Daisy Hernández began translating medical information for her family before she’d started first grade. Her aunt came from Colombia to Hernández’s home in New Jersey seeking treatment for a mysterious wasting condition. At a post-op visit, 6-year-old Hernández put Tía Dora’s concerns into English for the nurse, and relayed medical guidance into Spanish.
With her new book, Hernández — now a journalist and associate professor at Miami University in Ohio — translates for the nation the story of the devastating disease afflicting her aunt and 300,000 other Americans. “The Kissing Bug: A True Story of a Family, an Insect, and a Nation’s Neglect of a Deadly Disease” is part memoir, part investigative thriller. Hernández seeks to understand how this disease, more common than Zika, more deadly than Lyme disease, can be so little known. Add kissing bug disease to others — including COVID-19 — on our shelf of public health disasters fed by racism, classism, cross-cultural misunderstanding, climate change and ignorance.
The biting insect, or kissing bug, that transmits the parasite that causes Chagas disease, lives primarily in Central America, South America and Mexico. (It’s also found less commonly in the American Southwest.) The parasite eats away at the heart or, less often, the digestive system.
“The parasite can even go after the part of your heart that is most familiar, the bottom tip where the two halves meet, the bottom tip you once drew in elementary school for Valentine’s Day,” writes Hernández in her lyrical prose. The disease interrupts the heart’s “sacred thrumming.”
The tragedy Hernández describes is not just the fact of this awful disease that leaves 40-year-olds in end-stage heart failure, but the medical ignorance and systemic racism that add to the damage.
Tía Dora is lucky to find a physician able to diagnose her, but unfortunately her system is already in decline. Hernández’s thorough research takes her across the United States and to Colombia; she interviews more than 80 people, including many others sick with the disease. She talks to a young man waiting for a heart transplant, who carries with him a máquina, or machine, in a messenger bag to keep his heart pumping. She talks to a mom in Maryland whose baby contracted the illness in utero; the child gets treatment but the immigrant mother’s lack of insurance means she doesn’t have care for herself.
The neglect of immigrants is one of the book’s gravest concerns. Doctors in the United States lack the familiarity that would aid diagnosis. Medical schools haven’t kept up. The World Health Organization calls Chagas disease, which affects 6 million globally, a neglected disease.
At a free screening in a church basement in Virginia, Hernández observes that the population most affected by the disease is figuratively underground. “White and well-off Americans would not see them, and so these families constituted, in a way, a Second America.” It’s what she calls an “American reality: Some people are taken care of and others are not. A choice is made.”
Kissing bugs are active only after sundown, creeping from dark corners while people sleep. They recoil from light. Chagas disease itself runs its course in secret, often undetected. “It is easier to forget a disease that cannot be seen,” Hernández writes. Her book shines a light on this neglected harm, like the sun forcing kissing bugs into retreat.
“The Kissing Bug: A True Story of a Family, an Insect, and a Nation’s Neglect of a Deadly Disease”
By Daisy Hernández
(Tin House; 308 pages; $27.95)