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.
* * *
—
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 times—allowing the genetic code, once the great unexplored realm of human biology, to be deeply probed for the first time. With these new tools, researchers elsewhere already had isolated the gene for one disease: phenylketonuria, or PKU, which caused intellectual disabilities. Others were going after Huntington’s disease. But those illnesses were a far cry from schizophrenia, which almost everyone agreed had to be the work of not just one mangled gene but many. A disease as complex as schizophrenia probably had a genetic makeup no one could completely see with the tools available at the time. The thought of traveling the country, collecting DNA from families, struck many of her colleagues in other labs at NIMH as a fool’s errand.
But DeLisi was as sure as ever that multiplex families held the answers. She didn’t mind if others thought of her as out on a limb. “Lynn would think along lines other people wouldn’t,” Gershon remembered. “She could go in different directions.”
She found her first family without having to leave the hospital. A patient Gershon had been treating in his clinical practice happened to have a brother who had also been diagnosed with schizophrenia. DeLisi learned that the brothers’ parents, Jim and Carol Howe, had been among the founders of the National Alliance for the Mentally Ill (now known as the National Alliance on Mental Illness), an advocacy organization that started in 1979 in Minnesota and was expanding with new branches around the country. If DeLisi wanted to find families quickly, she thought, NAMI would be the perfect ally.
DeLisi contacted regional chapters of NAMI and asked them to advertise her study in their newsletters. The families that came forward generally had two or three people with schizophrenia; one or two families had as many as four. As more responded, DeLisi hired a social worker to visit families she could not meet with personally. But when she heard about the Galvin family of Colorado Springs, DeLisi knew she had to fly there and see them herself.
As she walked through the door of the house at Hidden Valley Road, she couldn’t help but recognize a perfect sample. This could be the most mentally ill family in America.
* * *
—
DELISI ASKED EVERYONE in the Galvin family, even those who were not diagnosed mentally ill, to participate in psychiatric interviews to confirm or rule out a diagnosis for each of them. Then she drew blood samples in hopes of noticing something in this family’s genetic makeup that might indicate a propensity toward mental illness. Some family members might be carriers who did not get ill, she believed; the markers could be present in everyone.
All the sick brothers participated without much of a fuss; Mimi had made DeLisi’s work easier in the way she had always closely supervised the care of all of her sick sons. Among the six well siblings, everyone agreed except for Richard—the sixth son, once the teenage schemer, now a mining investor in Denver—who was still too unnerved by the family illness to engage in any of his brothers’ treatments. (John, the third son, now a music teacher in Idaho, had his blood drawn remotely and sent to DeLisi’s lab.)
Lindsay and Margaret came away feeling hopeful that the research might lead, someday, to a breakthrough. The look on Mimi’s face, meanwhile, was practically beatific. The most important breakthrough, in her view, had already happened. She had been waiting for decades for someone like Lynn DeLisi to come knocking on her door. Now she was finally here.
* * *
—
ROBERT FREEDMAN’S FIRST visit to Hidden Valley Road took place very soon after Lynn DeLisi’s. On that day—and on subsequent visits by various Galvins over many years to Freedman’s lab in Denver—Freedman and his team from the University of Colorado Medical Center’s psychiatric research division recorded the Galvins’ brain waves, drew their blood, and administered questionnaires. As he got to know the family, Freedman marveled at how Mimi kept the boys at home much longer than many families would have. “She was delightful,” he said.
Freedman was stunned by the decision to send one of the daughters, Margaret, away to live with another family. How horrible things must have been at home, he thought, for Mimi and Don to even entertain such a drastic decision. He saw that Don’s health was declining and that the sick boys were a handful. But above all, he was struck, as DeLisi had been, by Mimi’s determination to care for them all. “Medications in those days made the boys very stiff and unresponsive. So they kind of sat there like hunks and they weren’t talkative, and she was left to manage them. She was running a rooming house.”
DeLisi had tipped Freedman off to the Galvins, knowing that he had been looking for families to test his sensory gating theory. Freedman had spent the early 1980s running his double-click studies, designed to measure the brain’s ability to filter information. He continued to believe that sensory gating was a mechanism in the brain, something genetic that made certain people susceptible to schizophrenia. And he felt as if he was getting warmer. In 1984, just before meeting the Galvins, he had studied the gating abilities of schizophrenia patients and members of their immediate families, and he found that half of the immediate family members had the same gating deficits as the family members diagnosed with schizophrenia. Here was another sign that he was on the right track—evidence that sensory gating was hereditary.