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Episode 41

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The Gray Area


To what extent are we our genes? What happens when we inherit what feels like a life sentence?

You can read a Spanish transcript of the episode, it’s useful if you’re learning the language with this podcast.

Or you can also read an English translation: We want you to fully understand our podcast.


Transcript

Translation: Patrick Moseley

[Joshua Johnson, host of 1A ]: Hi there! I’m Joshua Johnson, the host of 1A. Every weekday people gather here to speak freely. You may hear some things you don’t like, you may learn something new, and every Friday we review the week’s top stories in our Friday’s News Roundup. You’ll find the 1A podcast on the NPR One app or wherever you listen to podcast.

[Daniel Alarcón, host]: Welcome to Radio Ambulante, from NPR. I’m Daniel Alarcón.

This story starts with a notebook that our producer, Luis Fernando Vargas, kept hidden in his closet when he was 9 or 10.

[Luis Fernando Vargas, producer]: It wasn’t a diary. I mostly drew in it. They were horrible, really ugly drawings of superheroes.

But I remember every now and then, on the corner of the page, I would write a sentence or two. Really direct things with a strange childlike naiveté. Phrases like “I want to die,” “I’m nobody,” “I don’t deserve anything.”

[Daniel]: Luis Fernando lives in Costa Rica and grew up with a traditional middle-class family. He told me that he always had a peaceful home, even too peaceful, with two responsible loving parents and a brother who’s quite a bit older than him who’s always supported him…  

[Luis Fernando]: It was a privileged life, honestly. But still, as long as I can remember, sadness, depression…have been a constant in my life.  

[Daniel]: Like many people, Luis Fernando goes through periods when he can’t even get out of bed. Months in which going about a “normal” life is nearly impossible.

So, two years ago, Luis Fernando started going to a psychologist and taking antidepressants. He had fallen into a serious depression.

[Luis Fernando]: In therapy, my psychologist told me that I show signs of generalized anxiety. I get stressed for no clear reason. Irrationally. From just existing. I have broken three teeth from grinding my teeth. I bite down on my jaw just out of anxiety.  I’ve hit my head against the wall until I passed out because the idea of being alive became unbearable.

It’s a daily struggle: Excessive worrying and obsessive behaviors. The egotism of feeling that everything wrong in the world is my fault and only my fault. Self-hate. Every single day.

[Daniel]: One of the first questions they asked him in therapy was if anyone else in his family experienced the same problems. They explained that these kinds of issues tend to have a hereditary component. It wasn’t a strictly scientific conversation and his psychologist told him without putting much weight on it.

[Luis Fernando]: But the fact that it could be hereditary was stuck in my head. And I obsessed over it. Looking for patterns. Looking for someone in my family who had similar behaviors. Someone who showed signs of mental illness. No one has a diagnosis, as far as I know, but people don’t normally talk about these illnesses very often, and they usually stay hidden.

Maybe I was looking for an explanation. Or maybe I was looking for relief from my guilt. I’m not like this because I want to be, but because it happened to me. And that way I could blame something else. Something in my genes.

[Daniel]: But then: To what extent are we our genes?

In other words, to what extent are we determined by them?

Is it possible to escape what we inherit in our blood?

[Luis Fernando]: A little while ago, I met someone who was also asking these questions.

[Jetty Raventós]: Hello [laughs]. I’m Jetty Raventós, Henriette is my official name and I work…

[Daniel]: And Jenny has dedicated a large portion of her life to looking for an answer. Luis Fernando will take it from here…

[Luis Fernando]: As a child, Jetty’s favorite place was a small river behind her house in a neighborhood of San José, Costa Rica.

[Jetty]: There were tadpoles and I would put those tadpoles in little jars and look in the water with my brother’s microscope.

[Luis Fernando]: She could clearly see the changes taking place. How they started to form eyes and little feet…

[Jetty]: Everything was so boring in books, but when I did it and saw it really happen it was so entertaining.

[Luis Fernando]: And she was excited to see what was going on around her.  

