Podcast: Large Family Beset by Schizophrenia

In today’s show, Gabe talks with Robert Kolker, author of the New York Times bestselling — and Oprah’s book club pick — book Hidden Valley Road. This non-fiction biography is the true story of a mid-century American family besieged by schizophrenia. Of their 12 children, 6 struggled with the severe mental disorder. 

Join us for the incredible story of the family who became science’s greatest hope in the quest to understand schizophrenia.

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Guest information for ‘Robert Kolker- Large Family Schizophrenia’ Podcast Episode

Robert Kolker is the author of Hidden Valley Road (2020), an instant #1 New York Times best-seller and Oprah’s Book Club selection; and Lost Girls (2013), also a New York Times best-seller and Times Notable Book, as well as one of Publisher’s Weekly’s Top Ten Books of the year and Slate’s best non-fiction books of the last 25 years. He is a National Magazine Award finalist whose journalism has appeared in New York magazine, Bloomberg Businessweek, Wired, and The New York Times Magazine.

 

 

About The Psych Central Podcast Host

Gabe Howard is an award-winning writer and speaker who lives with bipolar disorder. He is the author of the popular book, Mental Illness is an Asshole and other Observations, available from Amazon; signed copies are also available directly from the author. To learn more about Gabe, please visit his website, gabehoward.com.

Computer Generated Transcript for ‘Robert Kolker- Large Family Schizophrenia’ Episode

Editor’s Note: Please be mindful that this transcript has been computer generated and therefore may contain inaccuracies and grammar errors. Thank you.

Announcer: You’re listening to the Psych Central Podcast, where guest experts in the field of psychology and mental health share thought-provoking information using plain, everyday language. Here’s your host, Gabe Howard.

Gabe Howard: Hello, everyone, and welcome to this week’s episode of The Psych Central Podcast, I’m your host Gabe Howard, and calling into our show today, we have Robert Kolker. Robert is the author of Hidden Valley Road, which was an instant number one New York Times best seller and Oprah’s Book Club selection. He is a National Magazine Awards finalist whose journalism has appeared in Wired and The New York Times Magazine. Bob, welcome to the show.

Robert Kolker: Hi, Gabe, I’m really glad to talk to you today.

Gabe Howard: Your book is nonfiction. It’s a true story. I’m going to read from Amazon right now the description, the heart rendering story of a mid-century American family with 12 children, six of them diagnosed with schizophrenia, that became science’s greatest hope in the quest to understand the disease. Let’s talk first about how you did the research for this book. You met the Galvin family.

Robert Kolker: That’s right, my career really took shape at New York magazine, where I’ve written dozens of cover stories and feature stories about everyday people going through extraordinary situations. I really am drawn to the stories of people who manage crises and come through difficulties. I find it inspiring and I’m always looking for a deeper issue running at the bottom of it. And so when I met the Galvin family, I was amazed. This is a family that’s been through so much, so much misfortune and also so many challenges and so much scientific mystery. Medical mystery. I first met the two sisters they’re the youngest in the family. There were 12 children. They’re the only girls and they now are in their 50s. But when they were children, six of their 10 brothers had been diagnosed with schizophrenia. The family immediately became interesting to scientists and researchers who were trying to get to the genetic roots of the disease. But before that happened, there was a tremendous amount of denial, a lot of stigma that forced the family into the shadows. And so it became clear that by telling their story, maybe we could inspire the general public to sort of remove some of that stigma from mental illness, particularly acute mental illness like schizophrenia, which so many people still have difficulty talking about. 

Gabe Howard: And to anchor this in time, they were diagnosed in the 70s, this was I’m horribly bad at math, but they were diagnosed 50 years ago, so there was even more stigma, more discrimination, less understanding. It was harder to get diagnosed.

Robert Kolker: Absolutely, and also more of a reason to hide, because so many people in the establishment were blaming the families themselves for the mental illness, blaming bad parenting, in particular, blaming bad mothering. And then, of course, the medical treatments, the pharmaceutical treatments were blunter and more extreme back then. And they were just coming out of the period of lobotomies and shock therapy, the insulin coma therapies, all sorts of drastic treatments which are now so questionable. 

