Hidden Valley Road: Inside the Mind of an American Family (24 page)

She sent the Galvins’ blood samples to the Coriell Institute for Medical Research, a facility in Camden, New Jersey, that preserves huge collections of cell lines from various diseases. This allowed for the possibility of others using the family’s DNA as a resource in dozens, even hundreds of future studies, conducted in labs around the world. DeLisi held fast to her belief that if she could find a marker for schizophrenia embedded in the genetic data of a family like the Galvins, schizophrenia might one day become like heart disease, an illness with particular benchmarks and risk factors that could be measured. In 1987, DeLisi was recruited away from NIMH by the State University of New York at Stony Brook, which offered her a professorship and a program of her own to run. She kept researching multiplex families there. She had forty already, including the Galvins. With a grant from NIMH, she steadily built on that list, eventually reaching one thousand families—more than anyone else had managed to assemble.

Then came several fallow years. Family studies were yielding amazing results in other diseases, including early onset breast cancer and Alzheimer’s disease, but there was no breakthrough for schizophrenia. In 1995, DeLisi published two studies drawn from her own pool of data on families.
The first seemed to confirm that the same genes responsible for schizophrenia are connected to other mental illnesses like depression or schizoaffective disorder.
The second failed to find a link between schizophrenia and bipolar illness, at least on one particular chromosome where bipolar illness appeared to be rooted. DeLisi remained confident that someone somewhere could find a genetic fingerprint in this pool—and show that nature, not nurture, determined this condition. “
I am not a firm believer in environment having an effect at all,” DeLisi told a reporter in 1999.

DeLisi’s work still had supporters. “
It is critical that we avoid premature disillusionment,” Kenneth Kendler, with the Medical College of Virginia, wrote in 1993. “The human brain is very complex and quite difficult to access.” But one of her old colleagues from Richard Wyatt’s lab at NIMH, Daniel Weinberger, started to suspect that researching families was a blind alley. “
More than ninety percent of the relatives of schizophrenics do not have schizophrenia according to current diagnostic criteria,” he’d told a reporter in 1987.

Weinberger had a point.
The odds of siblings in the same family sharing the condition are indeed low. On the other hand, a sibling of someone with schizophrenia still had
about ten times the chance of having the condition as a person in a family without the disease. Compared to the odds of inheriting many other disorders, these odds were extraordinarily high—
higher, even, than heart disease or diabetes. Seen that way, it would seem foolish
not
to keep looking at families.

AT NIMH, THE
search for more physical signs of schizophrenia continued, even as the direction of that research seemed almost aimless. Wyatt’s lab had used MRIs to examine identical twins with one sibling with schizophrenia, comparing the size of each twin’s hippocampus. Sure enough, in 1990, they found differences.
The hippocampi of the brains of people with schizophrenia were smaller than those without. This finding, like the one about enlarged brain ventricles a decade earlier, seemed to reveal something new about how the disease worked: The hippocampus helps remind you of where you are at any given moment, and it is less developed in the twins that, diagnosed with schizophrenia, have less of a grip on reality.

“We were high as a kite on this stuff,” remembered Daniel Weinberger, who coauthored both of those studies. “But there was a gnawing feeling in the back of my head.” All that this brain research was doing, he thought, was confirming different versions of the same idea: that a schizophrenic brain is physically different from a normal brain. For those who treated schizophrenia patients on a daily basis, this was hardly surprising. “You could talk to these people for five minutes,” Weinberger said, “and you knew their brains couldn’t be functioning the same.”

The MRI studies were seeming less valuable over time—all just pieces of one little corner of a much larger puzzle. Weinberger suspected that the only reason researchers loved them so much was that they had the tools to do them. “One of the things that has characterized psychiatry research forever is the old saying of, ‘Looking for the lost keys where the light is.’ Everything has been, ‘Well, we have this tool. We have a hammer, so we’re going to look for nails.’ And we would find things, because this is the nature of phenomenology—you find things.” Whether they were promising leads or red herrings, no one knew for sure.

In 1987, Weinberger published a theory that went on to change how practically every researcher thought of the illness. Until then, schizophrenia researchers had been fixated on post-adolescence as the moment schizophrenia appears. Brain scans all but confirmed that: The frontal lobe is the last part of the human brain to mature, at the end of adolescence, and MRI studies of the brains of many schizophrenia patients show problems with activity in the frontal lobe. But with his new theory, Weinberger suggested the problems in the brain quietly started much earlier in life. He reframed the conception of schizophrenia as a “developmental disorder,” in which abnormalities that patients possessed at birth, or even in utero, set off a chain of events that, in essence, sent their brains off the rails gradually, over time. All genes did, he said, was establish a blueprint for brain development and function. The rest happened later, in real time, with the help of the environment.

