;

(6-1-20) My son, Kevin, is a certified peer specialist – a person with a serious mental illness in recovery who helps others with their mental illnesses. I’m proud of him and his work.

Unfortunately and unnecessarily, peers are sometimes viewed as being adversaries to parents and families. This is counter productive. The same thinking that applies to peers can be said about parents and families. Only a parent or family member can fully understand what that experience involves. Parents handle issues differently. Some better than others. But teamwork is more productive than head butting, especially when each side should have the same goal, which should be helping an individual prosper.

The voices of family members are important. I remember vividly what a brother told me about his sister when I interviewed him in Miami for my book. He told me that his sister had schizophrenia and during the past 30 years she had been seen by two dozen psychiatrists, assigned three times that number of social workers, and had been arrested, and appeared before judges. When all of those doctors, social workers and judges were gone, he was still with her picking up the pieces.

It is important for parents to talk about their experiences. I am delighted that Randye Kaye, an author, public speaker, and mental health activist, invited two other mothers of adult children with serious mental illnesses to participate in a video discussion. Baltimore advocate Laura Pogliano and Miriam Feldman, both have written for this blog.

In addition, Kaye invited Robert Kolker, the New York Times bestselling author of Hidden Valley Road: Inside the Mind of an American Family to join their discussion. Kolker’s book chronicles the experiences of the Galvin family, a midcentury American family in Colorado Springs with twelve children, six of whom have been diagnosed with schizophrenia. Kolker’s book is a selection of the revived Oprah’s Book Club.

Thank you Randye Kaye, Laura Pogliano with SARDAA, and Miriam Feldman for sharing your experiences. Kaye is the author of  Ben Behind His Voices.  Feldman’s book, He Came In With It: A Portrait of Motherhood and Madness, will be available July 21st. Here is an NPR interview with Kolker about Hidden Valley Road.

There are still many questions about schizophrenia — what it is, what causes it, and how to treat it.

One family has helped researchers take steps forward in attempts to find answers to these questions.

The Galvins seemed like a model for baby-boomer America, 12 children with a military dad and a strict but religious mother growing up in Colorado in the 1960s. But over the years, six of the boys in the family were diagnosed with schizophrenia.

Writer Robert Kolker, the bestselling author of Lost Girls, tells the story of the Galvin family — and how their journey is transforming the science around the mental illness — in a new book, Hidden Valley Road: Inside the Mind of an American Family.

Interview Highlights

On seeming like the perfect family

Well, outwardly, Donald [the oldest son born in 1945] was perfect. He was the perfect son in his parents eyes. He could do no wrong. He was a football star in high school and a wrestling star. He dated the general’s daughter at the Air Force Academy. He really seemed to have it all together. But he had known even in his teen years that something was off. He had a barrier between himself and other people. And then it even got worse once he went off to college. And as we know now, schizophrenia often manifests in late adolescence. And by the time he was 20, he was doing impulsive things at school, like running into a bonfire. But then came the incidences with the cat. He went to college health services one time with a cat bite on his hand, and he didn’t explain how he got it. A year later, he came back and this time he said he killed a cat slowly and painfully. But as he was saying it, he seemed emotionally troubled, according to the hospital notes. He seemed upset, as if he didn’t even know why he did it. And this was the real pretext for sending him into the mental health system for the first time. But not the last.

On how the six brothers presented differently with schizophrenia

Well, one of the challenges as a reporter was to not make mental illness out to be something that was uniform … The fact is, these brothers were all different and manifested their illnesses differently. Donald, while he was really erratic and very off putting at a younger age is now very sweet and kind in his 70s, but still quite delusional. He believes he’s the offspring of an octopus. Matthew is grouchier. But with medication, he’s actually far more functional than his other brothers. Peter is a talented musician and extremely loving toward the rest of his family. And then the other three mentally ill brothers who are deceased were all different too — Joseph, saw visions in the sky like a Chinese emperor talking to him; Jim self-harmed a lot because he was so paranoid and upset, and he also was abusive, terribly abusive toward his younger siblings, particularly the girls. … The most harrowing story of all is Brian, who in 1973, seemingly out of nowhere, murdered his girlfriend and then killed himself in a murder-suicide that the family tried to write off as an accident. But in reality, he had been prescribed an antipsychotic drug not long before that. So he, too, had schizophrenia as well.