Gabe Howard: Now, the parents are Don and Mimi Galvin, they’re mom and dad, did mom and dad have schizophrenia or any mental illness or was it just their children?

Robert Kolker: They did not have schizophrenia and neither did anyone in their immediate families, and I think part of the mystery of this book is how does schizophrenia get inherited? Because we now are certain that there is a genetic component to schizophrenia, but we don’t know exactly how it is inherited. It’s not parent to child. It’s not recessive. It’s not like you need two people with schizophrenia to produce a child with schizophrenia. It kind of wanders and meanders through families in a very tricky way. And there was a lot of hope pinned on this family that they would help shed a little light on that mystery as well.

Gabe Howard: What were some of the most surprising things that you learned about mental illness and what really schizophrenia from your time interviewing the Galvin’s?

Robert Kolker: I was surprised by almost everything, but my biggest surprises were that my understanding of mental illness was that it was about brain chemistry and that great pharmaceutical drugs were coming online, that through trial and error and a lot of work perhaps would be able to correct your brain chemistry problem. And then whatever you had, whether it was anxiety or depression or even bipolar disorder, that it would be corrected and that you would become essentially cured, although cured is really the wrong kind of word for it.

Gabe Howard: Being in like remission or recovery.

Robert Kolker: Right, what I learned was that schizophrenia, this isn’t really true at all, that the drugs that they have, the antipsychotic drugs that are very popular, that are prescribed so much for schizophrenia, they are basically the same drugs that have been prescribed for 50 years. They may have different names, but they derive from the same classifications of typical neuroleptics or atypical neuroleptics, and that these drugs are essentially symptom suppressors. They might help a person control their hallucinations or delusions, or it might make a patient less erratic and more manageable as a patient in a health care setting. But it doesn’t turn back the clock. It doesn’t necessarily add the functionality. They really are just sort of good enough in terms of controlling the population, but not really the miracles that we look at when we talk about antidepressants, for instance. And that was a huge surprise.

Gabe Howard: It sounds like that you didn’t know a lot about schizophrenia before you started working on this book, is that true?

Robert Kolker: That’s right. I mean, I knew enough to know that it didn’t mean split personality and multiple personality, which is like the big misnomer that because of the way we use the word schizo, there’s a Latin root which refers to a split. But really, it was meant to mean a split between reality and one’s perception of reality. A person with schizophrenia tends to wall themselves off from what is commonly accepted as reality. First, a little bit and then a lot. And sometimes that means delusions. Sometimes that means hallucinations, and sometimes it means being catatonic. Sometimes it means being paranoid. And in fact, that was the other huge surprise for me for schizophrenia, which was that it isn’t really a disease at all. It is a classification. It is a syndrome. It’s a collection of symptoms that we have given a name. And I don’t mean to sound too nebulous or mystical in talking about there is such a thing as schizophrenia. It’s just that it may be several different things and that 40 years from now we might have removed the word schizophrenia from our lexicon and we might have decided that it’s really six different brain disorders with six discrete types of symptoms. And we have found ways to treat those six different conditions differently. That was another huge surprise to me.

Gabe Howard: When doing your research for the book, obviously you spoke to the family. Did you also speak with medical doctors and schizophrenia researchers and people in the medical field?

Robert Kolker: Yes, absolutely. My initial conversations were with the family themselves, who, after many years of difficulty, were ready to come forward and talk about everything that happened to their family in a very deep and profound way. But of course, in the back of my mind, I was thinking, well, how special is this family? For all I know, there might be a thousand families with lots of kids where half of them have schizophrenia. This might happen all the time. So I did an immediate round of checking, talking to major figures in scholarship of schizophrenia and the history of science, but also in the treatment of schizophrenia. And just to say, have you heard of this family? What would you say if I told you a family like this existed? How typical do you think it is? Do you know the doctors who have treated this family? Because I knew their names as well. Are those doctors on the level or are they quacks and everything really checked out that this is a family that is definitely unusual, extraordinarily so in terms of the numbers. They were an important family to study for their time, and they did help move the ball forward in a genuinely valid way and an inspiring way. So there’s a lot of hope in this story as well.

