Massive Household Beset by Schizophrenia

Join us for the incredible story of the family that became science's greatest hope in understanding schizophrenia.

Guest information for the podcast episode "Robert Kolker – Great Family Schizophrenia"

Robert Kolker is the author of Hidden valley road (2020), an instant New York Times bestseller and Oprah's Book Club pick; and Lost girls (2013), also a New York Times bestseller and a notable Times book, as well as one of Publisher & # 39; s Weekly's ten best books of the year and one of Slate's best nonfiction books in the past 25 years. He is a finalist for the National Magazine Award, whose journalism has appeared in New York's Bloomberg Businessweek, Wired, and the New York Times Magazine.

Via the Psych Central Podcast Host

Gabe Howard is an award-winning writer and public speaker living with bipolar disorder. He is the author of the popular book, Insanity 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 – Great Family Schizophrenia" episode

Editor's note: Please note that this transcript was computer generated and therefore may contain inaccuracies and grammatical errors. Thank you very much.

Announcer: they listen The Psych Central Podcast, where visiting experts in the fields of psychology and mental health share thought-provoking information in simple everyday language. Here is 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 we're calling our show today, we have Robert Kolker. Robert is the author of Hidden valley roadThis was instantly the New York Times bestseller and Oprah's Book Club pick. He is a finalist in the National Magazine Awards, whose journalism has appeared in Wired and the New York Times Magazine. Bob, welcome to the show.

Robert Kolker: Hello Gabe, I am very happy to speak to you today.

Gabe Howard: Your book is non-fiction. It's a true story. I'm about to read the description from Amazon now, the heartbreaking story of a mid-century American family of 12 children, six of whom were diagnosed with schizophrenia, and which became science's greatest hope in understanding the disease. First, let's talk about how you did the research for this book. You met the Galvin family.

Robert Kolker: Right, my career took shape at New York Magazine, where I wrote dozens of cover stories and features about everyday people going through extraordinary situations. I'm really drawn to the stories of people dealing with crises and getting into trouble. I find it inspiring and am always looking for a deeper topic that comes at the end. When I met the Galvin family, I was amazed. This is a family that has gone through so much, so much misfortune and also so many challenges and so much scientific mystery. Medical riddle. I met the two sisters who are the youngest in the family. There were 12 children. You're the only girls and now in your 50s. But when they were children, six of their ten brothers were diagnosed with schizophrenia. The family immediately became of interest to scientists and researchers 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 pushed the family into the shadows. And so it became clear that by telling her story we might perhaps inspire the general public to remove some of that stigma from mental illness, especially acute mental illness like schizophrenia, that so many people still have difficulty talking about .

Gabe Howard: And in order to anchor this in time, they were diagnosed in the 70s. I was terribly 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 more of a reason to hide, because so many people in the facility blamed the families themselves for the insanity and blamed bad parents, especially bad mothers. And then of course the medical treatments, the pharmaceutical treatments, were duller and more extreme back then. And they just came from the time of lobotomies and shock therapy, insulin coma therapy, all sorts of drastic treatments that are now so questionable.

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

Robert Kolker: They did not have schizophrenia, nor did anyone in their immediate family, and I think part of the mystery of this book is how schizophrenia is inherited. Because we're now sure that schizophrenia has a genetic component, but we don't exactly know how it's inherited. It's not parent to child. It's not recessive. It's not that you need two people with schizophrenia to father a child with schizophrenia. It wanders and meanders through families in very tricky ways. And this family had great hopes that they would also help shed some light on this mystery.

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

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 medicines went online that through trial and error and a lot of work, maybe could 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 essentially be cured, although cured is really the wrong word for it.

Gabe Howard: To be in some sort of remission or recovery.

Robert Kolker: Right, what I learned was that schizophrenia, that's not really true at all, that the drugs they have, the antipsychotics that are very popular, that are so often prescribed for schizophrenia, are basically the same drugs that they are it had been prescribed for 50 years. They may have different names, but they are derived from the same classifications of typical neuroleptics or atypical neuroleptics and that these drugs are essentially symptom suppressors. They can help a person control their hallucinations or delusions, or they can make a patient less unpredictable and more manageable than a healthcare patient. But it doesn't turn back the clock. The functionality is not necessarily added. They're really good enough for population control, but not really the miracles we look at when we talk about antidepressants, for example. And that was a big surprise.

Gabe Howard: It sounds like you didn't know much about schizophrenia before you started working on this book. Is that correct?

