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Dialogues: a conversation with Daisy Hernández
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Dialogues is a new series from the Global Health Matters podcast that includes interviews with some of the world’s sharpest global health minds and brightest thinkers. The goal of each Dialogue is to go beyond the echo chambers that exist in global health and to have in-depth conversations with guests who have explored global health issues from their multi-disciplinary perspectives.
In this episode of Dialogues, host Garry Aslanyan speaks with Daisy Hernández about her personal experience with Chagas disease and the journey she undertook to understand it while writing her book. Daisy is an essayist, memoirist and journalist. Her work focuses on the intersections of race, ethnicity, immigration, class and sexuality. She is the author of “The Kissing Bug: A true story of a family, an insect and a nation’s neglect of a deadly disease” (Tin House, 2021), which won the PEN/Jean Stein Book Award and was named a top 10 nonfiction book of 2021 by Time magazine. This conversation reminds us, as global health professionals, to go beyond our public health silos and to present our work in a way that motivates experts, policy-makers and lay audiences towards greater action.
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The technician dug into the bag and pulled out a jar that had a single kissing bug. It was the species triatoma dimitiata, and it was beautiful. The orange stripes at the edge of its abdomen gleamed in the morning light. The more I looked at the insect, the more it struck me as a practice in contrast. The bright stripes alternating with black, the six legs at perfect angles, two dark spots like teardrops above its belly.
SPEAKER_00Welcome to Dialogues. I'm Gary Aslanyan. This is a special series of the Global Health Matters Podcast. In this series, I'll be blowing open some of the echo chambers that exist in global health. To help me in this quest, I've invited thoughtful and inquisitive individuals from different walks of life. Each of them has explored and written about global health issues from different disciplinary perspectives. I hope this dialogue series will give you, the listeners, an opportunity and space to step out of your daily routine and contemplate global health issues through a different lens. So let's get started. For our first dialogues episode, I'm joined by Daisy Hernandez. Daisy is a journalist and an associate professor of creative writing at Northwestern University in the United States. Daisy's investigation into Chaga's disease started at an early age when she experienced firsthand the impact of this disease on a close family member. In her attempt to make sense of this experience, she undertook a rigorous journey to understand the multifaceted nature of this disease. In her book The Kissing Bug, she brings together her personal story and those of numerous other families. Time magazine named her book in the top 10 nonfiction books of 2021. Hi Daisy, welcome to the show. How are you today?
SPEAKER_02I'm fantastic. I'm so excited to be with you.
SPEAKER_00Where do I find you today, Daisy?
SPEAKER_02I am in Southwest Ohio in the United States, near Kentucky and Indiana.
SPEAKER_00Oh, great, great. So, Daisy, in your book, Kissing Bug, it explores the history of neglected condition, Chaga's disease. Why did you decide to do this and what inspired you to write about this particular disease, which affects mainly the poor and the marginalized?
SPEAKER_02I wanted to write a little bit about what had happened to my auntie, my piadora, who was diagnosed with Chaga's disease when she was about 30 years old. And so I assumed that there was a book out there for a general reader. I knew there would be medical articles and science articles, but I just assumed that there would be an easy-to-understand book about this disease. And I couldn't find that. And what I found was that that book did not really exist. And it made me wonder about the stories of other families, specifically in the United States, because my auntie was diagnosed in the United States when I was very young. I grew up in the shadow of Chaga's disease. And I say in the shadow because it's been so neglected that, you know, we thought it was a very rare disease. We had no idea about the millions of people who have this disease around the world, mostly from Latin America. And so initially, I actually didn't know that I would write a book. I just wanted to find those families. And I thought I would write an article, which I did. I wrote an article for The Atlantic, interviewed a woman who had tried to get prenatal screening because she actually was somebody from South America who was aware of Chaga's disease and wanted to see if she herself was infected and what that would mean for her child. And she ran up against the obstacles that you would expect in the United States, which is that her doctor did not know what Chaga's disease was. So I learned her story and I started talking to the few doctors in the United States that have been really dedicated to their Chaga's patients. And I thought, okay, I have at least a second article to write, and then a third, and then a fourth. And I realized that I needed this to be a book that I wanted to write about the history. I wanted to write about the political situation in the US around public health. I wanted to write about the Latinx diaspora in the United States. So it became a book. And I really followed in the footsteps of the great Tony Morrison, the novelist, who said that, you know, she wrote her first book because it was it was a book that did not exist and she wanted to read it. And so she has said, you know, if there is a book that you need to read, it's your job to go and write that book. And so I basically decided I that's what I needed to do. Even though I did not have a background in science or medicine or public health, I knew nothing. So I tell people, you know, don't be afraid to move forward because people have been very generous with me with interviews and their time.