Gabe Howard: Are there many families that have that many children with half of them being diagnosed with really any severe and persistent mental illness or even just schizophrenia?

Robert Kolker: This is a big question that I pursue in the book itself, because Lynn DeLisi, one of the researchers who studied this family, was actually a collector of genetic material of what she called multiplex families, which is families with more than one, perhaps many instances of severe mental illness, not just among siblings, but maybe parents and aunts and uncles and grandparents. She made it her job in the 1980s and 90s was to collect data on as many multiplexed families as possible. So they’re out there. But even in that world, the Galvin family’s extreme. It’s hard for anyone to think of any other family with 12 children where six of them had this diagnosis. They are really, really unlikely. Then if you add on to that the complicating factor of such a family getting noticed by science and not being cast to the winds, not having people end up homeless or the family falling apart or everybody descending into addiction or suicide.

Gabe Howard: I know that you went through a lot of records and you did a lot of research and you learned a lot, you just said that you knew the doctor’s names, who diagnosed the boys. What was that like? I mean, just I don’t know what medical records looked like in the 70s, but I know that medical records in 2020 aren’t exactly what we would call. I’m going to go with legible. Was this a difficult thing to get a hold of medical records 50 years old and try to decipher them?

Robert Kolker: The ones that still survive mostly come from the state hospital in Colorado, where so many of the brothers cycled in and out, those all still existed and they are sitting there on paper in accordion folders. And those folders are all stacked up. And they were wheeled into a room where I and Lindsay Galvin Rauch, the youngest Galvin child, sat and waited. And there were two huge carts with folders spilling out. And we spent as much time as we could going through every page, scanning what we could, reading what we could. It was kind of a Raiders of the Lost Ark moment where you see at the end with all the warehouse filled with boxes, suddenly I saw there was this wealth of information. And yes, a lot of it is a little too clinical. But then there are things like the notes from the College Health Services Office where Donald Galvin was a regular back when he was in college in the mid-60s with written reports in handwriting saying that he ran into a bonfire and wasn’t sure why or got into an altercation with a cat and was bitten by a cat and wouldn’t say exactly what happened there. Lots of information that was really quite provocative and quite tantalizing and help tell a story really about a young man who was becoming a stranger to himself and not really knowing exactly what was happening to him and being afraid to talk with anyone about it.

Gabe Howard:  Hang on, we’ll be back after these messages.

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Gabe Howard: We’re back talking with the author of Hidden Valley Road, Robert Kolker.  During your research, was there anything that struck you as incredible or interesting or provocative that didn’t make it into the book? I imagine that not every story or every tangent can fit into a book. 

Robert Kolker: This is first and foremost a family story. It’s an intra generational family saga where you get to know the parents and the life they were leading and the plans they had and the type of parents they were and the reasons why they had so many children. And then you see the children start to grow up and go through changes and then the worst happens and the illness strikes that by the time you’re done with the book, you’ve traveled with this family for many, many decades, the same way you would have if you read a book like one of the great family sagas like East of Eden or something. That was what I was aspiring to the science in there. I tried to weave in in the most seamless way possible so that it didn’t feel like eating your vegetables, it didn’t feel like homework. And so while there are some really provocative and interesting scientific passages in this book, there are elements of psychiatry that are not relevant to the Galvin’s that are definitely in the cutting room floor.

Gabe Howard: Can you give us an example of that?

Robert Kolker: Yeah, there’s the whole notion of anti-psychiatry, which I maybe put in a page, but during the 60s and 70s, it was especially popular. It was this notion that the people who are who most people would call insane, maybe the only sane people in the world, and that mental illness is actually a myth. It’s a construct and that psychiatrists are the new priests and psychiatry has replaced religion. And it’s about imposing social norms on nonconformists. I guess the most mainstream manifestation of anti-psychiatry is One Flew Over the Cuckoo’s Nest, which is essentially a metaphor for a repressive society trying to pound out an iconoclast. I only was able to flick at that. But there are several amazing books written on that subject and you can certainly really get very, very arcane talking about the nature of mental illness and how much society’s definition of it has really created it in our world.

