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This month at any months, to be here, to have a conversation with [inaudible] man this about her new book, the kissing bug.
A true, story and I have it right here too.
And I know she does because he [inaudible] two story of a family and insect and a nation's neglect.
[inaudible] which came out earlier this year.
So thank you all for joining us and thank you to those of you who already submitted questions.
We're also happy to take your questions live.
And I'll post them to these on your behalf.
So you can use the ask a question link below the video and we will include those questions as we go along.
So in addition to being Professor of Creative Writing here at Miami University, and my colleague, and being the author of the kissing bug, [inaudible] they feel loved.
This is also the author of the incredibly engaging, award-winning memoir, a cup of water under my bed, which I cannot recommend enough wonderful book.
Also the co-editor of colonize this young woman of color.
And today's feminism and of course, I also have [inaudible] also highly recommend it.
It's a book that's been widely used across campuses in gender and women's studies.
Courses and because I generally study scholar, I've used this in my courses.
As well and she's also the former editor.
Color Lines magazine.
And she has written for numerous other publications and programs, including National Geographic, The Atlantic, The New York Times, sleep, and NPR's All Things Considered and code switch.
So thank you.
They see so much for sharing your time with us.
Thank you, Christina.
You for spending this time with me and thanks to you.
Dlm alumni So for the invitation to it's exciting to be here So maybe to start off, I know we're probably gonna have lots of questions we already had some submitted, but I want to start out.
This was such an engaging book to read for all of us, who write it and who will read it.
And this book is very much about a specific disease.
Yet farm completely being simply being a documentary about the disease, it's also, I found a really deeply engaging, personal book.
So we learned some about the family relationships that lead you to do this research in your previous book, a cup of water under my bed.
So can you share with us a little bit about how your family relationships inspired you to this work.
And the impact.
The disease that you focus, on your family and on your understanding of how families are impacted by diseases.
So this book, it is about [inaudible] as disease, which is a parasitic disease.
I first learned about it at home with my family because I had an aunt who was diagnosed.
With this and there was of course, when, you know, it's like five years old, no one is explaining infectious diseases to me or anything about zoonotic diseases.
So but at that point, what my family the reason Miami was talking to me about it is because they were relying on me to actually interpreter or translate from my auntie and my other family members.
I grew up in New Jersey just outside New York City.
Very typical and traditional immigrant family.
My mother's side from Columbia, my dad's side from Cuba.
And my auntie was very fortunate to get a diagnosis, but didn't necessarily have the to communicate.
So at a really young age, I was actually talking about this disease even though I didn't know what I was saying, I was just translating what I was learning in school of English.
And what ended up happening is, that I grew up, you know, my whole life.
I grew up pretty much in the shadow of this disease.
My auntie was in the chronic stage and I'm going to explain a little bit more about the disease, but I just want to share about how I was what knowledge I had while I was growing up, which is, we thought, it was a very rare disease.
We knew.
She was in this chronic stage that we I thought my auntie would live forever, just kind of managing the symptoms.
It was really.
Just if a called there were years when she was hospitalized for weeks at a time, sometimes for months at a time.
And then there were years that were really good that she did really well.
She actually was able to get her teaching degree here in the United States.
She ended up teaching Spanish in the public school systems.
Inaudible New Jersey, she ended up going on to get her master's degree in the Spanish language.
She had a really amazing life.
And then there would be these years where she would need surgeries or she would need to be hospitalized for these extended periods.
And so many years, I was in my 30s when it was quite a shock to us when my actually ended up dying from this disease.
And it was really in the wake of that loss.
And trying to understand my grief that I realized how little I knew about Chavez disease and the nickname is is kissing bug disease in the so that's part of the title because it's a parasite.
That's transmitted by trial TO mean insects, which are nicknamed kissing bugs in English and in Spanish, they have lots of other nicknames as well.
But when I started researching, I realized, oh my gosh, I thought it was really rare and there's actually 300 thousand people in the United States who have shown is disease.
They just happened to be like my auntie, right?
They are immigrants from South America or Central America or Mexico.
They often lived in rural communities or had a lot of contact with rural communities, which is how they came into contact with these insects.
[inaudible] as disease is a little bit like Lyme disease, which I think is what most Americans are familiar with your You're not going to get it from hanging out in a room with another person.
You're going to get it from.
Most often from having direct contact with the insects who's infected.
And it's just, it's kind of like sort of like mine defined disease in some ways is parasite.
And once you're infected, you don't necessarily always have.
To get your attention.
So my auntie, as far as we know, never never knew that she had actually been infected.
