• Laura Owens

Robert Kolker: ...about the impact of mental illness on a family

Laura: Welcome to Nobody Told Me! I'm Laura Owens.

Jan: And I'm Jan Black.

Laura: On this episode, we're joined by journalist, Robert Kolker, author of the new book Hidden Valley Road: Inside the Mind of an American Family. Hidden Valley Road is a #1 New York Times Bestseller which tells the heartbreaking and, at times, terrifying story of the Galvin family, a family with twelve children, six of whom were diagnosed with schizophrenia.

Jan: The Galvin's were so unusual that they were studied by the National Institute of Mental Health in an effort to learn more about the genetic origins of schizophrenia. Their story is one of shame, denial, shock, trauma, and misunderstanding as it relates to mental illness. Robert, thank you so much for joining us.

Robert: Thank you, Laura and Jan. I'm really thrilled to be talking to you.

Jan: How did you first hear about the Galvin family and decide to write their story?

Robert: I had been looking for a new book to write. I'm a journalist and author. An old editor of mine, who was also a good friend of mine, put me in touch with an old high school friend of his. She happened to be the youngest member of the Galvin family. She and her sister are the only two girls in the family. They do not have schizophrenia. But they had endured some of the more trying, challenging, difficult, and even tragic aspects of life in their house over the years.

They had been talking for decades about the best way to let people know about their story. They also were convinced that the family had some scientific significance because scientists had been studying their family's genes for decades. They finally decided to ask a journalist to, not just write about their experiences, but the whole family, talk to everyone in the family. My friend thought of me because I sort of specialize, in my career, in interviewing, not newsmakers or politicians or famous people, but everyday people who go through extraordinary, dramatic challenges in their lives. I was just thrilled to be able to meet them and astounded by their story.

Laura: I was hearing that when you first had the idea for the book and thought that this family might be an interesting one for you to talk about in your next book, you were thinking it might be a difficult book to make. There weren't so many surviving members of the family, but you wanted to talk to each of them to hear their story or it wouldn't really be the story of the family if you weren't able to speak to everyone. How did that go? How did you get to know those people?

Robert: Just from a mechanical standpoint, to sit down in front of a blank page and think, "I'm going to write the story of twelve children and two parents, and even some of those children's children; get everybody represented well, make sure everything is fair and accurate, and get everybody's point of view involved, even the people who have passed away." It was really the challenge of a career.

The first thing I did, before even selling the book to a publisher, was making sure that every living Galvin family member was on board and interested in doing this. The last thing I wanted to do was to add to the family's hardship by creating a fight in the family about whether or not there should be a book at all. They got to know me as I gradually got on the phone with everyone and eventually even visited Colorado in person. I live in New York, went out and met the matriarch of the family, Mimi, who was still alive at the time, and really helped make them understand what this undertaking would mean. It means long conversations where I tried to piece together some of the events of their lives. Not everybody remembers exactly whether something happened on Thanksgiving in 1973 or 1976. There was going to be some work involved on their part. I was just thrilled and amazed that they were ready to let the world know, they were ready to work with someone like me on this.

Jan: What are the family's hopes in sharing this, their deepest, darkest secrets? I read one expert calling them 'the family with the most mental health illness in the country.'

Robert: They are convinced that one of the biggest problems the family faced as the six Galvin boys got sick was the stigma, the social stigma. This was the late 60's and early 70's when the first problems began. Half of the doctors were blaming mothers and bad mothering for schizophrenia. They actually stood up in medical schools and taught doctors-in-training that a mother could turn a child schizophrenic, which we know now is just erroneous.

The other half were really falling under the spell of psychoactive drugs like Thorazine or Clozapine, anti-psychotic drugs which did an amazing job of making patients more manageable, perhaps even calming them down, and even putting a damper on some of their delusions or hallucinations. It certainly didn't cure the disease, it just sort of helped, perhaps, empty out the mental hospitals a little bit.

Neither of those paths was a solution for this family. They really kept it secret for very long because of the social stigma. Things are only a little bit better today with regard to the stigma. They felt that their story could still be very powerful. I have to tell you, based on the mail and email that I've gotten since the book has come out from other families where schizophrenia has touched their life, it's just been amazing to hear people finding something to relate to in this book.