Gabe Howard: It’s fascinating because anti-psychiatry or psychiatric survivors, as they’ve sort of rebranded as, is still around today in different iterations. So it’s interesting to me that this was also a thing apparently in the 60s and 70s. It’s a variation of a theme. Right. This isn’t real, even though people are suffering from it.

Robert Kolker: Right, and in anti-psychiatry, to me, the big thing that Star is the families like the Goblin’s was concerned was that it’s one thing to write a provocative book wondering about the nature of mental illness and whether we’ve created it. And it’s quite another thing to look at six sick boys in a family of 12 who are really in need of help right now and wonder, well, what do we do to help them? Regardless, they need to be helped. The practical aspect of it really is what I was drawn to. But I just want to say very quickly, I don’t want to be dismissive of anti-psychiatry in general. And certainly, there is a hearing voices movement now that is very helpful. And there is data to suggest that that delusional mental illness may not be something that is just exclusive to people who have schizophrenia, that that a large percentage of us have perhaps had an auditory or even a visual hallucination in our lives and more than one perhaps that this sort of thing exists on a spectrum and that you shouldn’t necessarily be stigmatizing anybody who’s going through it or even trying to brand them in any way.

Gabe Howard: I’m often fascinated, especially as the host of this podcast, I get to talk to a lot of people. You know, some people believe that mental illness is absolutely 100 percent real. And everything that we understand about it is everything that there is to understand and will be. All there ever is to understand. And medical science is perfect in every way. And of course, other people go the other way and they say it’s a construct. It’s all made up. None of it’s real. It’s all in our heads. We should leave people be we’re just trying to be controlled. And what I have learned through, you know, research and talking to so many people is that the answer is really in the middle. Any medical establishment that says that they’re 100 percent perfect and we know what to do. As you’ve alluded to in the show, it’s not perfect. We don’t know what in 40 years, schizophrenia may be called. Something completely different, I believe, was your exact quote. And over on the other end, it’s absolutely real. As you said, just talking about the Galvin family, they suffered greatly, which, of course, caused their siblings to suffer and their family members to suffer. I can see why that would be an attractive thing and an attractive discussion to put in the book. I’m excited talking about it right now, but of course, it is a distraction from the Galvin family. And that sort of leads me to my next question. When I think of being distracted from the Galvin family, I am sort of rubbernecking and I’m fascinated by just the horrors that this family must have seen. But you really described the family as very hopeful. I believe your exact words are the family’s story has so many elements of hope. And I’m sitting here like I’m not seeing them. Can you explain that?

Robert Kolker: I’m laughing because in the years that I was working on this book, my friends and acquaintances would say, so what are you working on? And I’d say, I’m working on a book about a family with 12 children and six of them had schizophrenia. And then they would turn white. And I would say, but there’s a lot of hope in the book that really is you got to believe me. But I can say in a couple of ways it’s hopeful. The first is that there were two teams of researchers that studied the Galvin family back in the 80s and took genetic material. And part of this book is the story of those two different teams, led by two different researchers and their various ups and downs, trying to find more meaning in the disease, trying to find patterns of heredity until finally the Human Genome Project throws them a curve ball and, in some ways, hurts and in some ways helps the effort until finally, we have some breakthroughs in 2015 and 2016. Each of those teams moves the ball forward in our understanding of the illness and potentially significant ways. So I knew that the story was going to have that kind of hopeful ending by the end. I was excited about that. Secondly, there’s a sense of how far we’ve come. When the first of the boys was getting sick back in the 60s, the family really had a choice. They could send their son in for treatment to a place that essentially was blaming the family for mental illness, saying bad mothering caused it. They called it the schizophrenia genic mother, and that was erroneous and has been disproven, but it really dominated psychotherapy for decades. The idea of the schizophrenia genic mother causing schizophrenia.

