Daisy Hernández - The Kissing Bug

With The Kissing Bug , Daisy Hernndez takes her place alongside great science writers like Rebecca Skloot and Mary Roach, immersing herself in the deeply personal subject of a deadly insect-borne disease that haunted her own family. Its a tender and compelling personal saga, an incisive work of investigative journalism, and an absolutely essential perspective on global migration, poverty, and pandemics.

AMY STEWART , author of Wicked Bugs

The question The Kissing Bug investigates is timely: Who does the United States take care of, and who does it leave behind? Through the personal story of Hernndezs family and countless interviews that include patients and epidemiologists, the inequity of the healthcare system is exposed. Hernndez writes to the heart of the story with immense tenderness, compassion, and intelligence. A riveting read.

ANGIE CRUZ , author of Dominicana

Daisy Hernndez introduces us to the most important bug youve probably never heard of. Authoritative and gripping at the same time, The Kissing Bug is a deft mix of family archaeology, parasite detective story, and American reckoning. A much-needed addition to the canon.

DANIELLE OFRI , MD, PhD, author of When We Do Harm: A Doctor Confronts Medical Error

In this wonderful story, Daisy Hernndez describes how the bite of a kissing bug impacted the life of her beloved auntie and mentor. She dives into the fascinating history of the kissing bug disease and how it destroys the lives of the bitten, often poor immigrants who fall through the cracks of our for-profit medical industry. An engaging, eye-opening read for anyone looking to learn more about the human suffering caused by the collision of a parasite and years of neglect by the United States medical system.

KRIS NEWBY , author of Bitten: The Secret History of Lyme Disease and Biological Weapons

Copyright 2021 Daisy Hernndez

All rights reserved. No part of this book may be used or reproduced in any manner whatsoever without written permission from the publisher except in the case of brief quotations embodied in critical articles or reviews. For information, contact Tin House, 2617 NW Thurman St., Portland, OR 97210.

Published by Tin House, Portland, Oregon

Distributed by W. W. Norton & Company

The Library of Congress has cataloged the printed edition as follows:

Names: Hernndez, Daisy, author.

Title: The kissing bug : a true story of a family, an insect, and a nations neglect of a deadly disease / Daisy Hernndez.

Description: Portland : Tin House, 2021. | Includes bibliographical references and index.

Identifiers: LCCN 2020057435 | ISBN 9781951142520 (hardcover) | ISBN 9781951142537 (ebook)

Subjects: LCSH: Chagas disease. | Communicable diseases--United States--Social aspects. | Communicable diseases--United States--Political aspects. | Epidemics--United States--History--20th century. | Families--Health and hygiene--Biography.

Classification: LCC RC124.4 .H47 2021 | DDC 616.9/363--dc23

LC record available at https://lccn.loc.gov/2020057435

First US Edition 2021

Interior design by Diane Chonette

Cover images: Nature Picture Library / Alamy; Rawpixel

www.tinhouse.com

THE KISSING BUG

A True Story of a Family, an Insect, and a Nations Neglect of a Deadly Disease

DAISY HERNNDEZ

The line from From an Old House in America is from Collected Poems: 1950-2012 by Adrienne Rich. Copyright 2016, 2013 by the Adrienne Rich Literary Trust. Copyright 2011, 2007, 2004, 2001, 1999, 1995, 1989, 1986, 1981, 1967, 1963, 1962, 1960, 1959, 1958, 1957, 1956, 1955, 1954, 1953, 1952, 1951 by Adrienne Rich. Copyright 1984, 1978, 1975, 1973, 1971, 1969, 1966 by W.W. Norton & Company, Inc. Used by permission of W.W. Norton & Company, Inc.

Excerpt from A Xicana Codex of Consciousness: Writings, 2000-2010 . Copyright 2011 by Cherre Moraga. Published by Duke University Press in 2011. By permission of Stuart Bernstein Representation for Artists, New York, NY and protected by the Copyright Laws of the United States. All rights reserved. The printing, copying, redistribution, or retransmission of this Content without express permission is prohibited.

For Maya Durga

Any womans death diminishes me.

ADRIENNE RICH

There is a prayer in the act of writing.

CHERRE MORAGA

CONTENTS

The New York City hospital is a black, cavernous mouth. I am six, and I am not afraid. Bolting from the elevator, I run down the corridor ahead of my mother and baby sister, my sneakers squealing on the clean floors. The doors are half-open. The doors are invitations. A cuarto here belongs to us. The room holds Ta Dora, my mothers sister, my auntie-mother.

A single window in the room stretches toward the ceiling, and Ta Dora is there with her pointy chin and thin face. The Spanish words tiptoe from her mouth. Mi vida, she murmurs when she sees my mother.

Ta Dora rises onto her elbows. The gown sways on her small frame. She smiles at me with approval. My mother has combed my black hair into two ponytails. My sister, almost a year old, giggles in her summer dress. Outside the Manhattan heat licks our faces, but in the hospital, in my aunties room, the cold air bites our ears.

The doctors have sewn a line of dark stars across Ta Doras belly. Las cicatrices. And they have told her a word my mother whispers when she thinks I am not listening: Chagas.

No one in the hospital that day, or for many years after, told me that Chagas is a parasitic disease. Transmitted to humans by triatomine insects called kissing bugs, the parasite can often be eradicated with medication when a person is initially infected. Few people, though, are diagnosed and fewer receive treatment, which means the single-celled parasite Trypanosoma cruzi can spend up to thirty years in the human body, quietly interrupting the electric currents of the heart, devouring the heart muscle, leaving behind pockets where once healthy tissue existed. In the worst cases, the heart can eventually die.

The illness has come to be known in English as the kissing bug disease.

The corazn, the heart, is an accordion. It expands inside the rib cage, then squeezes. It belts out the familiar tune, the sacred thrumming that physicians in the early nineteenth century compared to a whip or, depending on the disease, a dogs tongue lapping. In 1836, Dr. Peter Mere Latham insisted that the musical movements of the heart could not be rendered in paragraphs. It is useless to describe them, he wrote of the organs varied sounds. A physician had to learn by listening directly to a patients chest.

The kissing bug disease tampers with this music, and doctors cannot explain why most people live with the parasite without any symptoms, while 20 to 30 percent of those infected suffer cardiac problems. To date, doctors cannot predict whose heart will be spared. Unless the infection is caught early, there is no cure. In a few infected people, like my auntie, the parasite strikes not the heart but the esophagus and the colon.

The Centers for Disease Control and Prevention (CDC) estimates that about three hundred thousand people with the kissing bug disease live in the United States. They are, like Ta Dora, immigrants. Close to six million people are currently infected, mostly in South America, Central America, and Mexico, and every year, more than ten thousand people die from the disease.

Ta Dora did not know these harrowing figures or that the parasite can be transmitted from a woman to her baby during pregnancy. In the United States, women are not routinely screened during pregnancy for the kissing bug disease, though each year more than three hundred babies may be born infected. My auntie also did not know that blood banks in the United States now screen people for the parasite the first time they donate. Fortunately, the disease does not spread like the common cold or Covid-19. Most people are infected from direct contact with a parasite-carrying kissing bug.