Robert Kolker’s non-fiction book Hidden Valley Road tells the story of Don and Mimi Galvin, whose large American family was torn apart by schizophrenia. Published in 2020, it was an instant best-seller and Kolker has received thousands of messages from all over the world from those impacted by the illness and wanting to share their own stories. To find out more, Speak Up met with Kolker. He began by explaining that the Galvins’ background was not what he’d expected.

Robert Kolker (American accent): This was an upwardly-mobile aspirational family. The twelve children were born during the American Baby Boom, 1945 to 1965. In the 60s, Colorado Springs was a groovy town; with enlightened parents, everybody there was highly educated, most [were] liberals, and because the Air Force academy was brand new, they were bringing in young post-war progressives to teach at the academy. 

FALLING APART

The eldest sons, Donald, Jim and then Brian started to show real problems in the late 60s and early 70s, as Kolker explains.

Robert Kolker: There were signs of trouble early with Jim and Donald, but the family turned a blind eye to it. When Donald is twenty-five he tries to kill his wife and Jim’s wife is reporting that he’s having delusions. And the parents are at this point terrified, but they are afraid to take any major steps because they know that trying  to institutionalise their sons is going to mean destroying the future for the rest of their family, that the community will turn on them, the father’s career could be derailed. They felt like they had no choice but to keep it quiet for as long as possible. But of course things got worse and worse. Until one day, out of the blue, Brian kills his girlfriend and himself, and there’s no way they can hide anything anymore. 

LYNN DELISI

Mimi tried hard to keep the family together even though the younger children were suffering abuse. As Kolker explains, back then, doctors often blamed the mother for her children’s mental illness. Sexism was evident in psychiatry too, when Lynn Delisi became one of the only female psychiatrists determined to find out whether there was a genetic basis for schizophrenia.

Robert Kolker: Not only was there huge misogyny in science, but there was this very strong sense from the therapeutic community that bad mothering caused schizophrenia. And this was accepted wisdom for decades. Lynn (Delisi) became determined to search for the genetic proof, and she realised that the best way to do that, in the late 70s and the early 80s, was to study large families with huge incidences of schizophrenia.

THE GENOME PROJECT

The Galvins became the biggest family in Delisi’s collection of genetic material. However, her funding was cut as research trends shifted away from families. The Human Genome Project, launched in 1990, used individual donors to generate the first sequence of the human genome. It was hoped that it would reveal one defective gene that caused schizophrenia. It did not.  

Robert Kolker: The Human Genome Project led to the identification of more than a hundred genetic mutations that might have something to do with schizophrenia. And so, families like the Galvins and families like them, are becoming more interesting again. Genetic material of families can tell us more about the condition and how it takes shape in the brain. We’re not looking for just one bad-guy gene anymore, we’re looking for a behaviour or a trend in how the mutations affect brain function

TREATMENTS

With the focus back on families, there may be new treatments developed for schizophrenia, says Kolker.

Robert Kolker: It doesn’t cure them, it simply calms them. But, I do have optimism. The medical community understands now that families of people with mental illness need to be supported. And also there is a huge focus now on early intervention to prevent psychotic breaks. You can teach them to self-monitor their symptoms, you can medicate them a minimal amount that allows them to retain some function in their lives, and keep from getting worse.

HUMAN BEINGS

After the publication of the book, Kolker received thousands of emails from people sharing their own experiences of having patients or loved ones with the illness. Kolker says that this fulfilled the goal of the book. 

Robert Kolker: Half the time we treat them like monsters, and then the other half we treat them like special mystical creatures who have incredible insight into the world. And my goal with the book was to write about them as human beings like you and me who happen to have a mental health condition.