[Jetty]: I wanted to learn about nature and understand it down to the smallest detail.

[Luis Fernando]: Jetty lived with her parents and her two older siblings, Ciska and Pedro. But she remembers being a girl who was separated from the world. Ciska was 7 years older than her and Pedro was 4 years older. Her relationship with both was a little distant. On top of that, it was very hard for her to make friends. She preferred to play alone.

[Jetty]: I imagine it was also a little bit to separate myself from…from my family situation, which was very tense.

[Luis Fernando]: Now we need to talk about her dad, José. He was a short, dark-haired man with green eyes. He was a coffee exporter, which was a very important business in Costa Rica in the late ‘60s. He was a man with money, who was recognized in society.

[Jetty]: He’s what you’d call a workaholic, right? So, he was always working on the weekend and I would go with him. He was very, very caring toward me.

[Luis Fernando]: Jetty would sit and watch TV with him.

[Jetty]: He would let me stay up to watch “Los Vengadores,” which was on Mondays at night, and I would sit on his lap. The two of us had a very special relationship. I was the most spoiled one.

[Luis Fernando]: But there were times he would stop being the caring father that Jetty knew.

[Jetty]: And he was really aggressive, with my brother for example. And my mother. He would get, maybe not physically violent, but very…very verbally aggressive. There were insults or he would get upset that food wasn’t good or because it didn’t look good…

[Luis Fernando]: There were dinners with shouting and broken plates. Those nights, Reneé, Jetty’s mom, would spend the night with her to avoid more fighting. Jetty and Ciska stayed quiet. Pedro, on the other hand, confronted his dad. Face to face. This, of course, made the atmosphere even more tense.  

The angry outbursts would happen for no apparent reason, without any clear explanation. Jetty didn’t understand why her dad would transform, all of a sudden, into this person who was so frightening to her.

There were stretches that would go on for days or weeks. Jetty doesn’t remember well. Periods full of anguish. Then, periods when her dad would lock himself in his room with the curtains shut, isolated from the whole family. And then, almost like nothing had happened, everything went back to normal.

Her dad came back. He was himself again, for no reason. And in that state of normalcy, his family didn’t say anything. It was like nothing had happened.  That was what life was like in that house. Volatile. Unpredictable.

When Jetty was 11, from one day to the next, without explanation, the whole family took a flight to Switzerland. When they got there, the first thing they did was take their dad to a hospital.

[Jetty]: And it was really strange because besides that my mom took us to skiing lessons, so it was like it was mixed with a vacation and it was all good. But on the other hand, my dad was being admitted to a psychiatric hospital.

[Luis Fernando]: Jetty heard that word, “psychiatric,” for the first time on that trip. But she didn’t understand it. All she knew was that it was a hospital and so she knew something was wrong. Jetty doesn’t have a clear memory of what the place was like.

[Jetty]: What I have is an image of a place that’s very dark and had bars on the windows, but I don’t know if that’s something I made up after the fact…

[Luis Fernando]: True or not, it was a horrible place for her.

They didn’t spend much time in Switzerland. A few weeks later they went home, since their dad had business and felt extreme pressure to take charge.

And back to their daily routine, their dad seemed happy. Stable. The fits of rage had stopped. He was in good mood. For a while, things were good.

On March 19th, 1974 , the same year as the trip to Switzerland, Jetty’s aunts and uncles went to have lunch at her house. It was the feast of San José, the saint, and since Jetty’s dad was named José, they celebrated together.

[Jetty]: And it seemed like he had too much to drink and so then he locked himself…in his room.

[Luis Fernando]: Jetty remembers trying to cheer him up. She understood that he was sad. At the time, she was learning to play the flute, so that day she went and stood at her dad’s door. And she started playing for him.

[Jetty]: I don’t think it cheered him up very much, but well, it was what I could do.

[Luis Fernando]: I didn’t work. Her dad didn’t leave that room for the rest of the day. The next day, he did leave, but he stayed away from everyone. And only on the third day, at night, he sat with his family in the living room for a while. And then…

[Jetty]: He gave each of us a hug and went to his room.

