A doctor said, “Tranquila, Margarita. You’re going to get through this.”
“Don’t lie to me,” she said.
Yalile tried to barge into the room, but a doctor stopped her again. In the waiting room, she wondered why it was taking her father and her siblings so long to get to the hospital. She watched a man in uniform pushing a portable CPR device down the hall. The man said hello to her. She did not think: that machine is for my mother. She did not think: my mother’s heart is dying. All she could think of was that she did not want her mother to be alone, and when would her father and her sisters arrive?
She heard a commotion and ran to her mother’s room. Two doctors grabbed her by the shoulders. “Look, calm down. We weren’t able to do anything.”
“Let me go in,” Yalile cried.
“We’ll bring her to you. You can’t go in.”
A nurse called for someone to bring my cousin a glass of water. The doctors dispersed. Yalile sat in the cold chair. She was alone when the door to her mother’s room opened. A man pushed out a gurney. On the gurney was a body wrapped from head to toe in blue blankets and bound with what looked like a thin cord. Her mother’s body.
Yalile ran to the gurney and screamed, yanking at the cord with her thin hands until it gave way. She tugged at the blanket, unraveling it to find her mother’s face—her mother’s mouth agape, her eyes painfully open.
“How can you give me my mother like this!” Yalile sobbed. No one answered.
Gently, she pushed her mother’s jaw until it closed. She pressed her mother’s eyelids down. One slid back open. She tried again to close the eye. She promised her mother that she would take care of her baby boy, el niño, who was already a teenager.
The man insisted he had to transport her mother’s body to the morgue. Yalile returned to the waiting room alone. When her father finally arrived, he asked, “And your mother?”
“She’s dead,” she said. “My mother is dead.”
It reminded me of that morning after Tía Dora died, when Auntie Biblia had phoned another uncle in Bogotá, but all she could manage to say was, “Dora se nos fue,” she’s gone, and I had taken the telephone receiver and said what Yalile had said, “Murió.” She’s dead. La Tía Dora murió.
…
I left Colombia with guilt. My cousin had loved her mother, admired her, and had a good relationship with her. Her grief, her despair, her sobs the night her mother died, and even now so many years later, made sense to me. My sister’s grief felt reasonable too. She had been close with Tía Dora, talking with Tía on a daily basis and without complaint. My sister, I reasoned, had a right to cry. I did not.
Before her death, I had thought Tía Dora might change one day. I had thought the years would pinch her corazón and make her accept me as her queer daughter-sobrina. I had put this hope on a shelf inside me somewhere. It was a half-torn seashell, this hope, and I had been ready to pull it down from the shelf, but then Tía Dora died. When I cried, I was not grieving my auntie, but what I had hoped would happen between us one day.
And I had expected that I would change too. That I would learn to quiet my quick temper, to refrain from arguing, to say, “Señora,” as if the word were a complete poem. I had hoped, and absolutely expected, that I would be able to practice love so that when Tía Dora’s time to pass finally came, I would grieve with a clear and full heart. But that was not what happened.
…
Back in the United States, a college student with a tender voice had a question for me.
We were in a classroom at the end of the semester. The room felt too hot. I was perched on a stool at the front of the class. They had read an essay I had written years before Tía Dora died in which I’d described how Tía did not accept me because of her homophobia. Another professor had assigned the essay, and this student with bright eyes wanted to know more about Tía.
“Is your auntie speaking to you now?” the student asked.
All the students, around twenty of them, looked at me and waited. It was a course on LGBT literature. Some of them were queer. Some of them had said so. Some of them had not said so. Is your auntie speaking to you now? They wanted a happy ending. They wanted to know it had worked out. They wanted to know it would work out for them too.
“She died,” I said.
HER LIFE
I have three dictionaries that belonged to Tía Dora. All together, they total more than four thousand pages. My favorite, the Pequeño Larousse Ilustrado from 1987, has five thousand black-and-white illustrations, as well as a color sketch of a man’s torso—his large intestine removed and his spleen painted the color of eggplants. On the page that has the definition for tía, there are illustrations of a tiara worn by popes, two tiburones, and the tibia, which is the stronger of the two bones in the lower part of the human leg.
I find this catalog of symbols—a papal tiara, a shark, and a bone that looks like a flute—illustrative of my relationship with Tía Dora.