SPEAKER_00Did you feel that putting a human face to the disease helped make it real or more understandable for your readers?
SPEAKER_02It's interesting you asked that because when I talk with people who are in the medical field or in public health, that's some of what I hear. But I wasn't coming at it from a medical perspective. I was coming at it from the other way where I desperately, like I knew the human story. I was the human story. My auntie was the human story. So I had grown up with the story, but we felt, I felt very isolated with it. So I wanted more stories to see what other people had experienced. And what I found was, you know, stories very similar to my aunties, you know, feeling very isolated, feeling like you're the only person who has this disease in the entire world, struggling to find a doctor who knows about it, struggling to understand what medication could do or not do at the stage that you're at with this disease. For me, though, in a larger context, I come from, you know, I have a journalism background. I also write memoir. So I always come to the work, um, I've always come to the work from the beginning of my life, um, that the human story has to come first, that the narrative of people's lives have to come first because ultimately everyone, every person is interested in stories of other people. They, you know, there's a particular part of your brain that's interested in the statistics, that wants the data. But at the end of the day, what evokes emotion is the story of another person's life. It allows readers and total strangers to walk into a much larger conversation. So it's that doorway into a much larger conversation.
SPEAKER_00Interesting. Thanks for that. Because even in the name Kissing Bug, there's really a human connection because the name comes from the habit that that insect has of feeding from around the mouth of people. And in fact, it depends. I'm sure when you worked in Colombia, but in Brazil, they call call this bug barbeiro, meaning someone a barber. So an insect that comes to your beard or your mustache around your mouth, and it's really fascinating. The communities already put real humanity into it. It's just not been as well known.
SPEAKER_02Yeah, Gary, I have to tell you a really fascinating story about the title. So in English, yeah, it's called, it's been nicknamed the kissing bug, but it actually was not for scientific reasons. It was actually for the most unscientific reasons, which was a fascinating part that I ended up discovering initially through some interviews with these wonderful researchers in Texas. In the late 1800s in the United States, we had this really strange situation that happened where people were showing up in emergency rooms with um these huge swollen lips. And they were claiming that they had a bug bite that came in the night and that they were never able to catch the insect. And some people have said that it was like a case of mass hysteria where people, you know, perhaps were had spider bites or, you know, could have been anything else. Um, but what happened was that it reached the point where the Department of Agriculture got involved and they ended up writing a uh piece for um popular science at the time. And they basically said uh it might be one of six insects. It might be this, it might be that. But what happened was that one of the six insects um is the triatomine species. Um and I think that what happened is that was about 1899. And of course, the discovery of Chaga's disease in Brazil with Dr. Carlos Chagas happens about 10 years or so later. And what I could find, I actually went into newspaper archives trying to track down the development of this phrase. And I think what the journalists did is that they went back in their own archives and saw, oh, this was the nickname for that kind of insect. And they ended up applying it without fully, I don't know. I don't know that they fully appreciated how the insect um operates and so forth.
SPEAKER_00Yeah, yeah. And of course, you already mentioned that Chagas itself is named after Carlos Chagas, the Brazilian physician who first described it. And really the parasite's name is Triponosoma Cruzi. Cruzy for Osvaldo Cruz, another pioneer of medical science in Brazil, that he used his name to name a parasite. Anyway, something about names in this story. So I was struck in your book, um Daisy, by the narratives, multiple narratives that you've included, all connected to the parasite and the disease. Why did you take this approach and how did these narratives supported your advocacy efforts with diverse audiences?
SPEAKER_02I was not expecting to have multiple narratives. I really thought that the primary narratives would be of the patients that I was interviewing, these very many families across the United States. And it was actually my editor who asked me if I would be willing to write more about my relationship with my auntie. And I said yes because I wanted to work with this editor and I was excited. And I'm always I like to write memoirs, so I'm happy to write about my family's experience. I was worried because my auntie her experience with the disease is really different than the experience of other people. And this was a really powerful lesson for me as a writer, is that, you know, I worried so much that because there were some anomalies, um, in terms of like the fact that she was able to be diagnosed in the 1980s in New York City was very, very unusual. The fact that she was able to receive medical treatment at that time in the US without being a US citizen was very unusual, not something that would so easily happen today. So there were just a lot of things that were unusual. And what it taught me was that I was, as a writer, you are able to find the points of connections between a story that seems really different and the stories of many other people. And ultimately, the narrative of me and my auntie was about a mother-daughter relationship. It was about caretaking in both directions, how she took care of me, how I took care of her. And that actually was um really a connective uh tissue with the stories of other patients. Because even though I think, you know, we talk about this as a neglected disease, this is also a disease of a family. You know, it's a chronic, it becomes a chronic, you know, ailment. And so you have lots of family members doing caretaking. And so I felt like actually that ended up being this unexpected moment of um connection as I was writing the book. So I I felt like starting there was the most intimate experience and the most universal in a lot of ways. But before I felt like I could fully transition to the stories of patients, I felt like I had to basically take the readers on this the same journey that I went on, which was that I had to learn everything about the disease as well, um, as much as I could as a lay person through interviews. So the second part of the book walks readers through my interviews with doctors, biologists, infectious disease specialists, um, entomologists, you know, all these different people. And then the third part of the book, we see, well, what are the stories of other families like in the mostly in the United States, a little bit in Colombia as well?
