by Brahidaliz Martinez
My seventh grade Drama teacher’s swollen stomach looked like a basketball teetering on the edge of a hoop. My classmates speculated that it was a life-long pregnancy, an alien parasite meant to blow up her stomach at any moment, or she was just fat. Appearing to be in her forties or fifties, she had sticks for limbs and a gaunt face. Her tight jeans, which barely reached her waist, showed no curves. Only her belly stuck out, the part of her that barely moved.
Her name slipped from my memory over the years since. I knew she was a fair-skinned woman from Columbia, but nothing else other than her protruding stomach. She was also often sick, probably the only teacher at school with the most absences. Another teacher once spotted her gasping for breath while walking up the stairs. She interjected her complaints of stomach pains in between her lectures. Some of my classmates laughed and called her a “fatty” under their breath. My mother taught me before kindergarten that I should never laugh or stare at someone, no matter how strange their appearance or behavior seemed. The former I swore by; the latter I defied.
Whenever I thought of her, I chalked it up to just her having a potbelly. It wasn’t until recently that I began to wonder whether it was Chagas, a parasitic disease affecting nearly 6 million people in the United States and Latin America. Also called the kissing bug disease, most hospitals and doctors, in the States and Latin American countries, aren’t entirely aware of it.
Author Daisy Hernandez navigates the stakes and consequences of Chagas in her latest book, The Kissing Bug. She effortlessly braids memoir and research, layering the complexities of this alarming but obscured disease. Too many people with Chagas don’t even know they have it. Some people with the disease experience heart failure around their late thirties or forties. The parasite, transmitted by the insect’s feces after sucking its victim’s blood, slowly eats away at the heart tissue. There’s treatment – the medicine benznidazole and or a pacemaker or defibrillator – but it’s inaccessible for underrepresented communities, undocumented immigrants, and low income people. There’s no cure for Chagas. The figurative heart of the book, however, involves Hernandez’s maternal aunt, Tía Dora, a victim of the kissing bug.
Hernandez begins her book with a childhood memory of hearing the word Chagas for the first time when visiting her aunt at the hospital. She was six at the time, and she wouldn’t find out the meaning behind that word until many years later. Hernandez’s family, from Columbia and Cuba, struggled with not having adequate health care access because of their immigration status. Tía Dora, described as lively and ambitious, suffered from digestive and then cardiac issues. Her inflated stomach made doctors believe that she was pregnant until they performed surgery on her, discovering her dilated large intestine. No one suspected that it was the kissing bug causing these health complications until a visit with another doctor.
As with her research, Hernandez lyrically writes the memoir parts of her book, using clever analogies and vivid imagery. Her poetic passages gracefully set the stakes of this disease and its devastating social and economic effects:
The corazon, 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 dog’s tongue lapping…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.
p 10, ebook edition
In between narrating her family relationships and Tía Dora, Hernandez adds her interviews with doctors, a university professor in Columbia, and kissing bug patients. The author describes the health care inequalities in underrepresented populations in the States, particularly Black and Latino, referring to it as the Second America. Hernandez takes her readers to the 1940s Texas medical experiment (at Austin State Hospital) on an unnamed Black man. Like with the Covid-19 pandemic, not everyone has access to treatment and health insurance. Not all bodies are treated fairly. The FDA hadn’t approved Benznidazole, the prescription meant to treat Chagas, until 2015. But too many people, infected or not, still don’t know about this disease.
Hernandez’s interviewees include people from all walks of life, from an American woman in Texas (where the kissing bug disease has existed for about a millennium) to a doctor haunted by a patient whose death from the disease could have been prevented. She spends time with Carlos, a Central American immigrant at his Maryland apartment, where he walks and sleeps with his left ventricular assist device (LVAD), a black box that keeps his heart beating. Like many people with the kissing bug disease, Carlos appears healthy and happy. Only his box stands out. He’s had heart failure since his early twenties. He was in his forties and waiting for a heart transplant when Hernandez met him. Like with Tía Dora, Carlos has grappled with previously unexplained health complications and adjusted to this new normal.
“The black machine in Carlos’s hands made it possible for his heart to beat and again I thought of accordions, of the heart expanding and contracting, of a man forced to carry his heart in his hands.” (p 146, ebook edition)
An eye opening and sensitive look into Chagas, The Kissing Bug does more than shed light on a mysterious but deadly disease. It’s an intimate narrative about the purposely forgotten in the medical world.
Brahidaliz Martinez is a contributor (webcomic reviewer) to The Geekiary. Their cross-genre chapbook, Coquí Song, is forthcoming (2023) from Mason Jar Press.