[Luis Fernando]: The next morning, Jetty and her brother went to school. At noon, one of their aunts came to pick them up. They headed home.

[Jetty]: And I knew there was some kind of emergency, so when she stopped to get gas to come here, I said: “What are doing? If we need to get home quick, we need to get home quick.”

[Luis Fernando]: When they got there, there were a lot of people.

[Jetty]: I was walking, pacing in the yard, feeling a little lost. I didn’t remember anyone having told me anything, but one of…one of the staff that worked in the house came and told me that my dad had died.

I knew he had killed himself; I don’t know why but I knew because…it wasn’t talked about. And I knew that when I went back to school, I had to say it was a heart attack. Because you…you couldn’t talk about suicide.

[Luis Fernando]: Jetty suspected it was a suicide because of certain comments she heard from her family. It felt like her grandfather was ashamed of his son.  

[Jetty]: He felt like it was more like a weakness in his character, you know, that he couldn’t handle life, in other words, it was a personal decision and if he had wanted he could have not had depression.

[Luis Fernando]: But what Jetty was feeling wasn’t shame. It was more like confusion. She was barely 11 years old and it was the first time she had experienced the death of someone close to her. She had never really experienced grief. And for someone as young as Jetty, death is difficult to understand. One night, a little after the funeral…

[Jetty]: I was setting the table and I set a place for my dad. Ssnce he traveled so much as a coffee exporter, so yes…yes I had that feeling that he was going to come back.

I mean, it wasn’t really clear that it was for forever.

[Luis Fernando]: But time passed and she realized that it was. It was for forever. A few years later, her sister got married and her brother went to study abroad. Jetty was left alone with her mom for most of her teenage years and concerning her dad, she did what her mom had taught her since she was a child: she said nothing.

She kept it deep inside. And didn’t let it come out.

That silence lasted 10 years. She was at college, studying medicine, when her best friend died in a traffic accident. Jetty broke down. And the grief she felt for her friend transformed into the grief she never felt for her dad.

She got to the point where a psychiatrist prescribed her antidepressants. She was 23 years old.

For the first time, she looked for answers from her mom and siblings. Answers about the trip to Switzerland, about her dad’s aggression. About his death. And she confirmed her suspicion: he had killed himself.

They told her the truth: her dad suffered from bipolar disorder, or manic-depressive disorder, as it was known at the time. He had been diagnosed before the trip to Switzerland.

That diagnosis was a revelation for Jetty.   

[Jetty]: Because as I child I felt like I’d been abandoned.

[Luis Fernando]: And it was at that moment she was able to understand that her dad had a medical condition. And that he had come to a point at which his life was unlivable, literally. A condition that he couldn’t find his way out of.

[Jetty]: And I think that that was when I jumped to the other extreme: this is a biological condition. Purely biological.

[Luis Fernando]: An illness like any other. Like diabetes or high blood pressure. Like cancer.

There weren’t many studies, but as is the case with many illnesses, it was believed that mental illness could be hereditary.

[Jetty]: On one hand, I was relieved of the pain of being abandoned, but on the other hand, I had this increasing fear that I had it too.

[Luis Fernando]: And that fear became practically unbearable when she had to take the psychiatric course in her curriculum.

[Jetty]: I would go to psychiatry and it would terrify me. I didn’t want to deal with it because it hit very close to home. So, no, I didn’t want to know anything about psychiatry.

[Luis Fernando]: Her fear was that what had led her dad to take his own life was in her blood, in her genes. That she had inherited it, like she inherited his eyes. It was at that age that the illness started to manifest.

And well, when you’re looking for something, sometimes you see what you want to see, not what’s really there. Especially when you’re looking in fear. An irrational fear is formed. A fear that connects anything to the thing you’re looking for.