Gabe Howard: And in fairness, it’s a myth that is still around today. It still comes up 50 years later.

Robert Kolker: Yeah, for sure, and I think it’s because we have this nature nurture conversation about acute mental illness, we wonder is all of it inherited or are you just inheriting a vulnerability that then gets triggered by the environment? So maybe, maybe your bad mother did trigger your genetic vulnerability or maybe it was marijuana or maybe it was cat litter? Yeah, there are all sorts of theories about what might be environmental triggers be. So the family had this up against them and then the other way to go would be to institutionalize them, to send the son away and perhaps doom them to a future where they are medicated into a stupor or perhaps even lobotomized or definitely given various shock therapies. So these were horrible choices. Whereas today, if a teenage boy or girl is having early signs of acute mental illness, the hopeful thing about the story is we see how much has changed that if they’re lucky enough to have half decent health care coverage, there’s early intervention, there is family support. There are things that just didn’t exist before. So that part to me is hopeful as well.

Gabe Howard: That all does sound very hopeful, and as somebody who is diagnosed with bipolar disorder, which I want to be clear, is not the same as schizophrenia, but it’s still a severe and persistent mental illness that needs understanding and research and has some commonalities. I like the idea that research has evolved so that when I needed care, it was there. Did it work? Do we understand schizophrenia better because of the Galvin family?

Robert Kolker: There is one team in Colorado led by Dr. Robert Freedman, who is still there at the University of Colorado Hospital. He became the first researcher he and his team to identify a specific gene that was a player in schizophrenia called ceRNA-7. This is back in the late 1990s before the Human Genome Project came on board. And he’s been trying to find ways to manipulate and rectify the issues regarding that part of the brain and that gene interplays. He’s been working on that for years. He’s come up with a possible way to strengthen brain health in utero with a prenatal vitamin, with a substance called choline. Choline is a natural nontoxic substance that you can get at the vitamin shop or the GNC. His theory is that expectant mothers can strengthen the brain health of their children by taking choline.  And not only that, if their child happens to have a genetic predisposition to perhaps developing schizophrenia or another acute mental illness, it’s very possible that choline will hit the brain receptor that he’s been targeting all this time and actually prevent some of those symptoms and perhaps prevent the condition entirely. Now, this is a theory and it’s being tested in a longitudinal study right now. It’s very promising. 

Robert Kolker: And it’s the Galvin family and his work with them back in the 80s that led to a long and winding road that led to this advancement. The other team is in Massachusetts, and this is a researcher named Lynn DeLisi, and she was with the National Institute of Mental Health in Washington. And now she’s in Massachusetts. And she teamed up with Amgen Pharmaceutical company to analyze the genome of the Galvin’s after years and years of doing her own work on the subject. And they identified another gene, this one called SHANK2. And they hope that by looking at what SHANK2 specifically does in the brain, that this might be a pathway that will help us understand exactly how schizophrenia takes shape in the brain.

Gabe Howard: Let’s say that the Galvin boys became symptomatic in 2020, if the same thing happened to the family today, how would their story be different? What would play out differently in 2020 versus how it played out in the 60s and 70s?

Robert Kolker: Some things would be completely opposite. Back then, they would blame the family and let’s say the 15-year-old Donald Galvin first displaying some problems, they would say, let’s separate him from the family and take him away so that we doctors can work on him. Today, the opposite would happen. They would say, how can we set up a situation where we can support the family at the same time as we’re supporting this kid and make sure that everyone is getting the help that they need? That’s one thing. The second thing is we understand now that early intervention is crucial, that with every psychotic break a person has, the harder it is for them to recover and the more likely it is they’ll have more in the future. Donald Galvin had his first signs of mental illness when he was about 15 or 16. And the psychotic break that brought him to the state hospital for the first time didn’t happen until he was twenty-five years old. So imagine nine or 10 years’ worth of psychotic episodes that could have been tempered or prevented if he had gotten early intervention. 