Robert Kolker: That's right. I mean, I knew enough to know that it doesn't mean split personality and multiple personality, which is like the big misnomer that because of the way we use the word schizo, there is a Latin root that is refers to a split. But actually it should mean a split between reality and the perception of reality. A person with schizophrenia tends to shield himself from what is generally accepted as reality. First a little and then a lot. And sometimes that means delusions. Sometimes that means hallucinations and sometimes it means being catatonic. Sometimes it means being paranoid. In fact, that was the other big surprise to me about schizophrenia, which is that it is not a disease at all. It's a classification. It's a syndrome. It is a collection of symptoms that we have named. And I don't want to sound too nebulous or mystical when I talk about the existence of such a thing as schizophrenia. It's just that it can be different things and that in 40 years we have removed the word schizophrenia from our dictionary and we have decided that it is actually six different brain disorders with six different types of symptoms. And we've found ways to treat these six different conditions differently. That was another big surprise for me.

Gabe Howard: When you researched the book, you obviously spoke to the family. Have you also spoken to doctors, schizophrenia researchers and medical professionals?

Robert Kolker: Yes absolutely. My first conversations were with the family themselves who, after many years of difficulty, were willing to come forward and speak in very deep and profound ways about everything that was happening to their family. But of course I thought in the back of my mind, how special is this family? As far as I know, there are maybe a thousand families with many children, half of whom have schizophrenia. This can happen all the time. So I did an immediate round of screening and spoke to prominent figures in schizophrenia and the history of science, but also the treatment of schizophrenia. And just to say, have you heard of this family? What would you say if I told you there was such a family? How typical do you think that is? Do you know the doctors who treated this family? Because I knew their names too. Are these doctors up to par or are they quacks and everything has really verified that this is a family that is definitely unusual, extraordinary in number. They were an important family to study for their time, and they helped move the ball forward in a really valid and inspiring way. So there is a lot of hope in this story too.

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

Robert Kolker: This is a big question that I follow in the book myself, as Lynn DeLisi, one of the researchers who studied this family, was actually collecting genetic material from so-called multiplex families, which are families of more than one, maybe many Cases of severe mental illness, not only among siblings, but possibly also among parents, aunts, uncles and grandparents. In the 1980s and 90s, she made it her business to collect data on as many multiplex families as possible. So you are out there. But even in this world, the extreme is the Galvin family. It is not difficult for anyone to think of another family of 12 children with six of them having this diagnosis. They are really, really unlikely. If you then add that the complicating factor in such a family is science perceived and not disregarded, that people don't become homeless, or families fall apart, or everyone becomes addicted or suicidal.

Gabe Howard: I know that you have looked through a lot of records and done a lot of research and learned a lot. They just said you knew the names of the doctor who diagnosed the boys. How was it? I mean, I just don't know what medical records looked like in the 70s, but I do know medical records in 2020 are not exactly what we would call them. I will go with legible. Was it difficult to obtain and decipher 50-year-old medical records?

Robert Kolker: Most of those who survive are from the Colorado State Hospital, where so many of the brothers were moving in and out that all of them still existed and they are sitting there on paper in accordion binders. And those folders are all stacked. And they were rolled into a room where me and Lindsay Galvin Rauch, the youngest Galvin child, sat and waited. And there were two huge carts with folders pouring out of them. And we spent as much time as possible going through each page, scanning what we could, reading what we could. It was sort of a Raiders of the Lost Ark moment where you end up seeing the whole warehouse filled with boxes. Suddenly I saw that there was such a wealth of information. And yes, a lot is a little too clinical. But then there are things like the College Health Services Office Notes, which Donald Galvin was a regular in college on in the mid-1960s. Handwritten written reports state he got caught in a campfire and not sure why, or got into an argument with a cat and was bitten by a cat and did not want to say exactly what happened there. Lots of information that was really very provocative and tempting and helped to tell a story about a young man who became a stranger to himself and did not know exactly what was happening to him and was afraid to talk to someone about it.

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Gabe Howard: We're talking to the author of again Hidden valley roadRobert Kolker. Was there anything during your research that you found incredible or interesting or provocative that didn't make it into the book? I imagine that not every story or every tangent can fit in a book.

Robert Kolker: This is primarily a family story. It is an intra-family family saga where you learn about the parents and the life they led, the plans, the nature of the parents, and the reasons they had so many children. And then you see the kids grow up and go through changes and then the worst happens and the disease suggests that by the time you finish the book you have traveled with this family for many, many decades so you had it, if you'd read a book like some of the great family sagas like East of Eden or something. That was what I was striving for in science there. I tried to blend in as seamlessly as possible so it didn't feel like veggies but like homework. While there are some really provocative and interesting scientific passages in this book, there are elements of psychiatry that are not relevant to the Galvins and are definitely in the cutting room.

