Much of what we know today about schizophrenia we have one family to thank, the Galvins. Originally from Colorado Springs (United States), hers is a tragic story: six of the twelve children that made it up were diagnosed with the disease in an era in which doctors did not know very well how to deal with it.
In 2020, the journalist Robert Kolker rescued his story in his work Hidden Valley Road: Inside the Mind of an American Family, in which he exposes the intimate relationship between medical research and the human cases behind it, often much less visible. 20 minutes has contacted the author to learn more about the writing of the book and about his own reflections on science and mental health.
How did you decide to write about the Galvins?The Galvin family had decided, after many years, that they were looking for a freelance journalist to tell their story, and a friend of mine who knew them thought of me from my years as an investigative journalist. The challenge, then, was that he had to learn about science. He was not only going to talk about the disease, but also about the very difficult events that this family had to live through.
So, what was the point of the story that interested you most initially?I thought of two things. The first was how so many terrible things could happen to just one family: so much abuse, so much tragedy. The second was how the hell that family had stayed together through the years, and why not all the children left that home, never to return. This was the question that drove me when I was working on the book: I wondered why the sisters came back.
In fact, some members of the family were involved in the writing of the book.Yes, I interviewed them, but it was a journalism job, so I had to maintain my independence.
And what was your reaction when it was finished?They were relieved that it was a well-intentioned and fair story, and not something sensational.
The book balances the more scientific and the more humane sides of the Galvin story. How is that balance achieved?I wanted to make sure that family history provided a context to help understand what we knew and didn’t know about mental illness, but at the same time I didn’t want a book for medical experts, I didn’t want it to be just a case study. I wanted it to be the emotional story of a family. I spent a lot of time trying to find the right balance, through many revisions. I did a book for myself, I wouldn’t just write about science and chemistry and genetics if it didn’t have direct relevance to family history. In other words, I wasn’t going to start a chapter by saying, “Here’s an interesting fact about schizophrenia.” Instead, it would have to be something directly related to what happened to the Galvins.
We often ignore that behind the history of scientific discoveries there is a human reality.In fact, I was under the impression that we had modern and effective medications for schizophrenia, just as we do for depression or anxiety. But I learned that the medication we have for schizophrenia is fifty years old and has significant limitations. It is something that shocked me, to think that there are still this many people who suffer in the 21st century.
So, after writing the book, what areas do you think we still need to learn about schizophrenia?We don’t know how existing drugs work. We don’t know what happens in the brain specifically in this condition. We don’t even know if it’s a single disease. We also don’t know how to make the brain ‘stronger’ to help prevent psychotic breaks before it’s too late, and this remains a major goal of researchers today. We now understand that schizophrenia is a developmental illness: you are born with a genetic vulnerability that may or may not develop into an active condition. Scientists and geneticists are trying to find ways for the brain to develop in a healthier way, even in the womb and during childhood, so that even if you have the genetic vulnerability, you can be healthy in later years.
In their day, the Galvins had to face prejudice and fear. What could have been different if all this had happened today?I think today there is a little less stigma and shame, and a little more openness. They could have gotten help years earlier than they did, and maybe they would have been better off that way. I also think we know better the limitations of the medication now, and perhaps the dosage would have been different and it would have produced fewer side effects.
What things have not changed?We are still very ignorant. There is still a lot of fear and ignorance about schizophrenia. People still believe that all patients have a bad personality or that they have to be hospitalized and that is simply not true. In the end, one of my goals was to tell people’s stories, and I had a great opportunity to tell a realistic story.
Finally, what can the Galvins teach us?I think, more than anything, it’s that despite going through the worst traumas of your life, the most terrible, that break the ideas of what a family should be, you can embrace your connections with other people and not let your pain devour you completely.