…
One of the dictionaries is bilingual, and it points out that a colloquial translation for tía in English would be: “a good old woman.” It notes that when I want to treat an older woman with respect in Spanish, I should use “doña,” which is akin to referring to such a woman as a lady, but if dealing with an older woman who is poor, I can call her tía.
…
The longest of my tía’s dictionaries, at more than two thousand pages, is from the Real Academia Española, which officially governs the rules of the Spanish language. It details a dicho, or saying, that when a woman doesn’t marry, “she stayed an auntie.” Another dicho is “No hay tu tía,” which means that you don’t have a chance of getting what you want. It’s the equivalent of saying, “No hay remedio,” which figuratively means that there is no solution, but literally means there’s no remedy. The saying “No hay tu tía” is thought to come from Arabic, in which tutía would have referred to a medicinal ointment.
Taken literally, “No hay tu tía” means “Your auntie’s not here” or “You don’t have your auntie.”
…
I have Tía Dora’s dictionaries, and I also have her life now. Like her, I am a teacher. I spend hours drafting lesson plans. I give assignments. I grade. I think of my students when I’m not in the classroom and brag about their successes. I buy them sweets for the end of the school year.
Tía taught Spanish to elementary school children, and I teach creative writing to college students, and to me, it is the same work: a study in language, in the way words can pin you to the ground. No hay tu tiá.
One day, dashing up the stairs at work, I noticed I was dressed exactly like Tía Dora: slacks with pockets, a floral blouse, polite shoes. I remembered the idea, the caution, that we become our mothers, and I thought it was strange because I had never intended to work as a teacher, but here I was with a stack of graded papers and a room of students waiting to discuss their writing. I had become my tía, albeit with a genderqueer fiancé at home.
In a few months, I will be buying a new Spanish dictionary, one whose pages are made of stiff cardboard, the kind of dictionary a toddler can throw across the room or try to chew. A dictionary with one word for each letter. Amor. Bebé. Cariño.
I am getting ahead of myself with the dictionary. I should be thinking of baby shower invitations and crafting a basket of diapers and bottles. Still, I return to Tía Dora’s dictionary, to the words that will be needed because my sister is giving birth in a few months, and I will be a tía, an auntie, for the first time.
GRATITUDE
More than eighty patients, doctors, and experts granted me interviews for this book, and while I could not include everyone’s story, I want to particularly thank the following people who shared with me their experiences and ideas about living with Chagas disease: Graciela Taylor, Sandra Muñoz, María Elena Abrego, Jasmine, Valentina Carrillo, Josie McNeil, Lynn Hodson, Leo, María Elvira Pérez, Jersson Fuentes Pimiento, Clementina Valbuena, and Blanca Mayoly Misse Delgado. Th
e patients whose stories I narrate in this book—Janet, Carlos, Maira and Candace—have my gratitude for granting me so many interviews over the course of several years.
I worked on this book with the generous support of Miami University in Ohio, and its College of Arts and Sciences. The Humanities Center at Miami University sponsored a year-long Altman Fellows Program on Medicine and the Humanities, and this book greatly benefited from my experience as an Altman Faculty Scholar and the time spent in conversation with colleagues and visiting academics. A special thank you to the chairs of the English Department, LuMing Mao and Madelyn Detloff, for believing in this project, as well as my colleagues in the Creative Writing Program, the English Department, and Latin American, Latino/a, and Caribbean Studies, who make every academic year a pleasure.
A book like this requires much research, and the library staff at Miami University helped me many times with tracking down articles and books. I am thankful to them and also to the library staff at the National History Museum in London and the Moody Medical Library at the University of Texas Medical Branch.
Dr. Peter Hotez’s work on neglected diseases and poverty gave me a critical foundation as I worked on this book, and I thank him and the epidemiologist Melissa Nolan Garcia who spotted the editorial potential in my obsession with the newspaper origins of the name “kissing bug” and reached out for a collaboration. I am indebted to Patricia Edmonds at National Geographic who heard me talk about Chagas disease and gave me an opportunity to work with her and her talented team. Editors at Slate, The Atlantic, and Guernica also published my articles, permitting me to work with the material I was gathering for this book.
A special thank you to Dr. David Markowitz for sharing his personal memories of his father, Dr. Alfred Markowitz, with me. I wish Tía Dora could have met you.
