Six of the Galvin boys took ill at a time when so little was understood about schizophrenia—and so many different theories were colliding with one another—that the search for an explanation overshadowed everything about their lives. They lived through the eras of institutionalization and shock therapy, the debates between psychotherapy versus medication, the needle-in-a-haystack search for genetic markers for the disease, and the profound disagreements about the cause and origin of the illness itself. There was nothing generic about how they each experienced the illness: Donald, Jim, Brian, Joseph, Matthew, and Peter each suffered differently, requiring differing treatments and a panoply of shifting diagnoses, and prompting conflicting theories about the nature of schizophrenia. Some of those theories could be especially cruel to the parents, who often took the blame, as if they’d caused the disease by something they did or did not do. The entire family’s struggle doubles as a thinly veiled history of the science of schizophrenia—a history that for decades took the form of a long argument over not just what caused the illness, but what it actually is.
Starting in the 1980s, the Galvin family became the subject of study by researchers on the hunt for a key to understanding schizophrenia. Their genetic material has been analyzed by the University of Colorado Health Sciences Center, the National Institute of Mental Health, and more than one major pharmaceutical company. As with all such test subjects, their participation was always confidential. But now, after nearly four decades of research, the Galvin family’s contribution finally can be seen clearly. Samples of their genetic material have formed the cornerstone of research that has helped unlock our understanding of the disease. By analyzing this family’s DNA and comparing it with genetic samples from the general population, researchers are on the cusp of making significant advances in treatment, prediction, and even prevention of schizophrenia. Until recently, the Galvins were completely unaware of how they might be helping others—oblivious to how their situation had, among some researchers, created such a feeling of promise. But what science has learned from them is only one small portion of their story. That story begins with their parents, Mimi and Don, and a life together that took flight with limitless hope and confidence, only to curdle and collapse in tragedy, confusion, and despair.
What would progress look like for schizophrenia? If the Galvin boys had been born a half century later or more—growing up today, let’s say, and not in the 1950s or 1960s—would their treatment be any different now? In some respects, little has changed. The market for new schizophrenia drugs remains sluggish. Antipsychotic drugs require expensive and risky testing, even in the early trials, where rats are no substitute for humans. And the same nature-nurture squabbles over the source of the illness have continued, if at a more granular level. Where the conversation once was about Freud, now it’s about epigenetics—latent genes, activated by environmental triggers. Researchers now argue about what might be playing the part of a trigger—something ingested, like marijuana, or infectious, like bacteria? Researchers have come up with a variety of other suspects—head injuries, autoimmune diseases, brain-inflammation disorders, parasitic microbes—all of which have their adherents and detractors. Everyone still picks their horse on the merry-go-round, and very few are willing to stop taking the ride.
Robert Kolker, Hidden Valley Road: Inside the Mind of an American Family, 2020.