Daisy Hernández, THE KISSING BUG
New York Times journalist and author of the memoir A Cup of Water Under My Bed, Daisy Hernández, joins Zibby to talk about her latest book, The Kissing Bug, which was inspired by her own family’s story. After watching her aunt endure a painful yet unnamed disease for decades, Daisy spent seven years researching and uncovering the facts of the invisible Chagas disease. She shares how weaving together investigative reporting with her own memories was not only important for her personal grieving process but essential to so many readers who have been touched by this under-discussed illness.
Transcript:
Zibby Owens: Welcome, Daisy. Thank you so much for coming on “Moms Don’t Have Time to Read Books” to discuss The Kissing Bug: A True Story of a Family, an Insect, and a Nation’s Neglect of a Deadly Disease.
Daisy Hernandez: Thanks for having me.
Zibby: It’s my pleasure. Daisy, you are a beautiful writer. I know that you know this. I know you’ve been a reporter forever and a journalist and The New York Times all the rest. This was, from the first sentence, beautiful, gripping, great story, really beautiful. Thank you for that.
Daisy: Thank you. I appreciate it. We need readers.
Zibby: Yes, readers. I know it’s called The Kissing Bug, but it’s a family story as well. It’s about your family and your experience and culture and identity. It’s about a lot of things. You could also call it — not that I’m in your marketing department. You weave in a lot of facts and figures about an under-the-radar disease that lot of people don’t know about. The way you paint a portrait of the people, the women especially, in your family, it’s just really beautiful. Why don’t you tell listeners your take on your book and what it’s about and what inspired you write and research and all that stuff?
Daisy: The Kissing Bug did start with my family because one of my aunties who was basically like a mother to me, my Tía Dora, was diagnosed with Chagas disease when I was very young. I was translating for her. I was the first person in my family who was navigating both languages, learning English in kindergarten, and so interpreting for my auntie without really knowing what I was interpreting, the way that often happens in immigrant families when immigration crosses with the medical care system and everything else. This is a chronic disease. It’s a parasitic disease. This is nothing that I knew growing up. We knew that it was chronic, that there wasn’t a cure, that my auntie was going to have this all her life. I also didn’t ever think that she was going to die from this disease because I just knew her as having been sick her life that it almost became — it was a part of our lives. Some years were really good years. Some years, she was hospitalized for several weeks, sometimes for months. She had different surgeries on and off. We never met another family who had any knowledge or awareness of this disease. It’s called the Chagas disease, sometimes called, also, the kissing bug disease in English. When she died, it was several decades later, actually. It was quite a shock to me that she passed away.
We had a complicated relationship, as you’re alluding to in the book. We had a lot of love and a lot of misunderstandings, anger. My auntie really had a hard time accepting that I was queer. I think she really thought of me as her daughter and really wanted me to have the sort of American dream that she had, which did not include any queer people in it, unfortunately. We had a very loving and also painful relationship, I think is the right way to say it. It was complicated to me that I had so much grief when she died. Not only did I have grief, but I realized that I didn’t understand what this disease was. I just thought it was very rare. As I began to research, I found out, oh, my gosh, there’s three hundred thousand people in the United States with Chagas disease. Those are all people who are like my auntie. They’re immigrants from South America or Central America or Mexico. This is a parasitic disease. It’s transmitted by a kissing bug, or a triatomine insect. That parasite can live in the body for many years, even up to three decades, very silently before it starts to attack the heart. Predominantly, it attacks the cardiac system. For people like my auntie, a smaller number, it attacks the gastrointestinal system. That’s why she was having a bunch of surgeries and getting treatment over the years.
It’s been a neglected disease because it does disproportionally affect not only immigrants in the US, but in terms of Latin America, there’s about six million people who have this disease. Even within Latin America, these are people who usually are coming from very poor communities, rural communities where they would have contact with this insect. This is not a community that has that many people advocating at their behalf and who don’t necessarily have resources. It’s oftentimes called a silent and silenced disease in the sense that this is not like Ebola. This is not super visible in the body. It’s also not COVID. It’s not like the flu. It’s not transmitting very easily between people, so it really gets contained to this community. It’s a little bit more like Lyme disease where you have to have contact with an insect. I realize, oh, my god, how are there three hundred thousand people in this country? Who are they? Are they similar to my family? Are they really different? I tell other people, be careful what you start to research because you will go down that rabbit hole of wanting to know more and more. I did. I ended up finding families and finding a few doctors in the United States who were becoming advocates for their patients. It turned out to be a seven-year journey of researching, interviewing, traveling across the United States, and also traveling back to South America. I had another auntie who I did not spend much time with because she stayed in Latin America but also was infected with this disease. Talking to my cousins about their mom and losing her at such a young age was really eye-opening for me. It was quite a journey.