A very warm thank you to my generous readers: Dr. Rachel Marcus provided insights and crucial feedback. Dr. Louis Kirchhoff spent a vast number of hours discussing T. cruzi with me and reading my sentences with great care. Professor José Amador, whose scholarly work on the history of medicine in the Americas I so admire, pointed me in the right direction multiple times. And Reyna Grande asked critical questions and helped me to find the book’s final structure.
It’s hard for me to imagine this book without the guidance of Stephanie Elizondo Griest and her incredible books of narrative nonfiction. I am also so grateful to Wudan Yan whose fact-checking made this book so much better and to my speaker agent, Jodi Solomon, who makes so much possible.
From the start, I knew this book would find the right editor, and Masie Cochran at Tin House turned out to be that person. Her questions helped me to focus the book, and she provided such necessary organization to the manuscript. Thank you! A special gracias to the entire Tin House team, especially Craig Popelars and Nanci McCloskey, who made the business end of this work effortless; Anne Horowitz and Shasta Clinch, whose copyedits and proofreading taught me so much; Spencer Ruchti, for his excellent fact-checking of the endnotes; and Elizabeth DeMeo, who read the manuscript with such a keen eye.
My friends: Thank you, Catina Bacote, for being the best nonfiction comadre. Pam in Colorado and David in Maine sat with me at the start of this project and gave me the necessary courage to start asking questions. Alice Elliott-Sowaal kept me sane with spiritual sustenance and Minal Hajratwala helped me stay on task in the most gentle of ways. Amy Lewis and Jessie Tannenbaum answered my writerly questions with great patience. Gracias!
My family supported me so generously as I worked on this book. Gracias a mis primas Yalile Sosa y Martha Mercedes Sosa Ruiz por compartir conmigo sus recuerdos de su mamá, y a Juan Carlos Sosa y su esposa, Ginna, por recibirme con tanto cariño en Tunja. Con mucho agradecimiento a mi Tío Ernesto y Tía Magdalena Sosa quienes han sido tan queridos conmigo en mis viajes a Colombia. This book, in particular, would not have been possible without my mother, Alicia Hernández, and my tías, Rosa Sosa and María de Jesus Sosa, whose memories of Tía Dora helped me tremendously. Gracias Mami! Gracias Tía Chuchi! Para mi papi, Ignacio Hernández: otro libro!
While I worked on this book, my sister, Liliana Hernández, collaborated with Dr. Rachel Marcus and Jenny Sanchez to convince Virginia’s legislature to officially recognize a Chagas Awareness Day in that state. As always, hermana, I stand in awe of you and your talents. Thanks to you and my brother-in-law, Utsav Chakrabarti, for hosting me during interview trips. On the home front, Zami, my beloved cat, took many naps next to me while I conducted phone interviews. She passed a few months after I finished the first draft of this book. Thank you, my friend.
Frankie Clark heard about kissing bugs on our first date. Five years later, they spent a very long Friday night helping me with research into insect taxonomy. Their love made it possible for me to do this work. Thank you, mi amor.
NOTES
During my research, I relied on these three books about Chagas disease:
Joseph William Bastien, The Kiss of Death: Chagas’ Disease in the Americas (Salt Lake City: University of Utah Press, 1998).
Jenny Telleria and Michel Tibayrenc, eds., American Trypanosomiasis, Chagas Disease: One Hundred Years of Research, 2nd ed. (New York: Elsevier, 2017).
Rodrigo Zeledón et al., An Appraisal of the Status of Chagas Disease in the United States (New York: Elsevier, 2012).
A WORD SHE WHISPERS
Much of the information about Chagas disease in this chapter is drawn from two sources: Caryn Bern, “Chagas’ Disease,” New England Journal of Medicine 373, no. 5 (July 2015): 456–66, and Maria Carmo Pereira Nunes et al., “Chagas Cardiomyopathy: An Update of Current Clinical Knowledge and Management: A Scientific Statement from the American Heart Association,” Circulation 138, no. 12 (September 2018): e169–e209.
PAGE 2 Few people, though, are diagnosed and fewer receive treatment: Jennifer Manne-Goehler, Michael R. Reich, and Veronika J. Wirtz, “Access to Care for Chagas Disease in the United States: A Health Systems Analysis,” American Journal of Tropical Medicine and Hygiene 93, no. 1 (July 2015): 108–113.
PAGE 2 It belts out the familiar tune: Fay Bound Alberti, Matters of the Heart: History, Medicine, and Emotion (Oxford: Oxford University Press, 2010), 62.