If Weinberger was right, the adolescent phase of brain maturation was simply the final chapter of the story. The brain is having difficulties throughout gestation and birth and childhood, only no one notices anything until the final phase of construction, when the brain is mature. Seen this way, schizophrenia’s onset seemed a little like a bowling ball that veers ever so slightly to the left or right the second it leaves the bowler’s hand and strikes the wood on the lane. For a few feet, the ball seems to be doing well, heading straight. Only closer to the pins does it become clear that the ball has been gradually going off course—so far off-center that it hits just one pin on the side, or falls into the gutter. Back in 1957, Conrad Waddington of the University of Edinburgh had proposed a similar metaphor for explaining the varied directions cells take as they develop and multiply. He envisioned a bunch of marbles rolling down a slope—an obstacle course with an elaborate system of lumps and grooves. Each marble ends up taking a different journey down the slope. That slope is
what he called the “epigenetic landscape”—part architecture, part chance.
^*

This idea made intuitive sense to Weinberger. For all of us, adolescence is a crucial period of housecleaning for brains that had been hard at work for more than a decade of extreme expansion and renovation. This demanding phase for the developing brain explains, for instance, why teenagers need more sleep, or why, after adolescence, it’s harder for most people to learn a language or recover from brain injuries. It may only stand to reason, then, that if one’s genes lay out merely a potential to develop schizophrenia, this would be when that potential is fulfilled. If nothing else, Weinberger’s developmental hypothesis explained why, for example, if one member of a pair of identical twins has schizophrenia, the chance that the twin also will have the condition is about 50 percent—but they each still have an equal chance of passing on the disease to the future generations. “
The risk is passed on,” Trinity College geneticist Kevin Mitchell has written, “regardless of whether the person actually developed the condition.”

Whether you get the disease or not, it seems, depends on what happens once the bowling ball hits the lane.

In the years to come, as genetics research grew in scope and ambition, the developmental hypothesis caught on with other scientists. To effectively fight this illness, this theory suggested, one might have to treat people before they seem sick. That, it seemed at the time, would call for isolating the genetic makeup of schizophrenia. Others were joining DeLisi and Freedman in the search for genetic mutations that, in their way, might tell the whole story at last.

*
Waddington’s 1957 “epigenetic landscape” model, while famous in its own right, shouldn’t be confused with the more recent use of the term
epigenetics,
or the idea of genes activated by the environment.

By the time the researchers from NIMH and Denver came to Hidden Valley Road, Donald had become wordless and vacant, his weight increasing, his movements stiff. He had more or less given up on finding a job or even walking around the neighborhood the way he used to. Except for mealtimes, he was a hermit. As painful as this was for Mimi to see, having Donald at home was also helpful to her, in both mundane and profound ways: He accompanied her as she went grocery shopping and did her chores, and he gave her a purpose.

Donald managed to stay out of Pueblo for seven years, instead paying regular visits to Pikes Peak for doses of Mellaril, an antipsychotic, and Lithobid, an extended-release lithium drug that targets mania. Every so often, he would try living in a boardinghouse, but would never last long. It was during one of those stays, around Christmastime of 1986, that he decompensated completely. He was admitted to Pueblo for the eighth time in January, refusing to answer any questions about his marital status (the failed marriage to Jean still loomed large, perhaps) and preaching from the Bible. In a new development, he also was talking about how certain Lithuanians were looking for him and trying to harm him.

Donald told the staff that he had stopped his medications because his watch stopped. Asked about his mother, he referred to her as “my father’s wife.” Mimi, he had decided, was not really his mother because he was swapped in the hospital—the offspring of an octopus. Pressed to explain his relationship with his family, Donald talked about arguing with his parents about getting a car. Asked if he had a driver’s license, he said he had a “Goldilocks and Three Bears” Colorado driver’s license.

In a few weeks, he was stabilized on new meds and returned home to Mimi and Don. In the early spring of 1990, after several years of living largely quietly in his room, Donald heard that Peter, after a few failed tries at living on his own, might be coming back to live on Hidden Valley Road. Donald thought that Peter was going to lay claim to his room and decided to take action. He placed phone calls to the Army and Air Force, asking them to station him in Greenland. He announced that he would rather eat in his room than the kitchen; then he went to the market and bought raw octopus and brought it back to his room, leaving it to rot. That was when Mimi noticed that Donald had been missing appointments for his shots of Haldol Decanoate. When he refused to take his twice daily dose of Kemadrin, his parents sent him back to Pueblo.