SPEAKER_00There is a very powerful scene in the book where you are visiting the hospital and your mother whispers the word chagas for the first time. Little did you know at the time the impact this word would have on your family. Daisy, could you read this part to us?
SPEAKER_02The New York City hospital is a black, cavernous mouth. I am six years old and I am not afraid. Bolting from the elevator, I run down the corridor ahead of my mother and baby sister, my sneakers squealing on the clean floors. The doors are half open, the doors are invitations. A cuarto, a room here, belongs to us. The room holds Diadora, my mother's sister, my auntie mother. A single window in the room stretches toward the ceiling, and Diadora is there with her pointy chin and thin face. The Spanish words tiptoe from her mouth. Mi vida, she murmurs when she sees my mother. Diadora rises onto her elbows, the gown sways, and her small frame. She smiles at me with approval. My mother has combed my black hair into two ponytails. My sister, almost a year old, giggles in her summer dress. Outside, the Manhattan heat licks our faces, but in the hospital in my auntie's room, the cold air bites our ears. The doctors have sewn a line of dark scars across Diadora's belly, La Cicatrices, and they have told her a word my mother whispers when she thinks I am not listening. Shagas.
SPEAKER_00Thank you, Daisy, for this very vivid account. How did your aunt's illness impact you, your family, and your community?
SPEAKER_02In our case, my auntie was diagnosed in the US early in the 1980s. And, you know, what we experienced was this is of course before Google, which maybe was a difficult thing and a good thing. We couldn't get all the misinformation. So for us, there was there was an incredible, you know, we really had to rely on the doctors, you know, we really had to rely on the knowledge that they had. It was for my auntie, she had a very intense fear around stigma. She never wanted people to know that she had Chaga's disease. And I think for her, that was tied absolutely to her status as an immigrant in the United States. It's also a parasitic disease, um, which people have all sorts of very adverse reactions to the idea of someone having a parasite. So for her, you know, she taught me as a young child that I was never supposed to tell anyone that she had chagas. Actually, that was one of the parts of her story that was really heartbreaking for me was realizing when she died from chagas disease and we had a funeral, there were her coworkers. She ended up staying in the United States, becoming a Spanish language teacher. And she had coworkers who came to the funeral who didn't know what she had died of. And this is someone who spent months. She, you know, she there were months that she was hospitalized and she lost time from work because of Chaga's disease. And her coworkers thought that it was cancer. And she never wanted to talk about it. And so I think she carried a certain level of shame around that. I was really surprised actually when I started interviewing families and ended up interviewing around stigma, ended up interviewing uh someone in Texas who's not from the Latinx community. She's a white woman who was born and raised in Texas and ended up being infected there by a local uh kissing bug. And she also had the same fear around stigma and around telling people. And it was reinforced by one of the medical providers that she consulted with who said, you know, you don't go around telling people, even though she thought, wait, we should raise awareness about this because we have these insects and people should know what's going on in their community. So I think there's still a lot of fear and um a lack of knowledge. You know, it really depends on what community you're in in the United States. But I was really surprised to find that. And then, you know, I think the biggest impact for my family, as I just uh mentioned, my auntie was, you know, there would be years that were wonderful, um, you know, very few symptoms. And then there were years where she was hospitalized for weeks, even months. And so it's a chronic disease, right? So it becomes a disease in which the fat the whole family is affected in terms of everything from emotional caretaking to physical caretaking to employment and lot loss of income. And uh my auntie lived with us for, you know, a number of years herself, right? So the financial support and the emotional and physical caretaking. I saw that when I started interviewing other families. You know, there were many stories I couldn't include in the book. Um, but across the board, you know, there are sisters and brothers and children and grandchildren, you know, it becomes a family experience in terms of taking care of someone with Chaga's disease.