Zibby: Wow. Then were you doing your job at the same time? Was this a passion project on the side? How did you weave this into life?
Daisy: I love these questions, logistics.
Zibby: Sorry.
Daisy: No, these are my favorite questions. I love asking people this. I love being asked as well. I was actually transitioning from publishing into teaching in higher ed. I was doing an MFA program. I was writing, actually, a short story about a little girl whose mother had Chagas disease. I realized, wait, that little girl is me. What I was writing was very fictional, but I realized that it was a story about me and my auntie. I was actually starting this book project as I was starting a career in higher ed. What was interesting was that a lot of times, I was like, I’m going to this place for a job interview. Oh, I also get to interview someone there in that area. It was craziness. Then I did end up starting in higher ed. What was really great about that was that I did get research funding. I got several thousand dollars from my college to be able to go and travel and do interviews. People ask me, how did you make time for this? How did you get funding? I’m like, yes, I was subsidized, in some part, by my college. I would’ve done it on my own, but it would’ve definitely meant using up savings to do this. I’ve talked to other people who do this kind of literary journalism work. We’re always double-dipping. You go to one city to promote your last book. You’re starting your interviews for next book, which is a lot of what I did in Los Angeles. Then there were times when I definitely — before I had the funding from my university, I was just using my own money because, as you’re saying — I never used the phrase passion project. This was more like, I had to do it. The writer Octavia Butler has this beautiful essay about positive obsessions. This, for me, was a positive obsession. I would’ve done it either way. There’s a reason it took seven years and not two. I was teaching. I was juggling life, those many hats that we women wear.
Zibby: I didn’t mean it in any sort of negative way to say passion project as if it was some fluff thing on the side. I hope you didn’t take it that way.
Daisy: No, I didn’t at all. I realized, oh, I don’t actually use that word. I’m like, what wording do I use? Oh, yeah, I use positive obsession.
Zibby: Positive obsession’s a good one.
Daisy: If you haven’t read that essay by Octavia Butler, I so recommend it.
Zibby: I have to. Okay, I’ll go do that.
Daisy: One of my favorites. We have to get crazy about the stuff we love. Otherwise, it doesn’t happen.
Zibby: Yeah, it doesn’t happen. You need that fuel, though. Otherwise, it’s not worth it. There’s so much competing for time and attention that if there’s not something really driving you, it’s very easy to say, no thanks, I think I’ll pass on that.
Daisy: I oftentimes tell my students, unless you are J.K. Rowling, no one is going to give you enough money for the many hours. When you hear about the novelist with the six-figure advance, I’m always like, trust me, that was not enough money for the many hours, the many years that went into that book. It has to come from that gut and the community, the moral support of having good friends and people supporting you when you’re like, why am I doing this? Am I crazy? They get you back on.
Zibby: I recently started a publishing company called Zibby Books to combat some of the frustrations that so many authors had. I have books at a number of different houses myself now. I say that so casually as if it’s no big deal, but it’s a really big deal for me. As I’ve dug deep into how to change that, there is so little money. It is so expensive to produce books. I did my first business model. I was like, ah, okay, so we’ll be losing money for years. This is great. It doesn’t make it better. There are lots of things stacked against the author. That’s all.
Daisy: A lot. I remember a friend of mine who used to talk about how much we have to educate readers — I really believe this. A lot of people don’t know that publishers, they have the books that do really well, and those support the books that are not doing so well or that have lower sales. Every time you buy a book, it does make a difference. As you’re saying, there’s a model in place to prop up the ones that don’t do as well. I think the editors that are really amazing and great are the ones that realize, okay, this is an important book. Even if it’s not going to sell as well as this other book, we still need this and have a commitment. Equitable redistribution of resources.
Zibby: Yes, totally. I’m not giving up on this, by the way. I’m looking for all these other revenue streams. I didn’t mean to leave it in a negative way. The purpose of some books is not to sell a million copies. There’s a formula. We’re getting totally off topic. I’m sorry. If you wanted to have a book that sold a million copies, you could probably approach it or analyze what books sell a million copies and why and then try to do something like that. Not that that would necessarily work, but I feel like that’s not why people write books. You want your book to do well, but people have to write books that they need to write. Otherwise, they could be doing anything else.