On the nature vs. nurture debate

Well, at the very beginning of psychiatry, most people who were giving schizophrenia name — whether it was dementia praecox or schizophrenia — believed that it had some sort of physical quality to it and that it might be hereditary. But Sigmund Freud disagreed. He really believed that that, mainly, it was something that was inherited — not inherited in a genetic sense, but inherited in terms of childhood trauma, in terms of the way that one’s childhood experiences impacted the unconscious mind. And this nature and nurture debate continued for some time.

And in fact, the nurture people, the psychoanalysts really held sway throughout the 20th century, at least in America with books like I Never Promised You A Rose Garden — all suggesting that people who had schizophrenia lived in a world that the therapist had to penetrate, had to break through the barrier and pull them back into our world. And that with the right kind of therapy, the problem might be solved and the person might enter reality again. And this completely ignored the genetic aspect of it.

Now we’re living in a world where everything is seemingly about genetics, but we’re back to a nature-nurture argument because we believe that schizophrenia and other complex diseases aren’t just about genetics, but about genes that are impacted or affected by the environment. So perhaps one has a vulnerability or a susceptibility to developing schizophrenia that is activated by something in the environment, whether it’s hallucinogenic drugs or bacteria. Everyone has a theory, but that’s the nature-nurture debate that never really left us.

On the changing definition of schizophrenia

And the definition of schizophrenia changes too, with each generation. With each edition of the DSM [Diagnostic and Statistical Manual of Mental Disorders]. Well, it’s always been known to be a syndrome as opposed to a disease. It’s not like influenza where you can identify what it is in terms of its chemistry. Schizophrenia is really a collection of symptoms that are defined and then treated based on those symptoms. And so with each edition of the DSM, the Bible for psychiatrists, the definition of schizophrenia has changed so that it’s often tailored toward the style of treatment at the time.

And so people were blaming the mothers and fathers for schizophrenia in the 50s. And so the collection of symptoms were all arranged around that idea. Then by the 80s, the definition of schizophrenia had been officially changed, almost to be tailored toward the new style of treatment, which was with psychotropic drugs like thorazine and clozapine. These drugs at the time are almost assumed to be cures. But, of course, we know now that while they can be helpful in many instances, they really are treating symptoms and not actually resolving the condition.

On one doctor’s important work in the 1980s

Dr. [Lynn] DeLisi was a pioneer at the time, she was one of the top researchers at the National Institute of Mental Health, and she became fascinated by the idea that if you studied a family with a large incidence of schizophrenia in it, you might be able to find some sort of genetic silver bullet inside it that could help us understand how the condition takes shape in the general population. At the time, she was sort of not taken seriously because everyone at the time, in the 80s, before they sequenced the human genome, thought that schizophrenia was far too complex a genetic disease to even bother doing such a thing. They thought it was something like Alzheimer’s or like cancer, just too many genes at play. How could one family have the key?

But she went on to assemble the most numerous collection of what she called multiplex families. And the Galvins were one of those first families — and they were the largest family. And it was through the study of those families that, with a lot of twists and turns, she ended up — once the human genome with sequenced — to actively demonstrate how families like the Galvins can help us understand the condition and how it takes shape….

[DeLisi’s] belief was that this definitely was inherited, that environment had nothing to do with it, and her belief came as a great relief to Mimi Galvin, the mother, the matriarch of the family, who really had been blamed by a lot of psychiatrists over the years for the condition. And so she pinned all of our hopes on Dr. DeLisi and other researchers to really prove that this was genetic. What they found was, in fact, the genetic mutation that might be unique to this family, but is so vital to brain function that it might help us understand how schizophrenia works. And that’s really how families like the Galvin’s can help us going forward. We can look at them and their particular genetic mutation that might be at fault. And while that mutation may not exist elsewhere, it can help us understand the disease and how it affects others. And there are models for this with other diseases. And who knows, if we find the right mutation and are able to treat it with a drug, that drug might be helpful to others.