And that's because in those first eight weeks when in the acute phase of the disease, you might feel fatigue.
You might have a swollen eylid actually where some of that parasite material got into you.
But other than that, there's not alarming signals that has happened to you actually, and so a lot of people just don't know and never actually end up getting diagnosed and then the parasite can actually live in your body for up to three decades before you write to experience symptoms looks like.
Years of having this parasite in your system and not necessarily knowing that anything is wrong.
And the parasite generally attacks the heart muscle.
It can also attack the gastrointestinal system, which is what happened for my auntie.
But for most people, the parasite will go after the heart.
And about one in three people end up.
These cardiac complications as a result.
And so part of like even in the wake of that loss of my aunty, and realizing that there were so many families here in the United States.
And then of course, in the Americas, [inaudible], about 6 million people who have this disease.
I realized there was no book about.
And there was very little material very few stories for a lay reader, like many of us are, you know, I think, now because of COVID, many of us are much more literate in terms of science and medicine.
We've all become like little bit of experts, but there wasn't.
Any book about this disease that I felt like could release feet to a wide readership.
And I really wanted to know who were these other families because while my auntie was alive, we really thought she was the only person who had [inaudible] disease.
And so part of working on this book was like, I'm going to travel across the United States.
To find these families and I did.
I found doctors very much working as advocates for their patients who then connected me with all of these amazing families who gave many hours of their time to talk with me about the disease and about how this has impacted their families, including something that I probably one of the first aspects of this disease that I learned that was really shocking to me was and there's a congenital form of this disease has so similar the Zika virus, the parasite can pass from mother to baby during pregnancy.
And we don't screen for that.
United States, we don't have guidelines for doctors to follow in terms of who should be screened for for congenital sharpness disease.
And so one of the patients that I write about in the book, Janet and her husband, Jose, ended up with their baby, born infected with this disease and her babies actually very lucky.
Because he showed some symptoms and they had amazing doctors and they were able to get a diagnosis and get that baby treated because this disease, once it's in that chronic stage for adults, does not have a cure.
We don't have a cure for this parasitic disease.
But for children we do have medications.
That seem to, to act as a cure, these medications seem to be really effective in children.
And doctors don't know why it's effective in children, but not adults I think all of us now with COVID can appreciate just what an incredible process it is for scientists to figure out all these details but if we did screen for babies and we have as many as 300 babies in the United States born every year, is disease.
If we screen them, we could actually get them treated so that thirty years later they're not facing your regular heartbeats and needing your cardiac interventions and even heart transplants as well.
So that's kind of what got me started and ended up taking me all over the country and also I went back to South America to interview my family and other families.
There as well.
[SPEAKER] So following up on that, as you just mentioned, also currently, so much of our lives and our family lives are about COVID.
We've been living in this pandemic.
A while, but as you also point out, and you're pointing to this about, you know, who's affected by this recurrence for South America from other places as well racial and class disparities in health care really go beyond COVID-19, even though that is of course what we're focusing on mostly right now and these have a long history so can you talk to us a little bit more about why it's important to understand that there are these other infectious diseases like Chavez that really do deserve attention and education and prevention as you were mentioning, and funding.
Even now as we are so impacted by this, current pandemic.
[SPEAKER], it's, there's so, many ways to go about thinking, about this topic, right?
And sometimes I like to remind people, okay, let's.
Talk about the money just straight up.
The money like whittling, you know, because that's a that's a huge part of how our healthcare system functions, right?
There's a profit element that's not there was an incredible economists who looked at just congenital Chagas disease, right?
So just this one parasitic disease is one aspect of.
It and what she found like that.
And treat babies and also give medication to the mom.
So that the parasite load in their body is lowered.
We it ends up being like ten times cheaper.
More effective, more financially efficacious and they say, to do that than to wait for this disease.
To manifest decades later where then you have to have defibrillators, you have to have heart transplant, you have to have some really serious interventions later.
So just from a cost perspective, which I know people sometimes when I start off on the humanitarian angle, people end up going to the finance and I'm like No, actually is cheaper, But I think the reasons that it's also sorry.
From a larger perspective is that the way we think about these diseases really affects public health policy know how we go about thinking about public health in this country.
So one of the conclusions that I came to work and I worked on this book for seven years.
So I feel like I should say that, you know, interviewed over.
You know a, 100, people at families, and experts in different, in different fields.
And the conclusion that I actually came to, and this was, before COVID I was done, writing.
Actually the entire book was written with and was done.
I was handing it to my publisher as the pandemic was being declared.