Laura: I think we've all heard about people who are schizophrenic, but it's one of those things that can be difficult to identify. I'm wondering how the family got to find out that their first son diagnosed, Donald, had it?

Robert: I think that, as is the case with a lot of families, they mistook it for strange teenage behavior at first. When things got really serious, when he was in his early 20's, he had already been really sick for years. They had just kind of hoped he would grow out of his weird behavior. He was sort of out of touch with other people, having trouble communicating, and didn't have close friends. Then he started to have weird impulsive behavior that even he didn't understand, like running through a bonfire at a pep rally at college or torturing a cat, weird things that were frightening him as well.

He went to see psychiatrists. That was when psychiatrists affiliated with his college thought that he might actually have mental illness. But that's when the parents really kind of clamped down and said, "No, no, no, that can't be. He's got to be able to grow out of this. This will destroy our family. It will destroy the father's job and career if it's tainted by the stigma of mental illness." That's when the secrets began. That's when they tried their best to just hope it would go away. Of course, they had no way of knowing that five other sons would also become mentally ill.

Jan: Tell us more about the symptoms, the behaviors, that those sons displayed with schizophrenia.

Robert: The other thing I wanted to do in this book is make sure that it wasn't a monster movie, that it was about six boys who become sick. They each manifest their mental illness in different ways. What they share is that thing I said a second ago, about being a stranger to their own motivations, thoughts, and feelings, doing things that they can't really explain. They all develop that differently. One became very paranoid and abusive to his wife. Another one became convinced that he was Paul McCartney. Another one started writing threatening letters to the President. They all found different ways to manifest a similar illness.

It's such a mysterious disease, schizophrenia. I don't want your listeners to think that this is a medical book, or a case study book, or a science book. There's lots of science in it, but it's meant to really be a family story. It's about what happens to a family that really considers itself to be a model family, a perfect family, but then suddenly something serious takes over their lives, something tragic happens, and they aren't sure how to deal with it. In that way, I think that even if you aren't interested in taking a college class in schizophrenia, you still might find something to relate to in this family's story.

Laura: Something that really struck me about the book was how, even though everyone in the family obviously was not affected by a diagnosis of schizophrenia, they all were affected in so many different ways. I think that really struck me. Especially with the sisters, thinking, "My God, these girls' lives were really terrorized in a lot of ways by these boys and by the stigma that they faced as young girls." Can you talk to us a little bit about that?

Robert: I'm really glad you mentioned that. My first impression, when I first heard about the family's story, was that if you weren't mentally ill and growing up in this family, you probably felt like you were being victimized all day long. You would say, "Oh my goodness, my brothers are mentally ill. What's going on? What's going to happen to me today?" I found it was way more interesting and complex than that. First of all, if you're really, really little and you grow up with strangeness in your house, that strangeness isn't strange to you, it feels normal. You grow up thinking, "That's the way it is. Donald walks around in a bedsheet and spouts out religious things all the time." It starts out with them feeling normal, only as they get older do they start to feel shame and fear.

The other thing about it is that they aren't just worried about their brothers, they're worried about themselves, they're worried that they're going to be next. They go to bed every night as kids and teenagers wondering if the next morning they'll wake up and be a stranger to themselves and be mentally ill themselves. That makes them perfectionists. That makes them want to make it clear to their parents, and to the rest of the world, that there is nothing wrong with them. They want to get straight A's, they want to be cheerful and upbeat to everyone around them outside the house. They don't want to send a single signal that they too are mentally ill because they're afraid they might become mentally ill.

Jan: From the outside, would people have suspected that there was anything wrong with the family?

Robert: In the beginning, no. In fact, they were a model family. The Galvin's were actually kind of famous in their community in Colorado Springs. Don was an instructor at the US Air Force Academy, and he flew the falcons in the Falconry program there, that meant that he was at every football game flying falcons. He was known as the Falcon Guy, even on national television when the football games were televised. He went around the country talking about falconry. Their mother was Mimi, she was in the newspaper publishing recipes that she made for her twelve children. They were sort of little celebrities.