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

Robert Kolker: Yes, there is the whole term anti-psychiatry that I may have put to one side, but it was especially popular in the 60s and 70s. It was this notion that the people that most people would call crazy were perhaps 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 think the most common manifestation of anti-psychiatry is One Flew Over the Cuckoo’s Nest, a metaphor for a repressive society trying to take out an iconoclast. I could only look at that. But there are some amazing books that have been written on the subject and you can certainly get very, very mysterious talking about the nature of mental illness and how much society's definition really created it in our world.

Gabe Howard: It's fascinating because anti-psychiatry, or psychiatric survivors as they were renamed, still exist in different iterations today. So it's interesting to me that this apparently also happened in the 60s and 70s. It's a variation on a theme. Law. This is not real, although people are suffering from it.

Robert Kolker: Right, and in antipsychiatry the big thing for me was that families are star like the goblins, that one thing is to write a provocative book that wonders about the nature of mental illness and whether we created them . And looking at six sick boys in a family of twelve who really need help right now and wondering what we are doing to help them is a very different matter altogether. Regardless, they must be helped. The practical aspect is really what attracted me. But I just want to say very quickly that I don't want to oppose antipsychiatry in general. And of course there is now a hearing voices movement that is very helpful. And there is data to suggest that this delusional mental illness may not just be reserved for people with schizophrenia, that a large percentage of us may have had an auditory or even visual hallucination in our lives, and more than one that it exists on a spectrum and that one shouldn't necessarily stigmatize someone who goes through it or even tries to brand them in any way.

Gabe Howard: I am often fascinated, especially as the presenter of this podcast, I can speak to a lot of people. You know, some people believe that mental illness is absolutely 100 percent real. And all we understand about it is all there is and will be to understand. Everything there is ever to understand. And medicine is perfect in every way. And of course other people go the other way and say it's a construct. It's all made up. None of this is real. It's all in our heads. We should leave the people, we're just trying to be controlled. And what I've learned from researching and talking to so many people is that the answer really lies in the middle. Any medical facility that says it is 100 percent perfect and we know what to do. As you suggested on the show, it's not perfect. We don't know what schizophrenia might be called 40 years from now. I think something completely different was your exact quotation. And on the other end, it's absolutely real. As you said, just talking about the Galvin family, they suffered a lot, which, of course, resulted in their siblings and family members suffering. I can see why that would be an attractive thing and discussion to include in the book. I look forward to talking about it now, but of course it's a distraction from the Galvin family. And that leads me to my next question. When I think of being distracted by the Galvin family, I'm kind of rubbernecking and I'm fascinated by the horrors that must have seen this family. But you really described the family as very hopeful. I believe your exact words are that there are so many elements of hope in family history. And I'm sitting here like I don't see her Can you explain that?

Robert Kolker: I laugh because over the years I've worked on this book my friends and acquaintances have said, what are you working on? And I would say I'm working on a book about a family with 12 children, six of whom had schizophrenia. And then they would turn white. And I would say but there is a lot of hope in the book that you really have to believe me. But I can say in many ways that it is hopeful. The first is that there were two teams of researchers who were studying the Galvin family in the 1980s and taking genetic material. And part of this book is the story of these 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 inheritance patterns until the human genome project finally turns them into a curve ball and in some ways it hurts and in some ways the effort helps until we finally have some breakthroughs in 2015 and 2016. Each of these teams moves the ball forward in our understanding of the disease and potentially meaningful pathways. So I knew the story would have such a hopeful ending in the end. I was excited about it. Second, there's a sense of how far we've come. When the first of the boys got sick in the 1960s, the family really had a choice. They were able to send their son to a place where the family was largely blamed for mental illness for treatment and said bad motherhood caused it. They called it the schizophrenic mother and that was wrong and has been refuted, but it really dominated psychotherapy for decades. The idea of ​​the schizophrenic mother causing schizophrenia.

Gabe Howard: And in fairness, it's a myth that continues to this day. It comes 50 years later.

Robert Kolker: Yeah, sure, and I think because we're having this conversation about acute mental illness, we're wondering if it's all inherited, or if you're just inheriting a vulnerability that is then triggered by the environment. Maybe your bad mom triggered your genetic vulnerability, or maybe it was marijuana, or maybe it was cat litter? Yes, there are all sorts of theories about what environmental triggers could be. So the family had to deal with them, and then the other way to institutionalize them would be to send the son away and maybe judge them into a future where they would be stupored, or maybe even lobotomized, or definitely receive various shock therapies . So those were terrible decisions. While today, when a teenage boy or girl has early signs of acute mental illness, the hope in history of how much has changed is that if they are lucky enough to have reasonably adequate health insurance, early on is intervened. There is family support. There are things that just didn't exist before. So this part is also hopeful for me.

