Hidden Valley Road: Inside the Mind of an American Family (23 page)

No, of course not.

Why didn’t she just leave the closet?

Because there were three boys in there with her.

And then Silvern took a risk and used the word.

“They raped you,” Silvern said.

Lindsay was not scandalized. She was, if anything, relieved. Someone was giving what happened a name.

The defining of terms was like a glass of cold water splashed on her face. Sexual abuse was sexual abuse. Rape was rape. Being a victim was being a victim. She couldn’t escape the closet that night for the same reason that she couldn’t leave Jim’s cabin at the top of the Manitou Incline: Because someone more powerful was violating her trust, victimizing her, making it impossible for her to do anything other than what he wanted her to do.

Next came the careful unpacking of the details. Where the particulars of every incident were once completely off the table, now reciting all that dreadful minutiae was helping Lindsay regain a sense of control. The details reinforced how unrealistic some of her self-blaming notions had been. (Unrealistic, yet understandable—children usually have no way of processing trauma beyond their own experience, and so, all too often, they blame themselves.) And to articulate all of that in front of Silvern—seeing how it was possible for somebody who really cared about her to still see her strengths and respect her and know who she was, even though they knew everything about what she’d been through—was a first for Lindsay. In a way that no one in her family ever could, Silvern gave Lindsay a place where she could own her own emotions and express them on a regular basis.

Talking with her therapist about being raped by those boys was, in itself, a tremendous step for Lindsay to take. It also was a perfect dress rehearsal for what had to come next. She would have to be just as transparent with her family as she had been with her therapist. Only this time, the subject would be Jim.

They were in the car, Lindsay and her mother, going to Mimi’s friend Eleanor Griffith’s house. They pulled up to the house. They parked and walked slowly to the entrance. They saw that Eleanor was not home yet.

They were alone, mother and daughter, with a stolen moment. This was when she chose to talk about it.

Lindsay had already been opening up more to Mimi, writing her long, philosophical letters from college about the family and the illness. She wrote about what it was like to grow up around Donald, and how no one acknowledged the pain that caused her. She wrote about the state of fear she inhabited in those years. Mimi’s reaction was always the same. She would acknowledge what her daughter was saying and then urge her to move on—to forgive—always reminding her that there was someone else out there who had it worse. It was superb maternal jujitsu: paying lip service to relating to her daughter’s experience when in fact she was obliterating it, draining it of all meaning, blotting it out.

So it shouldn’t have surprised Lindsay when, standing there in front of the Griffiths’ house, she started to tell her mother that she had been sexually abused by her brother Jim countless times over several years—and her mother responded by saying that when she was a girl, the same thing had happened to her.

IN THE OFFICIAL
version of Mimi’s enchanted New York City childhood—the story she’d raised her daughters on, and related to friends and neighbors proudly—Mimi’s stepfather, the painter Ben Skolnick, was her tutor in music and art. While her mother worked in the garment business in Manhattan, her stepfather helped her appreciate culture in a way no one ever had before. All of that was true. He played Tchaikovsky for her on the record player. When she was laid up with a sprained ankle, he suggested
Carmen
.

But it was also true that Ben drank, and it was also true that he took liberties with Mimi. When Lord & Taylor started selling Mimi’s mother’s A-line skirts, she couldn’t manufacture them fast enough, and she started spending most weeknights in the city—leaving Mimi at home with her stepfather. That was when Ben Skolnick advanced on her.

Mimi was deliberately light on details, and Lindsay did not press her for any. But it was clear that he’d molested her, touching her inappropriately.

As she told Lindsay this, Lindsay sensed some of the stray threads of her mother’s childhood story coming together. She understood now why the marriage between Mimi’s mother and Ben did not last—why they lived apart after the war. And Mimi said one thing that, in an instant, made Lindsay think of her mother entirely differently. Mimi said that she finally told her mother about it when Ben started to prey on her little sister, Betty.

Lindsay knew something about the nerve it would have taken a girl in that position to speak out—to put her own credibility on the line to save her sister. If her mother had really done that, then Lindsay must not know her as well as she thought she did.

That exchange with Mimi might have been the most emotionally complicated moment in Lindsay’s life. Part of her was knocked flat by her mother’s candor, and after hearing her mother’s story she felt closer to her than ever. But at the same time, Lindsay felt she had been denied something—her own misfortune was once again preempted by someone else’s. Mimi was talking about her own experience, skipping right past the details of what Lindsay was saying about Jim. Lindsay needed Mimi to take her side, to tell her that what Jim had done to her was wrong.

But Mimi did not do that. She had never picked the side of a healthy child against a sick one, and she wasn’t going to start now. Instead, Mimi started talking about how Jim was mentally ill.

Lindsay flushed. To her, schizophrenia wasn’t an excuse for what Jim had done to her. Certainly no mainstream researcher or psychiatrist would say that it was Jim’s psychotic delusions that made him a pedophile.

But Mimi was not willing to separate the two issues. Lindsay, though she expected as much, was still deeply hurt. What made it so hard for her mother to sympathize with anyone other than her boys? It was as if she had used up all of her compassion on the sick children, even Jim, leaving nothing for anyone else.