But after working on it for the seven years, I came to this conclusion.
That we have really had a policy in terms of public health That's about containment rather than eradication.
So that infrared radiation is not like quick and easy and can't be done we do settle for containment, right, just have to look at something like tuberculosis a lot of people in the United States never think about tuberculosis.
It is like not a part of their lives.
And where do you find it in the United States.
You do overwhelming find it in immigrant communities.
You also find it in communities where people have spent time [inaudible].
Shelters are in the prison systems.
Get living but why do we also find it so much in the immigrant communities in the United States, because we never made that policy though, those treatments we never made them available across the world in a way that sustainable, right, So yes, so now we have strains that are resistant to the medications that we have.
We never really era.
Didn't make a full commitment to that.
And the same I would say with HIV and aids, many of us do not think about HIV and Aids, and many of us think of it as a problem that has been solved.
It is an epidemic.
And where is it an epidemic in the just, in the United States.
But a lot of times we think about other countries with HIV.
But it is, a huge, problem here in the United States, in the South, in black communities, especially among men, having relationships with other men.
But again, it's contained to that community.
So that's kind of the conclusion that I came to after seven years of working on this book.
And so when COVID hit, it, had to tell you it was.
Really jarring to see a lot of what I had been witnessing with Shonda, brick, tuberculosis with HIV, these kind of this conclusion that have been coming to then see it with COVID just even early on to see the testing sites were more likely to be in white.
Wealthier communities.
Everywhere from Texas to New York City.
And journalists going out into these communities, figuring out, Wait, where are the testing sites being opened up in these particular communities?
So i think that's something that's important for us to think about, you know, because I hope COVID has really underscored for many of us that like we're all in this together, these communities of care.
It is not it's not it's not in our own best interests if we just want to think about it from a selfish perspective, to only take care of one small community or to only take care of one of the country, or even just our own country, right?
Like, you know, it's public.
Health to be global health?
I love hearing that because yes, public health, It's never separate from all these racial and class disparities and gender disparities that you talk about in your book.
And you were just talking about.
So and clearly we have so much more to learn about Chagas and about these.
Diseases and that's really important.
Do have a question that was submitted along the lines of getting more information about where can we find the kissing bug?
And is it present in the Midwest?
So can you tell us a little bit more about where we can find this and a little bit more perhaps about how the disease was transmitted.
I can and I also want to tell you that it is really just wild to me that I am here talking to you about insects because as I write about in the book, when I began this project, I was terrified of all insects, anything that crawled through the world, really E3, to me.
And yet I got over that and work my way through it.
I right about that in the book, in part because I wanted to learn more.
And one of the elements that was really surprising to me was that we do have these insects in the United States.
So kissing bugs or insects generally found in the South, the south the, and all over California.
However, they are being documented going further and further north.
In the United States.
But historically where you're going to really find them is in the south southwest, because they like a certain temperature.
They don't like it too cold.
It only gets too hot.
Are very goldilocks kind of insects.
And insects do function differently we have a different relationship with this disease.
In the United States.
We do not worry about getting Chavez disease from the insects here in the nice as much.
And the entomologists aren't quite sure why that is part of it might be the insects themselves.
And just how these insects are able to transmit the parasites in the US versus in other parts of the Americas, some of it might just be the level of exposure, you oftentimes have to have repeated exposure to the insects and many of them that increase your just reasonably like that's going to increase your chances of being infected.
And in.
The US.
So in the US.
Lot of communities do not have that kind of exposure to many, many insects repeatedly to these particular insects repeatedly.
And we also do have a lot much easier access to pesticides.
You, we can go over to the Walmart and buy something that will kill pretty much everything in our backyard, essentially, right?
I'm being a little.
Silly there, but we do have much easier access to pesticides and other kinds of insecticides.
And you know, and that's said, I always tell people, especially if you're in Texas, the Southwest, the South, different parts of California.
You know, the Defense Department.
So the US military has had to think about Chagas disease.
And they had to think about these insects.
Because the Defense Department has its headquarters for better narrow care for military dogs in.
And so what they meant it up.
Another part of this disease is called canine shot.
Which means that our dogs can pick up these insects or inspect.
Be bitten by the insect as well.
And become infected.
And they can have like a similar situation where they end up actually having cardiac complications, even dying from canine Chagas disease.
And the military has figured out that they had dogs that were actually infected, dogs that had died from this disease.
And so.
They have had to go.
And this is from interviews with people who work for the military they've.
Had to go around the outdoors, kennels and make sure that those are sprayed with insecticides they've had to cut back the brush to make sure that these bugs they're not, terminal insects, so they're not going to come and say hello to you during the day.