SPEAKER_00Your book highlights the issue of access to care even in high-income countries such as the United States. You described that Chaga's disease is contained to a second America. Let's listen to this description.
SPEAKER_02Standing in a church basement, watching the line of immigrants to be tested grow longer, I began to consider another narrative because it seemed to me that the kissing bug disease, Chaga's disease, is contained to a second America, and that in a broad and sweeping ways, this containment is often the goal of public health programs. We do not consistently eradicate infectious diseases, we contain them to communities of color, to the poor, to the homeless, to people in this second America. The phrase the great epi divide makes me think of old paper maps and signs about who is allowed to enter and who has to stay out. It is a phrase that points to an American reality. Some people are taken care of and others are not. A choice is made. The Great Epi Divide sounds more accurate to me than the more ubiquitous phrases like disparities in healthcare, which suggests that a terrible thing has happened, but without active participation on anyone's part. Disparities arise, inequalities exist. These words trouble but at the same time offer reprieve. No one is implicated. The same is true of the word poverty, that knife of an abstraction. A phrase like diseases of poverty obscures the degree to which we have made choices about funding for public health.
SPEAKER_00Daisy, how has access to care changed in the United States since the time your aunt Theodora arrived in the 1980s?
SPEAKER_02It's a very complicated question about care today in the United States. It really, your access to care really is determined by where you live. So when my auntie was here in the 1980s, she came on a tourist visa. She pursued medical care at a clinic that provided, apparently provided care for low-income uh community members. It does not seem that they ever asked about her citizenship status. Today in the United States, for someone who's an immigrant, for someone who's undocumented, it's going to be largely determined by where you live. So some of the patients that I talked to that were in the Washington, D.C. area, they were able to access certain levels of care. I interviewed a doctor whose patient I did not get to meet. Um, she was someone in a different situation where legal permanent resident, but in that part of Texas, there are some very intense uh limits on what kind of uh treatments doctors can provide. So they could provide a defibrillator, but um not a heart transplant, for example. The patient that I include in the book was able to actually get a heart transplant, even with Medicaid dollars, right? Um, so it really, really depends um on where you live in the United States and also what the healthcare providers are doing behind the scenes. Um, that doctor in Texas, you know, shared with me that even getting state Medicaid dollars to pay for the defibrillator was something that she and doctors and medical care health professionals had to fight for that at the state level. Your life is just completely different if you live in Iowa or if you live in Washington, DC. It's night and day in terms of care.
SPEAKER_00And even when it comes to health workers of doctors actually knowing about Shaga's disease, I think it's better um in terms of the global exposure uh to different things to those trained in the north now is different from maybe what it used to be. But it's still complex uh in terms of um they're not even looking for a parasite, they're looking for another condition before they even get to understanding that it's actually an infectious disease.
SPEAKER_02Okay, I agree with you. I think because I worked on this book for about seven years and I saw a lot more awareness, just even in those like seven to ten years in the United States. It's been really incredible to see awareness among healthcare professionals. I keep saying still a long way to go. But again, it's also really determined by where you live. You know, there's been a lot of act activism in LA County. And so I think if you're an LA county, everyone knows, oh, there's a particular cardiologist who's devoted to this. The same thing right now in Florida. We have an infectious disease specialist who's been working on Chaga's disease. So people sort of, you know, within the community they know. And then the upside, of course, is I suppose Google. You know, people get online and uh you can track down folks that way as well.
SPEAKER_00Daisy Hernandez, your research took you across the United States and Colombia. You describe how pathogens don't care about bank accounts, national boundaries, tax returns. Yet not all healthcare systems are equipped to deal with disease such as chagas. How did you see this playing out across the places and maybe even in Colombia? How did that play out?