[Jetty]: So when I was on my period I would get really irritable and I would interpret it more as, “oh, of course, the bipolar genes,” rather than progestin hormones at that time, you know? And yes, it was a time when I was really afraid that I was bipolar

[Luis Fernando]: It was like living under that threat of something that could strike at any moment. Out of nowhere.

Jetty graduated med school, married one of her colleagues and became pregnant with her first child. And a little later she started her master’s degree in biochemistry.

And it was an exciting time to study that because…

[Jetty]: People were starting to talk about the human genome project.

[Luis Fernando]: It was 1989. Several countries were planning to found a research institute to carry out one of the most ambitious projects in history: describing human DNA in its entirety.

And well, we’re going to try to explain it here in the simplest way possible.

DNA is a large molecule inside the nucleus of all of the cells in our body. You can think of it as a string that’s 40 thousandth of width of a strand of human hair. And if we took it out of the nucleus and straightened it out, it would be 2 meters long.

Imagine that tiny string of DNA is like a book containing all of the instructions for the development and operation of the human body.

This book is divided into sections called genes, like chapters. Human DNA has between 19 and 21 thousand sections, even though we’re still not very sure.

[Jetty]: The human genome project was something spectacular. If you look at the covers of magazines at the time, we were going to understand biology. We were going to understand the human body.

[Luis Fernando]: Any you may be wondering, what does all this about understanding DNA mean? Well, the idea that was most exciting to scientists was that they were going to be able to understand the mutations in the genes that caused all illnesses. Yes, they were talking about all illnesses.  

And so they would be able to know, with predictions and percentages, how at risk a person is to suffer some kind of cancer, have high blood pressure or kidney problems. And that meant being able to prevent that illness insofar as it was possible.

So the promises were enormous.

And they weren’t just promises.

In Costa Rica there is a kind of deafness that doesn’t exist anywhere else in the world. It’s known as “Sordera de los Monge,” Monge Deafness.

It’s a kind of hereditary deafness that’s passed from generation to generation in families in Cartago, a province of Costa Rica. People lose their hearing little by little until they lose it completely.

Jetty was part of a group that researched the genetic origins of this kind of deafness. And after searching for three years, they found where the genetic mutation was.

[Jetty]: And I remember I was jumping up and down by myself there in the lab! It was really exciting. It was one of those rare moments in science, but it’s what makes science so appealing too, because it’s finally finding something.

[Luis Fernando]: And with that discovery, they could tell the families which of their children had inherited deafness before it manifested.

For a researcher, nothing is more inspiring: seeing their work have a concrete impact on people’s lives…  

[Daniel]: But in a certain sense, all of this was a preamble to what was really going to be the most important research in her life.

We’ll be back after the break.

[Ad]: Support for this NPR podcast and the following message come from Squarespace. Need a website for your growing business? Customize look and feel, settings, products, and more with just a few clicks. Head to Squarespace.com for a free trial and when you’re ready to launch, use the offer code RADIO to save 10% off your first purchase of a website or domain. Keep dreaming. But make it a reality. With a website from Squarespace.

[Cardiff García, host of The Indicator]: How much would you pay to avoid morning traffic? Why are plane tickets to Boise so expensive? I’m Cardiff García, cohost of The Indicator. And every episode we take on a new, unexpected idea to help you make sense of the day’s news. Listen every afternoon on NPR One or wherever you get your podcasts.

[Daniel]: Six years later, Jetty was sitting at her desk feeling incredibly bored. Research jobs aren’t very common, even less so in Central America, and Jetty had had two more children. She had to help support them along with her husband. It was 1996.

[Luis Fernando]: Her boss noticed she wasn’t happy and told her about a project that was looking for a researcher at the University of Costa Rica. It was at very early stage, it didn’t even have the minimum funding and what they were studying was quite complex. The gene for schizophrenia.

At first she had her doubts…

[Jetty]: Because I had two small children and still wasn’t sure how closely I wanted to work with mental illness.

[Luis Fernando]: It was too close to her life. She would be getting involved in research into the question that frightened her the most, that was always there: Did she have the same genes as her father? Would she pass them on to her children?