Daisy: Absolutely. Also, we don’t know what that formula is for that book that’s going to — if we did, we would have a really different situation. I was just talking with a student yesterday about House on Mango Street by Sandra Cisneros, which, millions and millions and millions of copies and international and so many languages that it’s been translated in. I’m like, what formula would’ve predicted that? You know what I mean? You look at these books that have become part of the canon from elementary school through high school and beyond. You’re like, I don’t think that someone could’ve predicted that. Then in other cases, you look at the kind of financial support that some books get in terms of advertising, in terms of how they’re being pushed out, and you’re like, of course, it’s going to do a little well, at least a little well because it’s getting so much support, not just the advance that the author is getting, but what’s being put into the marketing and how it’s being pushed and who’s talking about it. Also, again, readers, I don’t think, always appreciate, because I know I didn’t know this, is just how much informal marketing and publicity happens, who you know, who you’re at dinner with, who you’re talking about your books — I’m talking about people who are editors and on the publishing side, what books they’re talking — all of that is part of it. They’re getting paid for it, but you as a writer don’t know what’s happening there. There’s so many pieces to this little monster that we call publishing. It’s a beautiful beast.
Zibby: It’s true. If there’s anything that you think is glaringly obvious that you could fix that you’ve always thought, if only this, let me know because I want to try to incorporate lots of new ideas. Anyway, back to your book. How did your family feel about this, especially the queerness parts and even just the parts that reveal a lot of the physical struggle? Obviously, everybody’s fine with it, about your aunt and how she felt she was pregnant and her body and what that looked like and colostomy bag and just all these details of family life and illness and what you go through. What was that like?
Daisy: My family has not read the book because it’s in English. My family only reads in Spanish. I did not translate it for them because of my experience with my previous memoir, A Cup of Water Under My Bed. I did translate certain chapters before they were published. My mother didn’t really want to read it. I don’t come from a family that sits around reading a bunch of books anyway. They weren’t like, oh, you’re the next big thing, Daisy, or something like that. My mother, I think it’s hard for her. She’s somebody who, if it’s painful, why are we going to look at it? Why are we going to talk about it or consider it? At one point, I actually tried to read some passages out loud. This is from A Cup of Water Under My Bed. She started having emotions. She was like, “Okay, that’s enough.” Basically, don’t read any more to me. It just brings up sadness for her and a lot of feelings. With that memoir, I realized I’m actually writing for my specific family members, so I don’t have to insist that they read it, that they consume, that they interact with my work. It would be great if they did. It was a lot of acceptance. That’s just not the relationship we have. That memoir was translated into Spanish. I’m so hopeful this book will also get translated at some point into Spanish. That book was translated. My mother still didn’t read it.
My auntie read it, one of my other aunties, and argued about certain parts of it. She’s like, “That’s not true. That’s not the way it happened. It happened this way.” I was like, “Okay. No, it didn’t, but you’re entitled to think what you want. So am I. You write your memoir.” At one point, she did start writing her own memoir. I always tell people, if you think you know how your family’s going to react, I can guarantee that you don’t. I have just, over the years from different writers, heard so many reactions, everything from, I thought my family would flip out, to, actually, my family just doesn’t want to read it. We always think they’re going to be really fascinated. At one point, I had my sister read — this was my memoir — because I wanted her to basically be a representative for my parents and aunties who only read in Spanish. She was like, “Why am I not in it more? What happened to the chapter about me?” We also think our family doesn’t want to be in our memoir. No, our family might want to be in our memoir more, actually. Then you have to go grapple with that question of, do I want to write a whole chapter about this family member? You really do not know. My parents have largely accepted that I’m queer. If and when this book would get translated into Spanish, that wouldn’t be a surprise to them. I have no idea how they would react. I think they’re very proud of me. They see this as part of my work life, which is really so separate from the relationship that we have. They’re just like, oh, you did good work. That’s a really good thing. They’re definitely really aware because part of working on this book, what was so intense, is that as I was discovering more about the disease, so was my family. I was sharing this with my family. We did not know, for example, about congenital Chagas, which is that this parasite can transfer from a mother to baby during pregnancy like the Zika virus.
Zibby: I couldn’t believe that when you said that.