But that day, Lindsay was ready. She told her mother she would never agree to be in the same room as her brother again.

Jim wasn’t supposed to be there. Her parents had assured her he would not be.

Lindsay was back on Hidden Valley Road, visiting for a Sunday dinner after a long absence—her first time back since that night outside the Griffiths’ house. Both of her parents were there. So was Joe, medicated and somber and, unlike his other sick brothers, acutely aware of his own sickness. A peaceful evening for the Galvins, until Jim walked in.

Her father asked him to leave at once. “Jim, you don’t belong here, please go home.”

“Why don’t I belong here?” Jim said.

Mimi said nothing.

Lindsay bit her lip. It didn’t help. She lost it. She stood up and started screaming.

“You fucking asshole! You sexually abused me!”

Jim was not in good shape. His wife and son had left him, he was heavily medicated—and, per one of the side effects of the medication, well on his way to becoming obese. But he was not conceding anything, and he was more than willing to retaliate. He picked up a guitar that was lying around and broke it in half. He called Lindsay a liar, and he started yelling and screaming.

“That’s not true! You’re imagining things!”

But Jim could read the room. He saw no one was listening to him. And then he saw his father, telling him to get out and that he never wanted to see him there again.

Jim left. Lindsay spent the rest of the evening in tears. Her parents left her alone, heading back to the kitchen to do the dishes. Joe comforted her. “You’re not lying,” he said, holding her. “I know you’re not lying.”

That was what Lindsay would think of most in the years that followed—how her brother Joe believed her, and how her father had, too.

New imaging equipment—including CAT and PET scanners—has demonstrated physiological differences in the brains of some schizophrenia patients. And now, using this and other technology, NIMH, under staff psychiatrist Lynn DeLisi, is attempting to identify a genetic marker in families where more than one member suffers from schizophrenia….

Both healthy and ill family members are needed for the study. Patients will continue to be treated by their regular physicians and participants will be paid.

Prospective participants may call Dr. Lynn DeLisi: 496-3465.

The Washington Post,
July 20, 1984

From her seat at the long handmade wooden table in the kitchen on Hidden Valley Road, Lynn DeLisi saw at once the burden that Mimi had been bearing all these years.

Her husband was home and frail. He could help around the house and even drive, but each night he would go to bed wondering if he would remember what he’d read the next day.

Donald, the oldest, was home more or less all the time now, too. Three other sick sons, Joe, Peter, and Matt, roamed in and out of the house, between the hospital and home and their own apartments, which they’d inevitably leave or get tossed out of. Even Jim would wander by from time to time, too, before Don would notice him and demand that he leave.

The violence was a little less frequent these days. They were all getting older now, and they all were more consistently medicated. It was up to Mimi to keep them all active, manage their care, shuttle them to appointments, dispense their meds.

Given all that, DeLisi was amazed by the good cheer the Galvin matriarch displayed. “You can’t be heartbroken
every
day,” Mimi liked to say.

IN THE YEARS
before Lynn DeLisi walked through the Galvins’ door, there was still no single theory of schizophrenia that was universally accepted. The precise mechanism of the disease remained a mystery, and many of the same nature-nurture battles continued. But without any great fanfare, some things were slowly changing.

After three decades, the schizophrenogenic mother theory was losing its hold. In 1982, an Australian psychiatrist named Gordon Parker published
a review of schizophrenogenic-mother research in
The
Journal of Nervous and Mental Disease,
concluding that, while distant and controlling mothers no doubt existed, there was no evidence that they were more likely than anyone else to have children with schizophrenia. The next year, Chestnut Lodge—the institution that, under the direction of
Frieda Fromm-Reichmann, steadfastly ignored all calls to treat schizophrenia as a biological disorder—experienced a dramatic reversal. Thomas McGlashan, who had joined the hospital as a therapist in the 1970s, went public with
a study of the case records of every patient treated there between 1950 and 1975. His conclusion: Only one third of Chestnut Lodge’s patients were moderately improved or recovered. If, like the psychoanalysts of Chestnut Lodge, you believed that the right course of therapy could cure almost any psychotic patient, a 33 percent success rate was not something to be proud of—especially not when the pharmaceutical industry was claiming a much higher success rate in treating the symptoms of psychosis. “Frieda…embarked on a grand experiment,” McGlashan said at the time. “The data is in. The experiment failed.”

After decades of debate, the thinking about schizophrenia seemed 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.

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.

Why some siblings with sensory gating issues ended up manifesting the symptoms of schizophrenia and others did not was still a mystery. Freedman’s next step was to try to locate the specific part of the brain responsible for sensory gating. Thanks to DeLisi, he now had access to a family with an unfathomably, overwhelmingly profound manifestation of schizophrenia.

IN FEBRUARY
1986, months after her first visit with the Galvins,
DeLisi used data from her families to confirm what Richard Wyatt’s NIMH team had discovered about schizophrenia’s correlation to large brain ventricle size. A year later, she used the data in a study
testing a possible link between schizophrenia and human leukocyte antigens, or HLA, a gene complex involved in the regulation of the immune system. No such link was proven. Still, the multiplex family database had begun contributing to the body of knowledge about the disease. As far as DeLisi was concerned, this was only the beginning.