Mary is a cross-hatch of thick streaks of soft pink, inflected here and there with black. And Margaret’s self-portrait is similar to her sister’s, only with less pink and more vivid rust-colored flecks.
When, a few years before Mimi died, Margaret helped relocate Peter to his assisted living facility, that inspired another piece, Moving Peter, that seemed like a step forward for her—complex and layered and full of the feelings she found so hard to process any other way. “It just became this emotional outpouring,” Margaret said.
This was the painting Nancy Gary bought, snapping it up before an old classmate of Margaret’s from the Kent Denver School had the chance to buy it.
CHAPTER 43
Our culture looks at diseases as problems to solve. We imagine every ailment to be like polio: hopelessly incurable, until a miracle drug comes along that can wipe it off the face of the earth. That model, of course, only works some of the time. Too often, scientists get lost in their own silos, convinced their theory works to the exclusion of everyone else’s. Whether it’s the Freudians and the Kraepelinians or the family dynamics specialists and the geneticists, the unwillingness to collaborate leaves everyone vulnerable to confirmation bias—tunnel vision. The schizophrenia researcher Rue L. Cromwell described this dilemma in the 1970s: “Like riding the merry-go-round, one chooses his horse. One can make believe his horse leads the rest. Then when a particular ride is finished, one must step off only to observe that the horse has really gone nowhere. Yet, it has been a thrilling experience. There may even be the yen to go again.”
But there is another model for progress—the opposite of the polio model—one in which solutions are not the same as breakthroughs. Progress comes gradually, often painfully, in fits and starts, and only after many people spend their entire careers failing and quarreling and, finally, reconciling. Sooner or later, some ideas fall away as others take hold. And, perhaps only in hindsight, we can see how far we’ve come, and decide on a path forward.
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.
There are, however, more subtle changes—as if the atmosphere around the disease has changed a little, charged with a new sense of tolerance. Anti-psychiatry, in its latest incarnation, has become a movement concerned with legitimizing and normalizing the concept of hallucinations—a Hearing Voices Movement, not unlike the movements to legitimize deafness and blindness not as disabilities but as differences. Neurodiversity—a term used more often for other conditions, like autism—is a concept that was never considered when treating any Galvin brother decades ago. There is a robust anti-medication movement now—activists armed with studies showing that many schizophrenia patients experience favorable long-term outcomes without prescription drugs. This movement has support from many therapists unhappy with the notion of psychiatry as a pill mill, and nostalgic for the gilded age of psychotherapy, when a doctor could spend more than just a few minutes with a patient before sending them off with prescriptions.
If there is a significant change, it’s that more people are acknowledging the elusive quality of schizophrenia diagnoses, aware that there is no one-size-fits-all definition. Each passing year brings more evidence that psychosis exists on a spectrum, with new genetic studies showing overlap between schizophrenia and bipolar disorder, and bipolar disorder and autism. The most recent research suggests that a surprising number of us may be at least a little bit mentally ill: One meta-analysis, published in 2013, found that 7.2 percent of the general population has experienced hallucinations or delusions; another study in 2015 put the figure at 5.8 percent. A third of the people counted in the latter study only had one episode, while others had more persistent symptoms. Results like this suggest, at the very least, that the medical response to aberrant behavior should be more discerning about who needs traditional treatment and who might benefit from watching and waiting. The stakes in such decisions are high: Researchers have the evidence now to confirm that each successive psychotic break causes more permanent damage to a brain, a further loss of gray matter necessary for processing information.
The grave dilemma of neuroleptic drugs, sadly, remains the same: Medication, taken regularly, can stave off further breakdowns (while risking long-term side effects), but there is also ample evidence that patients who remain on drug regimens relapse as often as those who don’t. While the surviving Galvin brothers are as dependent on neuroleptics as ever, the biggest change for those who come after them could be that medication and therapy are not an either/or choice. Even the most traditionally trained schizophrenia researchers are pushing what Jeffrey Lieberman, the chief psychiatrist of Columbia University Medical Center of the New York-Presbyterian Hospital, calls an “early detection and intervention model of care.” A relatively new wave of research supports the effectiveness of so-called “soft interventions”: a mixture of talk therapy and family support, designed to keep the amount of medication to a minimum. For decades, countries like Australia and Scandinavia have used this more holistic approach and reported success. (You could argue that Michael Galvin found his soft intervention inside the Rock Tumbler on the Farm, his commune in Tennessee—assuming he was ever really at risk to begin with.) The challenge is being able to tell who can be successfully treated by neuroleptic drugs, who might not be helped much at all by those drugs, and who, in the long run, might suffer from the drugs as much as the disease.
For more researchers, the watchword is prevention—the challenge of accurately diagnosing people at risk of developing schizophrenia before their first psychotic break. Lieberman at Columbia is developing new techniques to measure the function of the hippocampus. In time, new drugs could stave off the onset of schizophrenia—just like the drugs being developed now that might fend off the symptoms of Alzheimer’s disease. And then there’s choline. In Denver, Robert Freedman is following up on his first long-term choline study with a new trial—with support from Sam and Nancy Gary, among others—tracking children from the moment their expectant mothers start taking the choline supplements, up through the time their children reach post-adolescence, the prime years for the onset of schizophrenia. As he suggested at his award ceremony in New York, Freedman will undoubtedly not be alive when the results come in. Neither will the Garys or many of the other donors. “They’re a bunch of builders, developers—oil barons like Nancy,” Freedman said. “They said, ‘Oh, yeah, let’s go all in. That’s how we run our businesses.’ ” If it doesn’t work out somewhere along the way, they told Freedman they’d all have one dinner and say it was a nice ride.