“My family and I just broke up over financial problems,” Donald announced upon his arrival at the state hospital. “I don’t want to live in the same house with Peter.”

JIM WAS LIVING
on his own, getting by on Prolixin. To those who caught glimpses of him, he seemed to be suffering from depression—defanged by years of neuroleptic drugs, obese and frail. His heart was weak, his chest aching with each breath, and yet his paranoia and delusions never completely went away. While Jim was all but an outcast now, his mother still would see him. After everything, he was her son, and she never could shut the door all the way on any of them. The girls never asked about him, and she would try not to bring him up in conversation.

Of all the sick brothers, Joe was the one Margaret and Lindsay found the most poignant in his suffering. Living with Matt for a while, and then in his own federally funded Section 8 apartment, Joe knew that he saw things that weren’t there. He went on about Chinese history, and how he had lived in China in a previous life, even as he recognized how strange that was. Once, he pointed at the sky with excitement and told Lindsay that the clouds were pink, and there was a Chinese emperor speaking to him from his past life. “I’m having a hallucination,” he said, still half believing it. “Don’t you see it?”

Joe was well enough to live alone in an apartment in Colorado Springs, but not quite well enough to fend for himself. When his health benefits couldn’t cover his expenses, he piled up too much credit card debt for him ever to climb out of. He filed for bankruptcy with Michael’s help. Michael told him he couldn’t get another credit card, but Joe got one anyway. He said he had to have a credit card with the Broncos logo on it. Once lean and handsome, he put on a tremendous amount of weight, and his obesity made every little problem worse. His eyesight failed; he developed borderline diabetes. Then came some of the same problems Jim had: chest pain, delirium, stress, panic. But Joe still had his sense of humor, or some of it. He talked with Michael about Transcendental Meditation all the time, hatching plans to try to go to India. He was, in some small ways, still himself. “He had that ability to kind of separate somehow,” Lindsay said. “He was the one that would be like, ‘I just want this to stop.’ ”

Joe never stopped wanting a connection to his family, sending religious-themed birthday cards and spending money he couldn’t spare on presents. Once, one of Michael’s grown daughters was complaining about needing money for books for college, and at Christmas an envelope showed up in her mailbox. Inside was five hundred dollars, with a note saying “for books.” Everyone agreed: No one other than Joe would have done such a thing.

ACCORDING TO MATT,
the former potter and second youngest of the four hockey brothers, his life took a wayward turn the day his mother decided to send him to a psychiatrist, after his teenage breakdown at the Garys’ house. “She took me to CU Medical Center in 1977,” he once said. “They put me on a psych ward, but that doesn’t make me mentally ill.”

Matt was getting more grizzled in middle age, heavier like Jim and Joe and Donald, but also hairier, with a bushy beard, and gruffer, with the imposing bearing of a Hells Angel. Matt’s best friends were Vietnam vets and homeless guys who, like him, subsisted on Social Security payments and Section 8 housing vouchers. Matt’s doctors learned that he sold his medications on the street more often than he took them.

He was in and out of Pueblo until 1986, when the doctors switched him over to clozapine. After practically his first dose, Matt noticed a difference. He started attending all his mental health appointments without fail. He told his family that he felt like he’d awoken from a nightmare. He no longer thought he was Paul McCartney. An atypical neuroleptic that worked slightly differently from typical neuroleptics like Thorazine, clozapine also had proven helpful to Donald and Joe, but had seemingly little effect on Peter. “When it works,” said Albert Singleton, the medical director at Pueblo, “the difference between clozapine and other drugs is like the difference between Bayer aspirin and Oxycontin.”

As long as he had a car to drive, Matt filled his day running errands for his friends. He felt useful this way, and he was. He volunteered at a food kitchen for homeless veterans for years; many of the people he served were his friends. The VA sent him a letter of thanks once for his service. “His little bit of responsibility to other people keeps him going,” his brother Michael once observed. “I think that’s true for all of us.”

Even on a better drug, Matt could still descend into long jags of self-pity, airing grievances against everyone in the family and the government. At his monthly sessions at Pikes Peak Mental Health Center in Colorado Springs, he did his best to convince the doctors that he did not need the medication anymore. Every month, he was disappointed. But unlike Peter, who would just stop taking his medicine, Matt’s chief reaction was to complain—convinced the entire world was conspiring against him, and that his family had forsaken him. Only when he was at his angriest would his grip on reality loosen a little again. That was when he would became convinced that his medical treatment was not only not necessary, but that it was the cause of any number of world events.