Gabe Howard: This entire story is incredible. How did you first become aware of this family?

Robert Kolker: The youngest Galvin family child, Lindsay, went to high school with one of my oldest and dearest friends, who also was an editor of mine at New York magazine for many years, and my friend knew about the Galvin family story just over the years when he was in high school with Lindsay. He didn’t hear about it because Lindsay wasn’t going to be talking about her family with anybody. But then as he stayed friendly with her over the years, he started to hear more and more and sort of got the gist. And then one day, Lindsay and her older sister Margaret came to him. This is in like twenty sixteen and said we’ve been trying to find a way to help the world know about our family, and we’ve been trying to think about the best way to do it for years. We thought about a memoir, but as the youngest members of our family, we don’t have an immediate understanding of what our oldest siblings went through. We haven’t been able to look at the medical records yet. Telling the story is involves the perspectives of way too many people and there’s a lot of medical information. My friend thought of me immediately because I had written about families in crisis before. My first book is called Lost Girls, and it’s about the families of five women who are all victims related in the same unsolved murder case out here in New York City, the Long Island serial killer case.

Robert Kolker: And it takes a close look at the families themselves and their difficulties. A very human story and I hope a very compassionate one. I seemed to be the right fit for this family. And that’s how I first contacted them. Now, my initial reaction was that it was going to be an impossible story to tell two parents, one of whom was deceased, 12 children, three of whom were deceased, weaving in all of their perspectives, writing about the mentally ill siblings as intimately as you possibly can so that they’re not monsters, understanding all the medical stuff that was going on, and most of all, making sure that there wasn’t going to be one family member who would stand up and say, I don’t want my medical information published in a book, which we all know there are HIPPA laws in this country where your medical privacy is yours. So I proceeded very slowly and I told the sisters that we all would know one way or another after a couple of months just how doable this would be.

Robert Kolker: And after three or so months, everybody seemed ready to do it, that it had been so many decades since the most difficult things in the family had happened that people were ready, and also that the two sisters, as the youngest ones, had really been through so much and really have been on the receiving end of so many of the traumas in the family that the older siblings all sort of deferred to them and said, well, if they want to do this, I’m not going to stop them. To me, it was an amazing opportunity and I really didn’t look back. Once everyone was ready, I really hopped aboard and worked full time on it.

Gabe Howard: Bob, without giving away the ending, where is the family now?

Robert Kolker: Most of them are still in Colorado, and to me, that’s the most amazing thing. There was sexual abuse in this family. There was clergy abuse, there was a murder suicide. My question to the two sisters and to everyone in the family is, why are you still a family? Why didn’t you the second you went to college, just sort of leave and never come back, let go change your name. But these two sisters are back in Colorado and they were involved in the care of their family. One of them is the main caretaker for the surviving mentally ill sons who are still alive. They came back to their family on their own terms. And I wanted to tell that story as well about families and how they stay together. I think a lot of us can relate to a story like that.

Gabe Howard: The name of the book is Hidden Valley Road. The author is Robert Kolker. Where can you find you and your book?

Robert Kolker: My website is Robert Kolker.com, the book is everywhere. I’m thrilled, thanks to Oprah Winfrey, that it’s gotten immense visibility and helps people understand this family better.

Gabe Howard: I highly recommend checking it out. Thank you, Bob, so much for being here.

Robert Kolker: Thank you, Gabe, it’s a real pleasure.

Gabe Howard: Thank you, everybody, for listening. My name is Gabe Howard and I am the author of Mental Illness Is an Asshole, which is available on Amazon, or you can get a signed copy, and hey, I include stickers with the podcast logo. Your laptop needs a sticker and it’s less money and I’ll even sign the book over at gabehoward.com. Remember, we have the super-secret Facebook page at PsychCentral.com/FBShow. Wherever you downloaded this podcast, please subscribe. Also, take a minute to write a review. Let people know why they should listen in. And remember, you can get one week of free, convenient, affordable, private online counseling any time anywhere, simply by visiting BetterHelp.com/PsychCentral. We will see everybody next week.

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