Daisy: We had no idea. My auntie tried to have kids but was never able to get pregnant herself. My family was learning as I was learning. They also learned with me about congenital Chagas, about the parasite being able to jump from mother to child during pregnancy like the Zika virus. I think my family did really deeply appreciate how much they were learning about the disease. Even in all those many, many years in the United States, we never had a doctor who explained to us anything about the disease. My auntie never saw an infectious disease specialist in the United States. She was basically being managed for the impact that the parasite had on her body but not actually working with an infectious disease specialist. We didn’t know. I had no idea. We all grew up without health insurance. We only saw doctors when it was an absolute emergency. People say, what are the barriers for immigrants who have this disease in the United States? The list is so long beginning with, do you have health care? Do you have access to health care? Also, even if you were to have health care, if you don’t know what an infectious disease specialist is, you wouldn’t even ask for it. You don’t even know what questions to ask to start with. There’s so many barriers across the health care system when it comes to immigrants and this particular disease, but also others. I got off track of your question, but it was a really good question.
Zibby: No, no. I didn’t know much about this disease before. I feel like your shining a light on it is going to help a lot of people. Maybe somebody tells somebody. Somebody somewhere gets diagnosed. All of that, this is how it starts. You have to get the information out there.
Daisy: I hope so. That’s what I think.
Zibby: When you’re not researching rare diseases, or not-so-rare diseases, what’s your life like? Are you still teaching? What are you going to do the rest of today?
Daisy: I am teaching, yes. What I am doing with the rest of my life is, yes, usually, I am — we’re almost halfway through the semester, which is really strange right now, back in person. What am I doing? I am grading student work. I am writing a recommendation for a graduate student so that they will hopefully get an award. I’m actually trying to dedicate one day a week to my own creative work because I really burnt out last year. COVID is messing up everyone’s time. I burnt out last year. I looked at what I was doing with my life. I realized I was working a lot of weekends. I was working a lot of evenings. My work had seeped into every corner of my life. I’m putting a lot of boundaries than I’ve ever had, probably, before. That is what I am doing. Then I also have a new puppy. Not a new puppy. I have a puppy who is new to me, I guess.
Zibby: I’m so bad at dog training. I am just the worst. I try. I read the things. Every so often, I have someone come and teach me. I just stand there. I’m like, I can’t stand here and do this exercise where the dog walks like five feet to me over and over. I have no patience. I’m just terrible.
Daisy: It is astonishing that any of us get to adopt dogs without us being trained. I’m like, oh, my god. My sister had a baby two years ago. That is crazy. They just let you leave the hospital with the baby.
Zibby: Babies, I feel like I have an instinctive — I know what to do with babies. I have a dog now, but I don’t even know. My first dog, I got from a pet store. I was like, how cute, and I bought her. I didn’t know what I was doing. It was terrible.
Daisy: I love it. I know what to do with the human baby. The puppy, no.
Zibby: I have no instincts, none.
Daisy: We always need community. We need people guiding us.
Zibby: Yes, very true. What advice would you have for aspiring authors?
Daisy: Oh, goodness. My advice is always what Toni Morrison said, which is that she wrote the book that she needed to read. That’s how she wrote her first novel. When I heard her say that, that has just stayed with me, inspired me. It’s kind of the touchstone. That’s what I always come back to. That’s always what I tell writers. What should you be working on right now? The essay, the poem, the magazine article, the book, the project that you need yourself. It does not work, it never works if you think you’re doing it for someone else. I come across writers who are doing the project that I think is going to earn them a lot of money. I’m like, there’s just not enough money in the world for everything they have to put into it. That’s always my advice. Get clear on what it is that you need. That will open doors. That will make things clear about what you need to say no to and what you need to say yes to, if you’re clear about what you need yourself.
Zibby: That’s good advice on a lot of levels.
Daisy: Yeah, it applies to other parts of life as well.
Zibby: If I just would take a minute. Awesome. Daisy, it was so nice to chat with you. Thank you so much for coming on. I know we didn’t even talk too much about this, but I had the best time chatting with you about The Kissing Bug, your True Story of a Family, an Insect, and a Nation’s Neglect of a Deadly Disease. Everyone should be aware of this disease and also read Daisy’s story. Thank you.
Daisy: Thank you.
Zibby: Take care. Nice chatting with you.
Daisy: Bye. Have a good one.
Zibby: You too. Buh-bye.
