of pale marble, her hands clasped over her belly. The gauze had been removed, and her face was the one I had known for thirty years: the pale eyelids, the thin lips, the chin still pointing at me.

  …

  In the middle of the night, we shuffled out of the hospital and returned to Tía Dora’s apartment where we tried to sleep but instead cried and finally, though it was not yet daybreak, Auntie Biblia declared the hour decent enough to start the necessary phone calls. From the sofa bed, I listened as she phoned her brother, Ernesto, in Colombia. “Dora se nos fue,” she cried, but my uncle didn’t understand. Dora had left? Where had she gone? Was she lost?

  Numb, I took the phone receiver from my auntie and heard myself say, “Dora murió.” She died. In Spanish, the words felt ancient. Dora murió. It sounded like I was talking about Catholic churches, black lace gloves, heavy ruanas. Dora murió. It sounded so much worse in Spanish.

  CALL IT GRIEF

  A few weeks after Tía Dora’s death, my father had a massive stroke while waiting at a bus stop in Miami. Then the man I wanted to marry decided he wasn’t sure he would ever walk down the aisle, and an editor I helped to hire pushed me out of a job I loved. I lost all sense of narrative structure in life, of “I feel this because that happened.” Was I in shock about my auntie dying or Papi almost dying or me losing my job? Was I grieving the man I loved or Tía Dora?