SPEAKER_02Yeah, I did get a chance to go back to my auntie's home country, and I was actually surprised when I went to Colombia. Obviously, they have a much greater awareness than in the United States about Chaga's disease, I would say in general. But I was still surprised to find that there was, you know, similar to the United States, a really a divide between the rural areas and cities. So I met this doctor, a young, young doctor, right out of medical school, born and raised in the city, in the capital. And he was doing his one-year commitment of going out into rural areas to provide care. You know, Chaga's disease was completely new for him. Um and he made such an impression on me because he was so eager to learn everything. He had basically created his own textbook on Chaga's disease that he showed to me. A number of patients infected, um, was really resourceful, um, really incredible person. But it really also reminded me of what I was seeing in the US, which was sort of like individual doctors ending up with their patients and realizing, like, okay, I didn't learn this in medical school 20 years ago, in some cases, you know, 30 years ago or longer, I need to learn about it now. And um, taking the initiative to learn about the disease, to educate their colleagues as well, in some cases to go out into community to do testing as well. I think that actually a lot of what I saw in the United States around COVID was what I had already seen around Chaga's disease. So here in the US in the early days, we didn't know where to go get tested. We had testing sites that sprung up in very wealthy neighborhoods when we desperately needed them in very poor neighborhoods where people had to go to work and couldn't work from home, right? So a lot of the disparities that we saw with COVID, I had already seen with chagas in terms of not knowing which lab would test for people, struggling, you know, doctors themselves hustling to figure out, you know, who would test for it. But yeah, I think I was actually surprised being in South America to see a certain number of similarities, which I think is just it's true around the globe, right?
SPEAKER_00Interesting.
SPEAKER_02Um, we make choices about who we take care of and we make choices about who we neglect.
SPEAKER_00So, in reading the book or this work that you've done, what really uh helped me is to understand that between humanities and public health, what advice do you have to our listeners who are mainly global health professionals about how this complementarity could enhance the impact of their own work?
SPEAKER_02It's a beautiful question. Uh, I think people really understand stories about people. And that is the entry point to understanding the larger conversations and the larger concerns. I would say it's even the entry point to understanding the data fully, or those human stories. I would say that's true when from the perspective of wanting to reach people and wanting people to understand the work that you're doing in public health. I would also say maybe talk to the other side of the conversation, which is like, what does it mean for someone who's working in public health to either start writing stories or poetry or you know, documentary video? I think that um, and again, this is I'm I don't work in public health. So this is my observation as an outsider, is that the work is very intense. The work can feel very urgent, is very urgent, can also be insular. You're often talking with one another, with others who know about your field. And so I think that taking the time to pause and allowing even yourself to connect with what is the narrative of the work that I'm doing, I think that can be very powerful in giving you like an opportunity to look at your own work from a different perspective, right? One that's not necessarily driven by what you learn to do as a public health person, right? Um, but like, how does this connect with the human condition? How does this connect even, you know, even with your own heart and with your own work, you know? I was remembering that when I started this process, there was um a doctor that I had interviewed who uh I was trying to hoist meaning onto her own life, you know, and I was like, why did you get so involved? You know, tell me about your life. And she was like, No, nothing about my life. But, you know, in fact, she is someone who grew up with a single mom. She's somebody who understood what it was like to not have, you know, uh as so easily, you know. She understood neglect, I think, in a very particular visceral way. She cared about people because of the kind of I think struggles that her own family faced. And that was like a beautiful part of her story. And I think like it adds another dimension, and it ultimately that actually does bring other people into it as well when we understand what are some of those emotional ties. And I've met, again, I have to say, I've met many people in medicine and science who are like science who are like, no, no, no emotional ties, nothing. I, you know, even entomologists, you know. I did this because I've always been fascinated with bugs. And I'm like, take me back to when you were a child. What made you so fascinated with the natural world? It's like, I think there's another layer there, you know. So I think telling stories, we're not only telling stories to others, we're we're telling stories for ourselves as well.
SPEAKER_00Thank you, Daisy, for joining us today and having this fascinating uh conversation.
SPEAKER_02Thank you for having me. I really appreciate it.
SPEAKER_00Daisy confronts Chaga's disease not as a public health study, but as a human story. By speaking to a vast range of experts and people affected by Chagas across different health system settings, Daisy's book paints a comprehensive picture of a disease through its multiple realities. Daisy's approach and influence can inspire us, those working global health, to go beyond our public health silos and to present our work in a way that motivates expert policy and lay audiences towards greater action. To learn more about our dialogue series and the content of this episode, visit the episode webpage where you will find additional readings, show notes, and translations. Don't forget to get in touch with us via social media, email, or by sharing a voice message with your reflections on this episode.
SPEAKER_01Global Health Matters is produced by TDR, a research program based at the World Health Organization. Gary Aslanyan is the host and the executive producer. Lindy van Nieker and Obadiah George are content technical producers. Priya Joy is the curator of the dialogue series. The podcast editing, communication, dissemination, web and social media designs are made possible through the work of Maki Kitamura, Chris Kos, Elisabetta Desi, Isabella Sudatayao and Chembe Collaborative. The goal of Global Health Matters is to produce a forum for sharing perspectives on key issues affecting global health. Send us your comments and suggestions by email or voice message to tbrpod at who.it and be sure to download and subscribe wherever you get your podcasts. Thank you for listening.