“The more they drug me, the more people will end up dead,” Matt once said. “If you ever watch the news lately, like, four hundred eighty people died in four different plane wrecks. Eight thousand people died in an earthquake in the Himalayas; a hundred fifty men in Nigeria got shot down; twenty-two people killed in a church; twenty-two killed in a plane wreck. Quit drugging me, or these things will keep happening.”

“I AM THE
prophet you have heard so much about!”

In November 1985, Peter Galvin—twenty-five and rail-thin, his hockey bulk a thing of the past—was noticed praying in the middle of a street in downtown Colorado Springs. A few days later, the police ran across him, this time upset and hostile. When they told him he most likely was heading to the state hospital, Peter lost his temper, threatening to fight anyone who tried to take him. When one cop approached him, Peter said he’d rip out his carotid artery. Then he attacked.

This would be Peter’s eighth admission to Pueblo. He arrived angry, and at mealtime he refused to eat. During observation, Peter’s contradictions became well known to the staff. “It is interesting to watch him function,” one psychiatrist wrote. “He says that he will take his medication, but, when confronted that he has recently refused, he says, ‘You’re right, I have,’ as though this inconsistency means nothing to him.”

The doctors at Pueblo decided to send Peter to court to face the assault charge as soon as he stabilized. Until then, he was placed in CARES House, the supervised residence that years earlier had given him the boot. Peter tried to escape, climbing out of the same window four times in four days and coming home to Hidden Valley Road. Mimi drove him back each time, only to see him walking back through her door the next day.

After years of questioning his diagnosis, his doctors had finally started prescribing lithium, on the theory that his symptoms lined up more closely with bipolar disorder. But lithium only works if you take it. Mimi and Don were already struggling to referee Peter’s clashes with Donald. Now, Peter also refused to take both lithium and Prolixin, and, according to a communication from Mimi included in one medical report, was “not eating or drinking, staying in bed, not talking, staring at family members, being totally unresponsive with occasional explosive outbursts.” Her conclusion: “The mother feels that Peter is trying to starve himself and has a death wish….In addition, around Halloween he became explosive to the point of violent with an older brother.” This would have been Donald, the only other brother still living at home. “The family feels the threat of this is imminent, every waking minute, and the mother is ‘deathly afraid of the results.’ ”

The doctors were proceeding on the assumption—or, perhaps, a wish—that somewhere there might exist the perfect combination of medicines to help bring Peter back to some manageable baseline. In one meeting at Pueblo, Mimi said she thought that Peter did best on a combination of lithium and Prolixin, but Don said he was concerned about a tremor Peter had seemed to develop while on Prolixin. The doctors suggested trying Peter on another bipolar drug called Tegretol in addition to the lithium. Peter agreed, though to the doctors he still seemed irritable and even paranoid.

Peter told the staff psychiatrist that he wanted to write a book about his life. He said he was going to Tibet to study the martial arts, that he had been crucified and resurrected, and that he was covered with the blood of Christ. At times, he burst into song. “I’m cured. I’m well,” he said in May 1986, back at Pueblo for the ninth time. “The Priest has anointed me and healed my whole body….I believe that when you are anointed with oil, that is a cause for repentance and you are healed
without
medication.”

Two months later, in July, he entered the room for an interview carrying a Bible, bragging about having converted several of his fellow patients to Christianity the previous evening. But he also said that he was aware that he had a disease, and that he knew the lithium was meant to keep him from getting “too hyper, from working twenty-four hours per day, like I was doing with three different jobs.” Without the lithium, he said, “my blood pumps really fast.”

It was at about this time that Peter sat for an assessment that seemed to shake loose something new about him, something he hadn’t discussed before. He started out irreverent, as usual. Asked about his marital status, he said, “I divorced the United States.” Asked if he had any special vocational training, he said, “I’m in the Federation,” a nod to his father’s old organization. Asked if he had any allergies, he cited both lithium and Prolixin.

Then came some boilerplate mental health questions.

Have you been hearing voices?

“Voices from God. He tells me to obey the commandments and love one another.”

Have you been experiencing suicidal ideation?

“Yeah, ’cause if I get hold of a knife or a spoon, I’ll swallow it. I took a whole bottle of lithium once.”

Have you ever hurt anyone?

“Yeah, all kinds of people.”

Have you ever been involved in physical or sexual abuse?

“Yes,” Peter said. “I was abused as a child by my brother. I won’t say which one.”