They played the part. The kids had a dress code. At church, all the boys were altar boys. Mimi took the kids out identifying mushrooms, taught them operas and symphonies, played them for them and discussed them with them. The boys were not just star athletes, but also great musicians. Just amazing for being twelve children in one big family too. They were really, really a model family and the parents were into it. They really liked that about them. I think that made it even worse for them when things started going wrong that were so unexplainable. It was like the American Dream was shattering in front of their eyes.

Laura: What can we learn from them about how to get through the completely unexpected, and sometimes tragic, things that can happen in life? This could not have been predicted for one family.

Robert: To me, this is the great question that I asked as I was reporting on this book for four years. The title of your podcast, Nobody Told Me!, I really wanted to see what we could learn from a family like this, what they would have said to that question. To me, it's just an inspiring story. I think that all of us, at least in Western society, try to keep the bad news at bay. "How are you doing?" "Just fine, everything's great." You go through the day hoping the bad stuff doesn't happen and trying to pretend as if it'll never happen. When it does happen, we're slammed like we've hit a brick wall. Many of us catastrophize it and decide that this is the end. This is a family that didn't have that luxury, they had to keep moving even though these children were sick, and they remained a family. Another family like this might have collapsed and disintegrated and been out on the street. But they stayed together.

What I learned from them is that you can't turn inward in moments like this. You have to turn outward and help those around you, embrace the people around you, understand that they are part of your life too. The isolation that one feels when the worst happens in our lives, it's something that we thrust on ourselves because we're so ashamed when it happens. Bad things are going to happen to all of us and we all need to understand that we are together in this. As I looked at the family members, I really found that the ones who cared for one another, who turned to one another, who also cared for themselves and practiced some self-care to try and find new ways to relate to their family on better terms, these were the people who made it through intact and who made it through really functional and happy about what the future might hold.

Jan: Tell us more about that, the self-care that you're talking about that some of the other family members use to deal with this.

Robert: I wanted the book to go into this because I really do think the best non-fiction out there not only tells a great story, but also helps readers understand, "What would happen if I were in this situation?" It helps them walk in the shoes of someone who they haven't met before and who's going through something extraordinary. I wanted to make sure that I showed what many of the well-children did in their adult lives to sort of reckon with all of the tragedies of their past.

I have one sister who goes through intense therapy, for decades really, where she slowly starts to move past some of the abuse she experienced and some of the neglect she felt she experienced at the hands of her parents. In the end, she actually turns around and becomes the caregiver for her sick brothers, which to me is just astonishing. If it were me, I would imagine I would have split from the family, changed my name, and sent them a Christmas card every couple of years.

Laura: Right, right, right.

Robert: She's really in it. There's another sister who finds a way to express herself through her art in a really profound and emotional way, just to help process through her emotions. She also goes through lots of different, I guess what you call less conventional therapies. Not just talk therapy, but techniques like brainspotting and others where she really works hard to try and slay the dragons of her past. She comes out the other side quite well, as well.

There's also one brother who went to a commune in the 70's and found a new family there, not a cult, but a commune, and then came back out and is leading a happy life now and was very much involved with his family all the way through. It was inspiring to me that the family didn't disintegrate. That was the big second question of the story for me, not just how does a family have so much schizophrenia, but how does this family remain a family?

Laura: How do you think that Mimi was coping behind-the-scenes, even with things she didn't share with you? What do you think her innermost thoughts and fears were and how did she overcome those?

Robert: The thing about Mimi that I've landed on is that the thing that made her strongest was also the thing that also created difficulties for her, you can't separate one from the other, and that was her propensity for tunnel vision, her ability to have denials. In the beginning, she denied that anything was wrong, hoping that it would get better, that was bad. Once she turned a corner and the worst happened, all six boys were sick, there were terrible tragedies that the book recounts, including a murder-suicide. She stands up and she says to herself, "I'm going to become the caregiver for the boys that are left. I'm not going to turn them away." She develops a new type of tunnel vision, a new type of obstinance, where she just says, "I'm going to do this. I'm going to take care of them." That too has a downside. It means that the well-children, like the two sisters, they feel neglected by their mother. On the other hand, she is helping the sick ones. It's a paradox with her. I would say that she was able to compartmentalize, she was able to push forward, for better and for worse.