Going to wait until you're sleeping.
And then that's when they're going to be sort of creeping and crawling out to get to you and or to your dog.
So I always tell people to like, you are in these parts of the country and you have dogs that you keep outdoors.
Make sure that you're treating the candle, make sure that you're treating around your porches and that you're also that brush.
And you also can hop online and Texas.
And M in College Station, they are the leaders on Chagas disease in the United States and they have put together a really amazing guide for anyone who's in those parts of the country that might be afraid of having contact with the insect.
And bug repellent when you get out there to do your camping and I know some people are like my sweetie, they don't want to put on bug spray.
Bug spray is your friend.
You do not.
And I can say this because someone who did not end up in the book, but who I interviewed and really appreciated her story.
She went camping with her family in northern California.
And she got infected by an insect native to California.
During this camping trip.
And it's a very arbitrary, you know, it was like a few nights of campaign.
Her children were not infected, neither was her husband.
She ended up for whatever reason being the one who ended up infected.
So bug spray and as much cover as you can have if you're doing outdoor stuff.
Is that what you want to do.
And could be able to learn all that as I was reading this and then hearing the something that's right, It's everywhere yet we don't really know enough about it.
So I have a couple of things that you brought up.
I had wanted to ask you a question and you said something, so I'm just going to post both and you can decide.
But first of all, you know, based on your research, you've done, you've interviewed so many different people.
Hoe you decided which stories to include and which not to but first he know about the doctors.
And the knowledge that they have.
[SPEAKER] Historically doctors in the US have not known about this disease because they really thought of as a disease that would only be found in South America or Central macro Mexico.
You know.
Unfortunatley, we're not thinking necessarily about immigrant communities in the United States.
So historically there's been very little knowledge.
The part where that also becomes really painful is with, with specialists and gynecology, obstetrics that they know so little as well And so that has begun to change actually just in the seven years that I was working on this book, I did start to see that change in terms of at least Chavez disease being on the radar.
I guess is what I would say.
Of doctors.
The CDC has also been funding a lot more educational programming by went to a pretty incredible Symposium in New York.
City at a medical school there.
The only challenge that I continue to see or that I can anticipate in some ways that pretty much everyone in that room was an infectious disease specialist.
But immigrant communities in the United States.
And I can say this from my own family.
We never knew that there was anything.
We did not know about infectious disease specialists.
We did not know the whole process of you have a primary care doctor that gets you to these other specialists, right?
That was something that we had to find out.
And so part of what I can see as challenges is that more doctors are learning in their field.
And infectious diseases, which is., that needs to happen.
But those are not the first doctors that immigrant communities will come into contact with.
They'll first come into contact with either a primary care or a doctor working in the emergency room actually, because a lot of what ends up happening with people that I interviewed is that they end up having these irregular heartbeats that become really intense.
And they end up in the ER.
A lot of times, even if they have access to health care through the Affordable Health Care Act, IT's important to remember that actually before Obamacare, Latinx communities in the United States where the least ensure community.
So that's made a huge difference.
But even when they have.
People don't necessarily have the kind of work lives where they can take off the morning to go doctor about a little concern, right?
They sometimes, don't even have transportation.
Some pieces that I talked to had to pay significant amount of brand or a family member.
These are not unit, these are people like my parents who they don't have.
It, the Uber app on their phone, they don't even have a cell phone, right?
Or they have like one of the old school phones is not the smart phones.
So there's a lot of barriers to getting to that specialist, actually.
So I'm hopeful that as this disease starts to be more on the radar, that it's going to be on the radar of doctors who are working in emergency rooms are working in community health clinics as well really directly with these immigrant communities because that's a huge barrier and.
Then yes, you asked about the research.
It is.
You work on a book for seven years.
So not.
Everything that you find is going to end up in the book.
I was very lucky that I.
Had already worked for many years as a journalist before I came into higher education.
My, first career was in journalism and publishing.
And so I already knew that if you want to write, and I say this to my students all the time now, I'm, you know, I'm telling them that they're writing these 800 word essays in creative nonfiction.
And I'm always like work.
The 800 words and I'm always telling them, no, you actually want to have like 2 thousand words, and then cut it back to 800 and from a journalism perspective, you need enough material for 3000 words when all you have is 800 words, you know.
So I was lucky that I knew that I had that kind of very fundamental knowledge of journalism.
So in terms of transferring it to a book, I knew that I basically needed material probably for three books.
So that I could have, you know what I actually needed for this book.
But it was different.
