Hidden Valley Road - Inside the Mind of an American Family - Robert Kolker Page 0,102

to be consolidating around the physical nature of the disease. On The Phil Donahue Show in 1983, the NIMH psychiatrist E. Fuller Torrey, promoting the publication of his book Surviving Schizophrenia, one of the most popular and influential books on the illness that decade and beyond, showed the audience images of CT scans of healthy brains, contrasted with brains with enlarged ventricles of schizophrenia patients. “That’s the brain disease you are looking at,” Torrey said. In a study published that same year, Torrey and his colleagues on Richard Wyatt’s team had ruled out neuroleptic medications as the cause of these larger ventricles; it was the illness, not the medication, that seemed to create this difference. Anyone who could not acknowledge now that schizophrenia was physical, he joked, must be a little behind in their reading. “Unfortunately there is a segment of the psychiatric community that reads only the National Geographic,” Torrey said. “They have not got the word yet.”

This was the age of biological psychiatry now, with psychopharmacology not far behind. The latest DSM—the DSM-III, published in 1980—had narrowed the diagnostic criteria of schizophrenia to seem less like the syndrome it was and more closely resemble a specific illness. Based on this new criteria, even Joanne Greenberg, the author of I Never Promised You a Rose Garden, was said to have been misdiagnosed at Chestnut Lodge. The delusional teenage girl did not have schizophrenia at all, a team of researchers declared in 1981, but merely suffered from an episode of somatization disorder, once known as hysteria—fleeting hallucinations coupled with acute but temporary physical pain. Schizophrenia’s star patient might not have been that sick to begin with.

It was a little too early, however, to declare victory in the nature-nurture war. With talk therapy on the ropes, neuroleptic drugs were ascendant. These drugs changed the lives of thousands of people, helping them create some space between themselves and their delusions. In the popular imagination, and even among many doctors, neuroleptics were considered revelatory, like insulin for diabetes. But how could that be when schizophrenia itself remained ragingly mysterious, and the drugs themselves could be physically damaging? The drugs made some patients obese, others stiff and ungainly, others practically catatonic—this from drugs that had been hailed as miracles. For the chronically mentally ill, success had been defined down to a point where it was starting to look a lot like failure.

The only real, unambiguous beneficiary of drugs, of course, were pharmaceutical companies—all of which were still developing variations of the same original drug, Thorazine, that had been developed back in the 1950s. Then again, their very efficacy had seemed to stifle innovation. Why was it that every new drug brought to market had been either a version of neuroleptics like Thorazine or atypical neuroleptics like clozapine—with no disrupting third class of drug to spur forward progress?

For the first time, large numbers of families of the mentally ill were speaking up, forming advocacy organizations and a patient’s rights movement, trying to get across how their struggling daughters, sons, brothers, sisters, wives, and husbands felt betwixt and between—unreached by traditional psychotherapy, yet only pacified by drugs. For the many patients who felt ill-served by drug therapy, the decision to treat schizophrenia as a physical illness had yoked them to a treatment that held no hope of a cure. Their dilemma was real, and painful, with no clear answer. Those who rejected the pharmaceutical therapies argued, just as R. D. Laing and others in the anti-psychiatry movement had in the 1960s, that not every society anesthetizes its unconventional thinkers. But for most people with a loved one diagnosed with schizophrenia, it was almost impossible to witness what they were going through and see anything other than suffering—and even harder to think of what, besides powerful drugs, might help.

Until the illness could be understood better—the code of schizophrenia cracked, and a proper therapy produced that might lead to a cure—these patients, including the Galvins, were, sadly, a captive market.

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DELISI BEGAN COLLECTING the genetic material of families with schizophrenia as a researcher in Elliot Gershon’s lab in 1984, almost a decade after her tentative first days at NIMH. What once seemed impossible in her early years there was now tantalizingly within reach. Advances in molecular biology now made it easier to quickly copy a piece of DNA thousands of millions of