On schizophrenia showing in young adulthood

In the 80s, the new wisdom about schizophrenia was that it was a developmental disorder, which is to say that even though people came down with it at the age of 20 or 21, that didn’t mean that they suddenly got bitten by an insect and had schizophrenia. It meant that there was something within their genetic makeup that they had from before they were even born that gave them a vulnerability, a special sensitivity — whether it was the inability to filter out certain stimuli or difficulty in brain development — that only manifested itself in the final stages of brain development, which as we know now, is adolescence. And so, really, the blueprint for their genetic code was sort of putting the odds against them from the very start. Some people might be lucky and never have a psychotic break. Other people who are vulnerable experience some sort of outside trauma or other stimuli and then suddenly have psychosis.

On a spectrum of mental illness

Peter Galvin had his diagnosis shifted from schizophrenia to bipolar disorder and back again and then back again. He really shows a good gray area there. But really more to the point, there are genetic studies now, more every month, it seems that show that a lot of mental illness exists on a spectrum and that bipolar disorder and schizophrenia, in particular, seem to have a lot of overlap in that spectrum — and that autism might as well. It’s really fascinating to see that. It’s also fascinating to see that that spectrum of mental illness even exists in people who might not consider themselves mentally ill. There is a large number, large percentage, maybe 5, maybe 7 percent by some studies of people who have reported hearing voices, but who would never consider themselves mentally ill. So it’s possible that this spectrum goes even further than we thought. …

This is one of the most amazing and most promising elements of Hidden Valley Road, which is a researcher named Robert Freedman, who has also been studying the families since the 1980s. He has identified one particular gene, again, one of hundreds, not a silver bullet, not a smoking gun gene, but one gene that really seems to have something to do with brain function that is related to schizophrenia. And he sees that that gene is really crucial, not just in brain development, but in brain development in utero. Back when, before you were even born, your body is building the plans to build and develop your brain over many, many years. And his hypothesis is: What if we strengthened that gene in utero with some sort of nutritional supplement?

And he arrived at choline. And sure enough, the FDA has signed off on this and recommended that expectant mothers ingest as much of this very safe, you know, nutritional supplement for what they call for brain health. But really, what it is, is potentially something that might make you less vulnerable to acute mental illness. Now, we don’t know if this is true. We don’t know if it will help. But we may know in several years if it does.

On reporting the Galvins’ story

A mutual friend of mine and Lindsey Galvin introduced us. Lindsey is the youngest of the 12 — and he had known them for years. And the two sisters, their 10 brothers and two sisters, the two sisters, Margaret and Lindsey and the family had been talking for years about trying to let the world know about their family’s story. They knew, first of all, they knew how unique the family was. But, also, there were many mysteries that they were trying to solve themselves about their family, a lot of family secrets that nobody was talking about. And finally, they decided they needed an outsider, an independent journalist who could take the story wherever it led, that reporter, and they talked to me about it.

I was skeptical at first because I thought that these were very private concerns and that people’s medical information, the people in the family might be sensitive about privacy laws and such. But really, over the course of a year, I talked with every single living member of the Galvin family and they were all up for it. They were ready. They really believed their story had something that could be of comfort to other people who are suffering. And I really would like to believe the Hidden Valley Road offers that to people….

These are challenging times, independent of mental illness. I think that this is an example of a family that really experienced not just one but two or three or four different horrors all at once and came out the other side. It’s about not turning inward when the worst happens in life, it’s about reaching out to each other and understanding the value of family and the value of not closing yourself off to possibilities. I really believe there is a lot of hope and inspiration in this story that people can take away from it independent of mental illness issues.