Gabe Howard: This all sounds very hopeful and as someone diagnosed with bipolar disorder, which I want to make clear, this is not the same as schizophrenia, but it is still a serious and persistent mental illness that requires understanding and research, and has some similarities . I like the idea that research evolved to be there when I needed care. Did it work? Do we understand schizophrenia better because of the Galvin family?

Robert Kolker: In Colorado there is a team led by Dr. Robert Freedman, who still works at the University of Colorado Hospital. He was the first researcher he and his team identified who identified a specific gene that played a role in schizophrenia called ceRNA-7. This was in the late 1990s, before the Human Genome Project came on board. And he's been trying to find ways to manipulate and fix the problems related to that part of the brain and how genes interact. He's been working on it for years. He found a possible way to boost brain health in the uterus with a prenatal vitamin containing a substance called choline. Choline is a natural non-toxic substance that you can get in the vitamin shop or in the GNC. His theory is that expectant mothers can boost their children's brain health by taking choline. Not only that, if your child has a genetic predisposition to potentially developing schizophrenia or other acute mental illness, choline is very likely to hit the brain receptor it is targeting all the time and actually prevent some of these symptoms and maybe prevent the condition completely. This is a theory that is currently being tested in a longitudinal study. It is very promising.

Robert Kolker: And it is the Galvin family and his work with them 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 who worked at the National Institute of Mental Health in Washington. And now she's in Massachusetts. And she teamed up with Amgen Pharmaceutical to analyze the genome of the Galvins after years of doing her own work on the subject. And they identified another gene, this one called SHANK2. And they hope this is a way of helping us understand exactly how schizophrenia takes shape in the brain when we look at what SHANK2 does in the brain specifically.

Gabe Howard: Let's say the Galvin boys became symptomatic in 2020. If the same thing happened to the family today, how would their story be any different? What would develop differently in 2020 than in the 60s and 70s?

Robert Kolker: Some things would be completely opposite. Back then, they blamed the family and let's say 15 year old Donald Galvin showed some problems first. They said we would separate him from the family and take him away so that we doctors could work on him. Today the opposite would happen. You would say how can we create a situation where we can simultaneously support the family with the support of this child and make sure everyone gets the help they need? That's one thing. The second is that we now understand that early intervention is critical. With every psychotic break a person has, the harder it is for them to recover and the more likely they are to have more in the future. Donald Galvin had his first signs of mental illness when he was around 15 or 16 years old. And the psychotic break that first took him to the state hospital did not occur until he was 25. So imagine psychotic episodes worth nine or ten years that could have been mitigated or prevented if he had intervened early.

Gabe Howard: This whole story is amazing. How did you find out about this family?

Robert Kolker: The youngest child in the Galvin family, Lindsay, attended high school with one of my oldest and dearest friends, who was an editor for New York Magazine for many years, and my friend knew about the history of the Galvin family over the years was in high school with Lindsay. He didn't hear about it because Lindsay wouldn't talk to anyone about her family. But as he became friends with her over the years, he heard more and more and somehow understood the essentials. And then one day Lindsay and her older sister Margaret came to him. This is around 4pm and we have been trying to find a way to help the world learn about our family and we have tried for years to think about the best way to do it. We pondered a memory, but as the youngest members of our family, we have no immediate understanding of what our oldest siblings went through. We haven't been able to see the medical records yet. Storytelling involves the perspectives of far too many people and there is a lot of medical information. My friend immediately thought of me because I had previously written about families in crisis. My first book is called Lost Girls and is about the families of five women who are all victims of the same unsolved murder 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 troubles. A very human story and I hope a very compassionate one. I seemed to fit in with this family. And that's how I contacted her for the first time. My first reaction was that it would be an impossible story to interweave two parents, one of whom had died, 12 children, three of whom had died, in all their perspectives and to write about their mentally ill siblings as intimately as you did just so they aren't monsters, understand all the medical things that are going on, and most importantly, make sure that there isn't a single family member who gets up and says, not me. I don't want my medical information published in a book that we all know has HIPPA laws in this country where your medical privacy is yours. So I went very slowly and told the sisters that after a few months we would all know in one way or another how feasible this would be.

Robert Kolker: And after about three months everyone seemed ready, that it was so many decades ago that the most difficult things in the family had happened, that people were ready, and that the two sisters, being the youngest, were really ready to have so much went through and really was on the receiving end of so much trauma in the family that the older siblings put them all off and said, well, if that's what they're going to do, I'm not going to stop you. It was a great opportunity for me and I really haven't looked back. Once everyone was done I really jumped on board and worked on it full time.

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

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

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. Thanks to Oprah Winfrey, I am thrilled that it has gained immense visibility and helps people understand this family better.

Gabe Howard: I highly recommend it. Thank you Bob for being here.

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

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