But after much consideration, she accepted. The possibility, however remote, of being able to help people who suffer like her father did was exciting to her. It mattered more than her fear.

It was a small team, just three people. And well, the job entailed coming face to face with things that she previously would have rather avoided.  

[Jetty]: Because I had to go to the psychiatric hospital a lot, because we also had people at the hospital working with us. So I was terrified.

[Luis Fernando]: Having to frequently see people with mental illnesses…

[Jetty]: It brought my family’s story back to life, the suffering, the suffering that these families were feeling.

[Luis Fernando]: And when she explained what she was researching to the patient’s families…

[Jetty]: And what we noticed was that the families had a profound need for more information.

[Luis Fernando]: A need to know more about the illness. To understand it. People don’t talk about these things. Out of fear. Out of prejudice. That was something Jetty understood. She was facing the same stigma, the same silence that had marked her childhood.

So she would explain the factors that appear to contribute to the development of the illness. There are many. Some are a part of her own life story like stress and drug use and there are also others that are biological and genetic. And when she would talk to them about biological factors…

[Jetty]: We felt, on many occasions, that they felt relief from their guilt. For mothers in particular it was relieving to view mental illness as a biological illness. That her child couldn’t control it, that it wasn’t weakness of character.

[Luis Fernando]: Or that they hadn’t done something wrong while raising them. And Jetty realized that more than wanting results from the study, what the families wanted was, more than anything, to talk about the illness. And to be heard.

[Jetty]: It’s an issue that they couldn’t talk to many people about. Because when they say they have a child with mental illness, they feel like all of their neighbors become distant. A woman told me: “If I had said my daughter had cancer I would have a house full of neighbors bringing me food. My daughter has schizophrenia and…I lost friends. I lost the support of my neighbors.”

[Luis Fernando]: In this first study they collected 150 blood samples for analysis. But it wasn’t enough to get precise results. That first study was a pilot. They started another with many more samples and they were planning for it to last 5 years.   

Jetty really hoped to find something.

[Jetty]: We had just come out of the human genome project with all its promises, and we were happy, we had just found the gene for deafness. We thought we were going to finally understand biology. And what’s more, we thought that understanding biology would be really important for prevention.

[Luis Fernando]: In other words, in the future they would be able to tell people how likely they were to suffer schizophrenia and then be able to prepare them, take some precautions.

Once they found the genes for schizophrenia, they would move on to other mental illnesses: bipolar disorder, generalized anxiety, depression…  

And yes, Jetty knew it wasn’t going to be easy. But she wasn’t expecting what would come next either.

They met their first challenge before analyzing the DNA. In order to confirm that the patients could participate in the study, they needed to interview them to corroborate their diagnosis of schizophrenia. But…  

[Jetty]: When we went through the process, several interviews ended in a diagnosis of bipolar disorder.

[Luis Fernando]: The diagnosis of mental illness uses rather imprecise methods.

[Jetty]: There aren’t lab tests like…if it were for diabetes. In other words, if I’m going to study diabetes, I’m going to do a blood test to see if they have high blood sugar.

[Luis Fernando]: However, if you’re going to study schizophrenia, the diagnosis can only come from an interview between the person and a psychiatrist. And every psychiatrist is different.

But they continued their research. They contacted patients and families. They collected blood samples and analyzed the DNA. Always looking for the genes for schizophrenia.

Over the years, the team grew. And they also started studying bipolar disorder. Her dad’s illness.

But they came across another surprise. They found that several sections of DNA that had mutations associated with the risk of schizophrenia were also associated with the risk of bipolar disorder.  

[Jetty]: So, you see that there’s no…there’s no precision there either.

[Luis Fernando]: And to add to the confusion, they found families in which, for example, the father has bipolar disorder and a child develops schizophrenia.

[Jetty]: The more studies we did, the more we saw that there are no clear lines. In other words, there are people who have characteristics of schizophrenia and characteristics of bipolar disorder, or who migrate from one diagnosis to another.

