This could be the most mentally ill family in America.

Hidden Valley Road by Robert Kolker chronicles the life of the Galvin family in parallel with the understanding and treatment of schizophrenia. The Galvins had twelve children, six of them diagnosed with schizophrenia. The children were diagnosed in the sixties and seventies, at a time when scientists and doctors understood little about the illness. It was an era of institutionalisation, lobotomy and shock therapy. At that stage, clinicians predominantly focused on ‘nurture’ as the cause of schizophrenia, however, by the eighties a group of researchers were looking for genetic markers to explain the illness.

After World War II, Don and Mimi Galvin began their pursuit of the American dream – buoyed by young love and ‘…limitless hope and confidence’, all they wanted was a large, happy family and a prosperous, productive life. Between 1945 and 1965, they filled their house on Hidden Valley Road with 12 children – ten boys and two girls. Don and Mimi had high expectations, and the children were encouraged to achieve at school, at sport, and at music. However, by the mid-1970s, six of the ten Galvin boys, one after another, were diagnosed as schizophrenic.

It is hard enough to individuate oneself in any family with twelve children; here was a family that was defined by dynamics like no other, where the state of being mentally ill became the norm of the household, the position from which everything had to start.

For the most part, Don and Mimi tried to ‘keep up appearances’, hardly surprising given that at that time, mental illness was frequently blamed on ‘poor parenting’, specifically the mother who ‘…was responsible for the ‘severe early warp and rejection’ that rendered a schizophrenia patient ‘painfully distrustful and resentful of other people.’ The Galvin household became a place of violence, the boys fighting with each other, raging at Mimi or the girls, or acting so strangely that neighbours would call the police.

For a family, schizophrenia is, primarily, a felt experience, as if the foundation of the family is permanently tilted in the direction of the sick family member.

While the boys were in and out of institutions, a handful of researchers were dogged in their attempts to understand schizophrenia, and as a result collected DNA samples from the Galvins who, after all, provided a remarkable case study. Research projects stop and start, depending on where the funding is, but those initial DNA samples were continuously drawn on over the decades, unbeknownst to the family.

In 1990, a breakthrough came with the Human Genome Project, which mapped the structure, organisation and function of every single human gene. The Galvin’s DNA was instrumental in identifying faulty genes and mutations associated with schizophrenia, particularly those responsible for the production of certain naturally occurring brain chemicals, brain structure and the central nervous system. Ultimately, schizophrenia was recognised as a brain disease, and advances were made in its treatment, prediction, and even eradication.

Although I found the science element of this book very interesting, what sets it apart is the story of the family, and the impact of the diagnoses. The trauma was significant for both those with a diagnosis and without –

To complain or cry or show any emotion at all, Mary knows, will send the message that something might be wrong with her, too.

The detail of the boys’ behaviours was disturbing, as was the significant physical and emotional violence at Hidden Valley Road, the institutional abuse, and sexual abuse suffered by a number of the children. Like any trauma, it continues to reverberate and those children without a diagnosis carried a heavy sense of shame about their family for decades.

It is remarkable how recent much of the work around schizophrenia has been, with many breakthroughs made after 2010. It takes time for clinicians to catch up with the science, and adjust the way they diagnose and support people with schizophrenia. The work continues – prominent US psychiatrist, Thomas Insel, has called for the research community to redefine schizophrenia as ‘a collection of neurodevelopmental disorders’ rather than a single disease. Insel challenged that schizophrenia might not be a disease at all, but a symptom, citing the fact that decades ago, ‘fever’ was considered one disease –

“Psychosis is just what the brain does when it’s not working very well.”

There is much sadness in the Galvin story. As Kolker identifies, ‘…one of the consequences of surviving schizophrenia for fifty years is that sooner or later, the cure becomes as damaging as the illness‘. But Kolker finishes the book with a sense of hope, for both the Galvins and for all families that are managing schizophrenia.

3/5 Interesting, particularly if you like reading about genetics.

The concept of the schizophrenogenic mother caused Mimi great distress. She described her feelings of shame and confusion –

…I thought I was such a good mother. I baked a cake and a pie every night. Or at lease had Jell-O with whipped cream.

Snickers cake gets a mention.