PAGE 2 In 1836, Dr. Peter Mere Latham insisted: W. B. Fye, “Pierre Mere Latham, 1789–1875,” Clinical Cardiology 12, no. 10 (October 1989): 609–11.
PAGE 3 They are, like Tía Dora, immigrants: Susan P. Montgomery et al., “Neglected Parasitic Infections in the United States: Chagas Disease,” American Journal of Tropical Medicine and Hygiene 90, no. 5 (May 2014): 814–18.
PAGE 3 Close to six million people are currently infected: World Health Organization, “Chagas Disease in Latin America: An Epidemiological Update Based on 2010 Estimates,” Weekly Epidemiological Record 90, no. 6 (2015): 33–43.
PAGE 3 Every year, more than ten thousand people die: “Chagas Disease (American Trypanosomiasis),” World Health Organization, https://www.who.int/chagas/epidemiology/en/.
PAGE 3 In the United States, women are not routinely screened: Montgomery, “Neglected Parasitic Infections,” 814–18.
PAGE 3 My auntie also did not know that blood banks: US Food and Drug Administration, Use of Serological Tests to Reduce the Risk of Transmission of Trypanosoma cruzi Infection in Blood and Blood Components (Silver Spring, MD: Office of Communication, Outreach and Development, 2017).
PAGE 3 The World Health Organziation classifies it: David H Molyneux, Lorenzo Savioli, and Dirk Engels, “Neglected Tropical Diseases: Progress Towards Addressing the Chronic Pandemic,” Lancet 389, no. 10066 (January 2017): 312–25.
PAGE 4 The New Yorker has called the kissing bug disease: Jennie Erin Smith, “America’s War on the Kissing Bug,” The New Yorker, November 20, 2015.
PALABRAS
PAGE 7 In the seventies, Colombia’s civil war remained tucked away: Catherine C. LeGrand, “The Colombian Crisis in Historical Perspective,” Canadian Journal of Latin American and Caribbean Studies 28, no. 55/56 (2003)
: 165–209.
PAGE 7 Airplanes flew from Bogotá without exploding: “All 107 Aboard Killed as Colombian Jet Explodes,” New York Times, November 28, 1989. For a compelling novelist’s interpretation of Colombia during the 1980s, I recommend Juan Gabriel Vásquez, The Sound of Things Falling (New York: Riverhead, 2014).
PAGE 7 no one worried about being kidnapped: Sibylla Brodzinsky, “Kidnapping in Colombia: The Role of Abductions in Decades-Long Conflict,” Christian Science Monitor, June 21, 2013. For a poignant fictional account of the kidnappings, I recommend Ingrid Rojas Contreras, Fruit of the Drunken Tree (New York: Doubleday, 2018).
PAGE 7 At the Palace of Justice, the Supreme Court judges: Ana Carrigan, The Palace of Justice: A Colombian Tragedy (New York: Four Walls Eight Windows, 1993); and Joe Parkin Daniels, “Colombia Remembers One of the Bloodiest Events of Its Long Conflict,” VICE, November 7, 2015.
PAGE 12 My auntie’s large intestine had dilated: Fritz Köberle, “Chagas’ Disease and Chagas’ Syndromes: The Pathology of American Trypanosomiasis,” Advances in Parasitology 6 (1968): 63–116.
PAGE 15 In an article in the New York Times, years after his death: Barron H. Lerner, “Young Doctors Learn Quickly In the Hot Seat,” New York Times, March 14, 2006.
PAGE 15 This may explain how Dr. Markowitz diagnosed Tía Dora: Köberle, “Chagas’ Disease and Chagas’ Syndromes” 63–116.
PAGE 15 A man can, as Tía Dora did, appear pregnant: Joseph William Bastien, The Kiss of Death: Chagas’ Disease in the Americas (Salt Lake City: University of Utah Press, 1998), 21.
THE APPLE
PAGE 20 The son of Jewish immigrants, Dr. Markowitz apparently knew as much: Dr. David Markowitz (Dr. Alfred Markowitz’s son) in discussion with the author, May 17, 2019.
PAGE 21 outside of Miami, our town had the most Cubans: Jesus Rangel, “A Touch of Havana Brings Life to Union City,” New York Times, February 22, 1988.
The Kissing Bug Page 20