She used to have a saying where she'd say, "You can't be heartbroken every day." I just find that the most amazing thing to say from a mother who's had so much tragedy in her family. What kind of strength and what kind of determination does it take to be a person like that, who doesn't fall apart? Who wakes up the next morning and says, "Today's a new day. I'm going to see where it takes me." To me, that part of her, that aspect of her, is just inspiring.

Jan: As a mother, what did she say to you about telling her family's story?

Robert: She was very excited to talk to me because, not that I want to give away anything in the book, but the family had learned some scientific information about their genetics from the researchers who had known them for decades. They had just learned it as I was coming on the scene. She was excited by that because it was further proof that it wasn't anything that happened in the environment that caused the family to be this way. She didn't drive her boys crazy. It was genetics that played a major role in what happened. She was ready to talk to me. What I learned later is that she wasn't always that way, that she really wasn't interested in talking about the family's dirty laundry for a very long time.

By the time I talked to her, she was able to talk, at least a little bit, about the shame she felt for so many years, about how afraid she was to talk about what was happening in the house with other people, about the times when sometimes some of her sons actually made her feel unsafe in the house. The many times she had to call the police because the boys were fighting and she couldn't control them. These were things she was able to open up about by the end. Of course, it wasn't easy for her to open up even then. She was still, even at age 90 or 91, very easy at deflecting uncomfortable questions and very proficient at changing the subject and talking about something more pleasant. I had real allies with the Galvin sisters. They sat there with me, between the three of us, we were able to steer her back and make sure that she talked a little bit about some of the difficult times.

Laura: This family has had such an impact on the world of science, obviously. But at the same time, it seems to me like Mimi would rather the family have a different legacy. I feel like she would want them to be known as looking better on the surface, maybe than they were behind-the-scenes. What do you think their legacy is versus what they want it to be?

Robert: It's true. One of Mimi's things was how things looked. Even toward the end, Peter would be by the house, he would come by for a visit and he wouldn't be wearing fresh clothing or wouldn't have showered that day. She would have scolded him for that. Others in the house would have said, "Really Mimi? This is what you're worried about? He's had an acute mental illness for 50 years, this is not necessarily the issue."

I think their significance is twofold. There is a scientific legacy that they leave behind. They do help point the way toward how we might better understand this disease. There's more than one way to try to look for the genetic code to schizophrenia. There's a sense, that I came up with in reporting this book, that a lot of people have been doing it the wrong way. They've been relying on sequencing the human genome and looking at the general population to try to isolate factors with schizophrenia. The problem with this is that there are just too many factors, it doesn't really give you anything. This book makes the case that families like the Galvin's, really show how the disease takes shape in the brain, and that they should be objects for further study. It's amazing to me that they hadn't been studied more than they had.

More than that, they also show how not everybody got it, that some had more resilience physically to developing the illness, even if they carried the same genetic mutation. That suggests that perhaps there's a way to fortify the brain or strengthen the brain during its developmental phase. That means that, even in utero, perhaps expectant mothers who have babies growing inside them could take nutritional supplements, like Choline for instance, that might actually fortify them against developing acute mental illness. That's something that has not been proven, but that is being tested right now in a long-term study. If something comes of that, then the Gavin's legacy will be really, really huge.

There's an emotional legacy they have too. This is a family that had the worst possible things happen to them and were willing to talk about it in very intimate ways. This story, I wanted to make sure, was a very intimate story and not just a case study. That legacy, I hope, is powerful too.

Jan: Your book is an official Oprah's Book Club selection, it's a #1 New York Times Bestseller. Why do you think it's touched such a nerve with people?

Robert: First of all, I'm amazed and grateful that Oprah's Book Club selected it, it certainly wasn't on my radar. Most of the books that are selected are fiction. It's not even like I went to bed at night as I was reporting the book thinking, "Maybe it'll get on Oprah's Book Club." I'm just thrilled and amazed. What I learned from watching readers react to the book week after week in the comments section of Instagram, which is where Oprah's Book Club operates, is that people were really connecting with the book in an emotional way. Not just people who had mental illness in their life, but people who wanted to see how a family survived something like this, and what kind of parents manage in a crisis like this. Everyone has tragedy in their families, everyone has challenges to face. I think that's how people are connecting with it. I'd like to think that that's why, perhaps, it's connecting with readers in such a powerful way.