[Luis Fernando]: Remember that moment when Jetty was celebrating in the lab, jumping up and down, when she found the location of the deafness gene. With these results, she started to think that it was very unlikely she would have another moment like that.

Thousands of genes, billions of possible combinations of mutations. How do you know if one has an effect? Or how much? How do you test it? The complexity of the human body was too much for them. And it’s still too much for them.     

[Jetty]: We’ve now entered a period of greater humility and conscience, realizing that…that the story of human behavior is much more complex than just adding up the genes and a few stressful life events.

[Luis Fernando]: And yes, there are hereditary illnesses and conditions that are transmitted genetically. Hemophilia, Muscular Dystrophy, Monge Deafness…

But mental illnesses, which manifest in human behavior, end up in the grey areas, full of uncertainty and constant change.

[Jetty]: Even the definition of human behavior varies from culture to culture. So it was a period of naiveté, when we also fell…into the story.

[Luis Fernando]: The story narrated by the human genome project. That our biology could be reduced to a few genes. That their weight was enormous, almost deterministic.

But no, at the moment we know of more than 100 mutations related to schizophrenia, but it’s believed that each one contributes very little.

And in reality, understanding what human beings are is a beautifully complex task.  

[Jetty]: Genetics is part of it, culture is part of it, and nutrition is part of it. If we exercise, if…any number of random events, chance, what we can’t determine, all of that it part of it. That is what we are.

[Luis Fernando]: And for Jetty, then, we are nature plus nurture.

[Jetty]: In other words, it’s not nature vs. nature. We’re both. And that is very freeing for parents. As a scientist, but also as a mother, as soon I said that I…I mean, you do the best you can.

You do the best you can and that’s it.

[Luis Fernando]:  And that’s it.

Jetty’s conclusion is complicated. At least it is for me. I was looking for certainty, definitive answers. I was looking to find something specific and justify all of the things I hate about myself.

But what I found was uncertainty. That inability to know, that idea that this is beyond what we can understand and predict.

But in the end it gives me some peace. Peace that I find in resignation. Because that means that I just have to let go. And do what I can. Survive. Adapt. And to do that is to decide that we are not our genes, that we are not completely determined by them.

And it seems a little obvious to bring it up, but there is the other inheritance. The silence.

My family inherited it. No one talks about how it feels.

My mom knows I take antidepressants, but she still won’t say the word “depression,” even though she’s seen me in a total mental fog, pacing from one spot to another, nervous and obsessive.

Honestly, I don’t even say it. It’s like a tacit agreement.

This silence, this taboo, is a story that I run into again and again. People with families coping with mental illness just like Jetty’s family did, nearly 50 years ago.

And there’s a particular look that these people share. It’s a kind of recognition. Maybe even relief. Because in that moment we can open up. And talk about how we feel. And also about how we remain silent.

I didn’t see it before, but maybe that’s where the sentence is, the determining factor.

Inside that silence…

[Daniel]: Please. If you have depression or suicidal thoughts, seek help. Speak with your friends and family, and consider seeking out professional help. And if you think a loved one is in that situation, ask them, listen to them and support them.

Luis Fernando Vargas is an editorial assistant at Radio Ambulante. He lives in San José, Costa Rica. This story was edited by Camila Segura, Silvia Viñas and me. Mixing and sound design by Andrés Azpiri. Clara Eugenia Arteaga did the factchecking.

Special thanks to Caramba Films.

The rest of the Radio Ambulante team includes Jorge Caraballo, Patrick Moseley, Laura Pérez, Ana Prieto, Barbara Sawhill, Ryan Sweikert, Luis Trelles, David Trujillo and Elsa Liliana Ulloa. Andrea Betanzos is the programming coordinator. Carolina Guerrero is our CEO

Radio Ambulante is produced and mixed on Hindenburg PRO.

Learn more about Radio Ambulante and this story on our website: radioambulante.org. Radio Ambulante tells the stories of Latin American I’m Daniel Alarcón. Thanks for listening.

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