I’ve only heard of Chagas disease when filling out the questionnaire for the Red Cross, and I’ve always been able to easily say that I don’t have it, because I’ve barely even heard of it. I’ve also heard of kissing bugs, but had no idea the two were related.
I know plenty about the relationship between insect and disease now, thanks to Daisy Hernandez’s latest book, The Kissing Bug: A True Story of a Family, an Insect, and a Nation’s Neglect of a Deadly Disease. Part memoir and part journalistic explainer, The Kissing Bug is all terrifying—and unexpectedly tender.
Hernandez knew plenty about Chagas from a young age; from the age of six, she was interpreting for her Tia Dora when she was hospitalized with the disease. But it wasn’t until much later that she learned Chagas was a disease caused by tiny parasites transmitted by insects known most commonly in the U.S. as “kissing bugs.” But in her family, and their native Colombia, they just called them bichos—the catch-all word for insects. The lack of information didn’t keep Chagas from ultimately killing Tia Dora, or any of the other millions of victims, many of whom didn’t even know they had it at all.
But it did spark curiosity in Hernandez, who documents her travels across the country and world to find out more about the disease and why there’s so little information about it, let alone treatment for it. Along the way, she meets victims and survivors, and butts heads with “Pharma Bro” Martin Shkreli. Meanwhile, she recounts her thorny relationship with Tia Dora, with whom she alternated closeness and estrangement due to their personalities, circumstances, and Tia Dora’s prejudice against Hernandez’s sexuality—all of it complicated and colored by Tia Dora’s illness.
The Kissing Bug is fascinating from start to finish. But if you’re prone to creepy-crawlies (pun fully intended), I’d also recommend reading it in the dead of winter. Because it is very creepy, how much a life can change because of a bug bite. The kissing bug, of course, isn’t the only insect capable of transmitting parasites or other diseases that can derail a life—don’t even start about the mosquito—but Hernandez argues that it occupies a unique position as a host and transmitter for a disease that is virtually ignored by much of the world. There are few medications available, particularly in the US. Many doctors have hardly heard of it, even in countries where it’s prevalent. And because the parasite can lie dormant for sometimes decades before causing problems throughout the body, the link between cause and effect is often difficult to see.
That was the case with Tia Dora, who, according to family lore, contracted Chagas from eating an apple infected by a bicho. More likely, she was bitten while she was asleep. But keeping the insects out of the home is an almost hopeless battle, especially as people continue to spread into wilderness and the warming climate keeps making more and more habitat habitable for the bug. A person doesn’t need to be bitten themselves to contract Chagas, either, because it can also be transmitted in utero, in case you weren’t creeped out enough already.
We aren’t special, Hernandez points out—the kissing bugs suck blood from all mammals they can get their nasty little teeth into, and the parasite can live in all of us warm-blooded creatures. Killing its hosts is rare, percentage-wise, because that’s bad for parasite business, but it does happen across the mammal spectrum. But when there are so many victims, that small percentage means millions of preventable deaths. And untreated cases of treatable conditions that can interfere with the lives and livelihoods of millions upon millions, many of whom already live in poverty.
Against all of the clear-eyed reporting, Hernandez’s recollections of her tia and the complex relationship they shared are at times startlingly emotional and sometimes dreamy. Yet so many of the people Hernandez talks to are so personally affected by the disease that to omit her own personal experience would seem irresponsible—even if it does occasionally seem stretched a little far from the central premise.
The Kissing Bug is a creepy read, but it’s also a sobering one, and necessary in our world of changing demographics and climate. Maybe Hernandez’s work won’t change policy or turn the tide of Chagas, but it can make its readers more aware of a threat that is likely within our communities already, and maybe even lurking within our own cells.
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