Daisy Hernández’s “The Kissing Bug” inhabits the interstitial space between a memoir, the story of a struggling migrant family forced to deal with a bizarre and devastating disease, and a thoughtful exploration of both the science and the socioeconomic realities of Chagas disease, also known as American trypanosomiasis.
Hernández, author of a previous memoir, “A Cup of Water Under My Bed,” was born into a migrant family from Colombia. In the 1980s, she spent her childhood in New Jersey but lived in between cultures and languages throughout her formative years. One of her aunts, Tía Dora, had become deathly ill and came to live with them because health services were better in the United States. As a child, Hernández knew little of her aunt’s condition and believed the woman was ill from eating an apple; not much was known about her condition and no one at home gave her details. As she grew up, Hernández learned a bit more: her aunt had suffered from and then died of Chagas disease, a rare illness transmitted by a parasite that lives in certain bugs and affects the heart and digestive systems. She learned that people contract the illness after being bitten by what people called the kissing bug. But Hernández had lingering questions, so she interviewed doctors, epidemiologists, researchers, and Chagas disease patients in search of answers. “The Kissing Bug” blends the results of Hernández’s research with her family’s history as well as the author’s personal experiences.
The beauty of “The Kissing Bug” is that it’s nonfiction that packs as much heart, tension, lyricism, and horror as some of the best contemporary fiction. The heart comes from looking into Hernández’s family, especially at her Tía Dora’s long battle with Chagas. Tía Dora’s struggles were often so harrowing — emergency hospitalizations, surgeries, losing portions of her intestines, her esophagus dilating until she couldn’t eat — that the narrative morphs into a horror story about a woman battling an unseen monster inhabiting her system. Horror stories are only effective when empathy is present, and the way Hernández presents her family to readers is so endearing that we do care.
Caring has been in short supply. Hernández does a great job of contextualizing Chagas disease both historically and within the socioeconomic realities that allow it to thrive in developing countries. While there are more than three hundred thousand people in the Latinx community in the United States living with the disease, many of them come from other countries or contracted the disease elsewhere. The author always keeps science, her own story, and the realities of Chagas intertwined to shine a light on the reasons such a devastating illness is mostly ignored. Chagas disease, as readers learn from the start, is a disease that mainly affects poor brown people. Named for the Brazilian doctor who described it in 1909, Chagas is classified — along with leprosy, sleeping sickness, and river blindess — as “a neglected tropical disease” by the World Health Organization. These are, she writes, “afflictions the world has largely ignored as they affect mainly poor people in countries beyond the borders of the United States and Western Europe.”
While “The Kissing Bug” is a family story, a memoir, a history book, and a scientific text rolled into one, Hernández masterfully juggles every element, and weaving together events and parts of her investigation without ever changing her voice or making the writing less personal. Her search for the bug itself, her quest for other families, her interviews with doctors and epidemiologists, and even the archival work she did to bring the story of the kissing bug from the 1500s to present day vividly share the space here beautifully, and Hernández’s own fears, questions, and traumas are often at the center of it.
“The Kissing Bug” is an important, well-researched, and timely book that shines a light on the hitherto ignored history of an extremely damaging disease that has been marginalized because of the people it affects. In this gripping narrative, Hernández allows her Tía Dora to become not a ghost that haunts the story but a human being who makes Chagas more immediate and real as well as a bittersweet memory that spurs the author on. Hernández looks not only at the science of Chagas disease but also at the way poverty and racism have created a perfect storm to allow the illness to run rampant in certain communities — despite the fact that it can be easily identified, treated, and kept from being deadly if diagnosed early. The way she presents these truths makes this a necessary read for anyone concerned about health crises across the world.
The Kissing Bug: A True Story of a Family, an Insect, and a Nation’s Neglect of a Deadly Disease
Tin House Books, 336 pages, $27.95