Daisy Hernández, writer and Assistant Professor of English at Miami University, sets out to develop a new project studying Chagas Disease. The Chagas Disease (nicknamed the kissing bug disease due to being transferred from the bite and feces of a kissing bug) is a parasitic disease that is commonly found in poverty-stricken areas in Latin America. However, there are at least 300,000 people in the United States who are affected by the disease, with as many as eight million victims worldwide. Hernández explained that one in every three patients afflicted with Chagas goes on to develop heart disease or gastro-intestinal problems. The disease tends not to demonstrate noticeable symptoms, until one is struck with the serious repercussions of something like a sudden heart attack.
Growing up in a Cuban-Colombian household in New Jersey, Hernández first touched upon the Chagas disease when writing about her Aunt Dora in her memoir A Cup of Water Under My Bed. Her tía Dora struggled with and eventually died from the disease. After the death of her aunt, Hernández sought to learn more about the disease that claimed her aunt’s life. Now, Hernández is determined to inform the general public about the dangers of the Chagas disease with a larger and more involved project.
Hip Latina: What inspired your investigation of the Chagas disease?
Daisy Hernández: The project started with the death of my auntie. My auntie had been diagnosed with Chagas disease when she was in her late twenties. A few years after she passed I had just finished my memoir and, [with] that off and published in the world, I was writing a fictional piece about Chagas. That is when I realized I didn’t know much about the disease. There was a lot of technical information that I needed to know. When I started to investigate, I realized how hard it was to get information about the disease. There wasn’t a book for a general reader—for someone who wasn’t a doctor or scientist. That got me started on the project.
HL: You wrote about your tía Dora in your memoir A Cup of Water Under My Bed and how she died from the Chagas disease. Since she inspired this project, will she make an appearance in this book?
DH: Yeah, definitely. She was like a mother to me. I’m interested in making it a fusion of memoir and literary journalism to the degree that I can. I’m someone who, when I’m interviewing patients, hears a lot of my auntie’s experience in what patients are telling me. I grew up in a working class, immigrant home. We were not a family that had access to health insurance. That influences my ideas of this disease that is so primarily affected with the way that we decide to use medical resources on a medical, global scale. Also, I’m interested in that fusion of memoir and literary journalism—telling that larger story through an infinite voice.
HL: Why do you think there exists such little research on the Chagas disease?
DH: It’s a disease that primarily has affected very poor communities in Latin America. A lot of the research is driven by demand and profit. This is a disease that in a lot of ways people can feel that they can ignore, because it’s easy to keep it confined to a certain segment of the world population, not just in terms of the region, but also in terms of the socioeconomic dynamic. That allowed the disease to really fester and continue.
HL: You’re planning on visiting Bolivia, a Latin American country with the highest rates of the disease. Do you find that some populations, such as those living in the rural versus urban communities, are more impacted than others?
DH: Rural areas are definitely going to be more affected. [However,] what I’m finding is that it was a common practice that when the kids had time off from school they would go to visit their grandfather’s ranchito out in the rural areas and spend a summer there. I think that one of the things that I’m noticing is that this distance that we presume is there between rural areas and city life is really imaginary. The two places have this really dynamic kind of relationship. Although I think you’re primarily going to see it in one little area, the dynamics have also changed so much in Latin America that there’s a lot of back and forth. I don’t think it’s fair any more to say it’s only a disease of the rural areas.
HL: What books did you look to for inspiration in terms of genre and style during your writing process?
DH: I’m looking at Tracy Kidder’s book Mountains Beyond Mountains, which is a profile of a doctor called farmer who has been working in Haiti for decades. That is very much literary journalism. I would not call it memoir, but the writer plays a role in the beginning and at the end of that book. That is really helpful for me to think about how to balance the personal voice. Stephanie Elizondo Griest—really amazing writer— also has a new book coming out that’s about the U.S.-Mexico border and then her experiences with Native American communities on the U.S.-Canada border. The book isn’t out yet, but I got to read this early draft of that that I found so inspiring and moving too because she really blends memoir with reporting. That’s definitely a guide. I’m looking at too Héctor Tobar—he was at the LA Times for 25 years. His book Translation Nation which was him basically looking at the growing participation of Latinas and Latinos in the U.S.-specific system. He starts the first chapter with his own experiences with civic engagement—what his father wanted for him versus what he wanted for himself as a young man. It really uses that memoir piece to set up the thesis for his book, then the rest of the book is primarily reporting until we get to the end, we’re we experience his own journey again.
HL: The Washington Post published an article about the Chagas disease a little after your publication in The Atlantic. The newspaper mentioned how communities in Northern Virginia should not be stricken with worry about Chagas since this illness was primarily in Latin America. Why then write about Chagas if it is a disease affecting one particular region in the world?
DH: Migration has really changed in the last 40 years. Those patients from Latin America who are in the United States are also in Spain, and Italy, and Germany, and even in Japan. You’re seeing patients all over the world, not just confined to Latin America. You’re also having situations where people from the U.S. or other parts of the world are going to Latin America, don’t know anything about the disease and end up in situations where they can become infected. The migration goes both ways. I also think that Chagas disease raises much larger questions about who we decide to take care of. It raises a lot of questions around migration and health that I think are important to consider.