Hidden Valley Road by Robert Kolker is a fascinating piece of journalistic nonfiction following the Galvin family and how their family contributed to groundbreaking discoveries in the scientific and medical world of schizophrenia and mental health. Don and Mimi Galvin appeared to be living the American dream. Don was highly recognized in the Air Force, Mimi beamed over her twelve children, and all seemed perfect. Behind closed doors, it was a different story. Six of the twelve Galvin siblings suffered from schizophrenia and eventually the family became science's greatest hope in understanding the disease and methods to treat it.
As fascinating as this book is, it is heartbreaking. Reading what the Galvin family endured because of a disease that was often hard to read and even comprehend. The youngest siblings, Margaret and Mary, bring a large voice to the story. They both share their memories and experiences growing up in a household with siblings suffering from psychotic breaks and episodes and a mother who was focused mostly on the "sick" children, leaving the "healthy" children to take care of themselves.
Hidden Valley Road is also incredibly frustrating to read. In the years the Galvin brothers were diagnosed with schizophrenia, the stigma surrounding the disease was immense. It is difficult to read the book and not want to reach through the pages and shake the doctors who treated them and their parents who tried to ignore and hide their disease. One of the resounding things that stood out to me was how when something goes wrong, there is a human desire to understand why it went wrong and to put the blame somewhere. Mimi struggled as a mother to understand why her sons were falling ill. She often blamed Don's side of the family and doctors initially blamed Mimi, saying a schizophrenic mother often brings on the affliction in children. (A term coined in the 1950s-1970s meaning a mother induced the illness on their children.)
Parts of Hidden Valley Road were a bit slow for me to slog through and were heavy on the scientific findings of schizophrenia, but they were also necessary to understand how the Galvin's DNA donations helped doctors learn more about the disease. I found myself more captivated with the stories of the other siblings and their experiences growing up in the Galvin household. The youngest sibling, Mary, was the catalyst for getting the Galvin family involved in the scientific studies surrounding the disease. It was remarkable to learn how studying a family of their size with a mix of siblings that had and did not have the disease made such strides in how doctors understood it.
"Maybe, she thought, her family's story was not just about the secrets, not just about a disease-but about how all of that experience...might make life better for others....a sense that their sacrifice may make it better for future generations. Isn't that how science works-how history works?"
"We are more than just our genes. We are, in some way, a product of the people who surround us-the people we're forced to grow up with, and the people we choose to be with later. Our relationships can destroy us, but they can change us, too, and restore us, and without us ever seeing it happen, they define us. We are human because the people around us make us human."
"Feelings were scary in the Galvin family, Silvern said. There had been too many out-of-control horrors for it to be otherwise."
"You are the only variable in the situation you have control over."
"They have been warehoused where nobody can really deal with them," he said. Here was the real reason, he thought, why big pharma could afford to be fickle about finding new drugs for schizophrenia-why decades come and go without anyone even finding new drug targets. These patients, he realized, can't advocate for themselves."
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The Great Pretender by Susannah Callahan