It was difficult, especially there's a whole part of the book that is the patient stories is these.
Experiences from different patients across the United States?
And I had to make some really hard decisions and and part of it was some of it was actually the patients themselves, how much they were willing to share with me because in order to write a book like, this isn't this isn't this realm of.
And specifically literary journalism.
So it wasn't only the who, the, what the, when, the where, right.
I was asking patients.
That day before you got to the emergency room, like what were you wearing?
What were you thinking about that morning?
What what were you what was.
On your mind?
What what did you pack for the trip that you took that particular day on such I was asking them to sort of minutiae of their day-to-day lives.
So some of it really depended on the patients themselves and how willing and how open they were to spend time with me trying to remember showing me photos.
So the mom that I spoke about before, that was like a big part of our interviews and our interviews happened over the course of about two years.
So they were really spaced out, right?
And it included her pulling out photos from that day when she ended up in the emergency.
When she was bleeding nonstop and what a horrific day that was.
And I'm having to like make some very difficult decisions about how slowly or how quickly I'm going through the interview process with her, because this is asking someone to re-experience of really, really painful moment from her life, Right?
But I'm also asking her to show me photos.
So some of the decisions where really based on the patient's and then some of it was also deciding, you know, what was, most necessary for a reader to really understand the full scope of this disease.
So one patient that I include in the book is someone.
Was born and raised in Texas.
She has barely traveled outside of the state of Texas and she ended up infected, with shock as disease from insects.
They're in Texas.
And I thought, okay, that's story was really important to tell because it really underscores that although this is not We don't have to worry in the same way, that CDC has only found a 100 people who have been infected with insects that are native to the United States.
Even though it's not this huge regime problem, it does happen.
And I wanted readers to understand and to appreciate her story and those other 100 people who have this experience.
And then I also included stories of people who one patient, who got to the point where the different relater is, we're no longer working.
He needed a heart transplant actually, and I thought it was important for, for readers to see the scope of like, you can live with this and the chronic stage.
And actually be fine.
Not have health complications like this woman in Texas, like some others, but then there's another patient who on the other extreme ends up needing a heart transplant.
So the decisions were like, you know, how much they willing to share with me and then also like what I felt like the readers also needed to understand the scope of the disease, but it's very.
Right In the acknowledgements, I have a lot of thank you's to people whose whose stories I couldn't include.
Sounds like you clearly spoke with so many different people and I love how you said that we need so much more material than what actually goes into a book because I think often reading books, we don't realize that at that point.
So want to mention, we've seen one comment for.
From Connie H.
They see I've learned to become friends with bugs, especially spiders, and join your talk very much.
I first heard you on NPR and I want to make sure we invite everyone again to please submit your questions if you have any for us.
So they can address those.
And along with that, you know, you mentioned how long it took to write this book.
Haven't you?
So I'm assuming part of this time you were here at Miami and so I'm wondering if you can tell us a little bit about how that worked.
Being a faculty member here at Miami, working on this book with that process was like,.
[SPEAKER] Yeah, it was incredible.
Actually think when I arrived at Miami, I had been working on the book for about a year, a year and a half or so.
So most like printing it.
All my work happens well, as here at Miami and it was incredibly supportive.
First of all, because you know my colleagues were really interested in what I was doing.
I think.
Sometimes people think that some of these people have this image that writers, you know, go off into this little room for seven years and then they come out with the book.
It does not work that way actually is especially in non-fiction.
We actually need to be in connection with others and to feel supported and boy, bye, by others over the years.
So I really.
Appreciated the support my colleagues I had research funding as well, so that I could make those research trips across the country and be able.
To not always necessarily be crashing on someone's sofa.
Like sometimes I got to and sometimes there wasn't a sofa to sleep on, so the research funding made a huge difference in terms of being able to do that, traveling, being able to also go to South America, be able to interview both families and also there and to be able to appreciate their knowledge, their so yeah, the research funding was huge.
And then also I teach creative nonfiction.
And I always have a literary journalism component or section to my courses.
So it's been really wonderful.
I'm usually introducing students to that height.
Of writing.
And so it was really great to be able to say to them, Yes.
I'm interviewing someone.
I'm asking them to show me photos of their lives.
I'm asking them about the whether I'm going online to match up what they're telling me with what I can find in terms of they told me that day was sunny.
Yes, I am online trying to figure out if that day that time of the year was really sunny or how hot it was.
So also like that actually is such a wonderful, I love that we have had that we have this research or this, scholar teacher model at Miami because they really do reinforce one.
Another and so a lot of times.
You know, when I