Laura: As you know, our show is called Nobody Told Me! You touched on this before, but what is your nobody told me lesson? What is it that nobody told you about schizophrenia, or you could take it to coping with mental illness as an individual, or as a family that no one could have told you before you started researching this Galvin family? I also find it interesting that Rolling Stone magazine said that you possess multiples of the empathy gene. It's going to be interesting to see how you answer this since it seems like you were very wise before you started it.

Robert: That's very flattering. Certainly, nobody told me that schizophrenia wasn't really an illness, that it's a syndrome, that it's the collection of symptoms that we've given a name. We know what COVID-19 is, for example. We know molecularly what it is, it's a virus, that's why we're working on a vaccine right now. But schizophrenia is just a classification. It's something that a lot of different theoreticians have come up with different symptoms and grouped them together and said, "We're going to call this schizophrenia." To me, that just makes it really elusive and mysterious.

Nobody told me that the drugs that they have to treat schizophrenia really are not like the drugs for anxiety, or depression, or bipolar disorder, they aren't as effective. I thought that it was just a matter of getting the right meds in line and you'd be much better, but it really isn't like that. Nobody told me how far behind we are in really mastering this condition and really understanding it better. That's one.

In my life, I think nobody had told me early on just how collaborative a writer's life is. I think in our fantasy world, in our society, a writer goes off into a hut, produces a masterpiece, hands it to their editor, their editor changes a line or two, and then suddenly everyone celebrates what a genius the writer is. But that, in my 25 years, has never been close to my experience. You accomplish more when you turn outward, when you share what you're working on with your friends, with your loved ones, and with your editors. You listen to them, you focus group, and you test market to see what's working and what isn't. You talk out problems with other people. It's really the opposite of that great solitary artist theory that people have about writing. I would just put that out there as well.

Jan: One question that comes to my mind, having done all of this research on schizophrenia and talking to this family, are you optimistic that we are in a better place right now, in terms of dealing with schizophrenia, than we were when they first started to discover the impact it was having on their family? You seem, to me, somewhat pessimistic.

Robert: I certainly am saddened to hear that we haven't really come up with better drugs than what they had 30 or 40 years ago. All the drugs they have for it now are basically the same. They have different names, and they're sort of the descendants of those original drugs. There's been no game-changing drug.

However, because the stigma is reducing, not just for schizophrenia, but for other mental illnesses, like bipolar disorder, or brain disorders like autism, that means that families are getting help earlier, families are getting support earlier. That means that families stay intact and are in a better position to support the sick child. It also means that the sick child might not get that sick.

If you can find the way through a problem when they're 15 years old, that's much better than when they're 25 years old. They'll have fewer psychotic breaks, they'll lose less gray matter, they'll be more functional, they'll have a better shot at a well-rounded life. The early intervention really is something that's crucial with this illness. I'm very optimistic now that more families are getting that than they did during the Galvin's time.

Laura: It's great that you're really putting this on the map and that all of this attention you're getting with Oprah and the New York Times and everything, hopefully a lot of people will read this and put some more attention, and maybe some money into trying to find better treatment and maybe eventually a cure. We really thank you for that and want to know how people can learn more about the book and connect with you on social media.

Robert: Anyone can email me anytime. My website is robertkolker.com. My email is bob@robertkolker.com. I'd be delighted to talk to anyone about this illness and this family.

Jan: It has been a delight to talk with you. How insightful, informative and just, again, empathetic you are. This has really been an eye-opener for us, we thank you so much.

Robert: Jan, Laura, thank you so much. This has just been great.

Jan: Again, our thanks to Robert Kolker. His book is called Hidden Valley Road: Inside the Mind of an American Family. Again, his website is robertkolker.com. I'm Jan Black.

Laura: And I'm Laura Owens.

Jan: You're listening to Nobody Told Me! Thank you so much for joining us.

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