Introduction
Robert Kolker's "Hidden Valley Road" tells the extraordinary story of the Galvin family - a family that would become central to groundbreaking research into the genetics of schizophrenia. This gripping narrative explores how a seemingly picture-perfect American family of the mid-20th century grappled with unimaginable challenges as six of their twelve children developed schizophrenia.
The book takes us on a journey through decades of the Galvin family's experiences, from the hopeful beginnings of Mimi and Don Galvin's marriage to the heartbreaking realities they faced as their children's mental health deteriorated. Along the way, Kolker weaves in the history of schizophrenia research, the evolution of treatments, and the scientific breakthroughs that the Galvin family's genetic material would eventually help facilitate.
"Hidden Valley Road" is not just a tale of medical mystery and scientific discovery. It's a deeply human story about family, resilience, and the complex emotions that arise when confronting mental illness. Through the Galvins' experiences, we gain insight into the profound impact of schizophrenia on individuals and families, as well as the broader societal attitudes towards mental health over the past several decades.
The Galvin Family: A Promising Beginning
Mimi and Don Galvin's story begins like many American love stories of the mid-20th century. They were young, ambitious, and deeply in love when they married just before Don left to fight in World War II. Don had dreams of a career in the State Department, whispering in the ears of future presidents. Mimi envisioned a life of influence and importance.
However, life had different plans for the couple. After the war, Don struggled to transition from military life to his desired political science career. Eventually, he joined the newly formed Air Force as a high-ranking officer, a decision that led the family to Colorado Springs, where the Air Force headquarters were being built.
Initially reluctant about the move, Mimi soon found Colorado to be a beautiful, wide-open space perfect for raising children. And raise children they did - twelve of them, to be exact. The first ten were boys, followed by two girls, much to Mimi's delight.
The Galvins seemed to embody the American dream. Don was successful in his military career, and Mimi was a devoted mother to their large brood. They were active in their community and their church, presenting an image of the ideal American family. However, beneath this perfect facade, trouble was brewing.
The First Signs of Illness
In 1963, the Galvins moved into a modern, split-level house on Hidden Valley Road in the Woodmen Valley area, just outside Colorado Springs. It was here that the first clear signs of illness began to manifest in two of the Galvin children.
Donald, the oldest son, had always been the all-star athlete, seemingly intent on making his father proud. But during his sophomore year at Colorado State University, things began to unravel. Between September 1964 and the fall of 1965, Donald visited the campus health center four times for increasingly concerning reasons.
The final visit came after Donald had jumped into a bonfire. This incident led to his first psychiatric evaluation, though he was initially allowed to resume his classes. However, Donald's behavior continued to deteriorate. He dove headfirst into a relationship with a classmate named Marilee, and when it fell apart, Donald began to spiral. He spent hours on the phone, missed rent payments, and moved into a vacant cellar near campus.
It was during this time that Donald revealed the full extent of what had been going on with him. He admitted to putting a cord around his neck, turning on the gas, and even pricing caskets at a funeral home. Most disturbingly, he had slowly killed a cat that had been living with him. Donald couldn't explain why he was doing these things, and they seemed to frighten and confuse him as much as anyone else.
In 1966, Donald received his first diagnosis of "possible schizophrenic reaction." When he was brought home, the illness was readily apparent. He muttered about the CIA and his ex-girlfriend before shouting, "Get down! They're shooting at us!"
Meanwhile, Jim, the second-oldest Galvin son, was also showing signs of trouble. He had always been a rebel, getting expelled from school for sneaking into an Air Force jet and messing around in the cockpit. But his behavior was escalating. After marrying Kathy in 1968 and quickly having a son, Jim's violent tendencies became more pronounced. He would stand in front of the stove all night, turning the burners off and on, and his violent outbursts were often self-inflicted, like banging his head against a wall. Soon, this violence was directed towards Kathy.
The Stigma of Mental Illness in the 1960s
When Donald and Jim began showing signs of mental illness, the prevailing theory about schizophrenia was that it was caused by the "schizophrenogenic mother." This poorly defined concept suggested that mothers who were either overly affectionate or completely lacking in affection could cause "severe warp and rejection" in a child's development, leading to schizophrenia later in life.
Mimi and Don were aware of this theory and its potential to bring scandal and shame to their family if they committed Donald to a psychiatric facility. But beyond the fear of social stigma, they had other reasons to be hesitant about institutionalizing their sons.
In 1959, a book called "The Caretakers" had exposed the grim realities of American mental health institutions. It revealed that patients were subjected to shock treatments (some receiving as many as two hundred), put in solitary confinement, restrained for days at a time, and given powerful tranquilizers and drugs like Thorazine, which one doctor described as a "chemical lobotomy."
The facility described in "The Caretakers" was the Colorado State Hospital in Pueblo, just an hour's drive from the Galvins' home on Hidden Valley Road. Understandably, Mimi and Don wanted to protect their sons from such a fate. They tried to support Donald as best they could at home, and for a while, it seemed like things were improving. He continued his classes and visits to the campus psychiatrist and even started dating a new girl, Jean, whom he married in 1967.
However, the family's attempts to manage the situation at home would soon prove insufficient as more of their children began to show signs of illness.
The Escalation of Violence and Tragedy
As the 1970s began, both Donald and Jim's marriages were in trouble. Donald's relationship with Jean had become volatile, culminating in a frightening incident where Donald followed Jean after an argument, talking about wanting to kill her. When Jean announced her intention to leave and move to Oregon, Donald attempted to dose both himself and Jean with lethal cyanide tablets. Fortunately, Jean escaped and called the police. Donald was booked for an alleged suicide and homicide attempt and was committed to the hospital in Pueblo.
Donald's return home after a short stay at Pueblo was not good news for his youngest sisters, Margaret and Mary. They often came home from school to find Donald behaving strangely, such as moving all the furniture outside or lying naked in the living room reciting Bible verses.
The sisters sought refuge at their brother Jim's home, but this proved to be no safe haven. Jim, often drunk, would molest Margaret at night. When Margaret stopped visiting, Jim turned his attention to Mary. The sisters, confused and traumatized, didn't confront their mother about the abuse for years.
In 1973, tragedy struck the family when Brian, the fourth oldest Galvin son, was found dead alongside his girlfriend, Noni. The police determined that Noni had been shot, and Brian's wound was self-inflicted. Unknown to most of the family at the time, Brian had been prescribed an antipsychotic called Navene shortly before his death, indicating that he too had been struggling with mental health issues.
The Spread of Illness and a Lifeline
As the 1970s progressed, more of the Galvin children began to show signs of mental illness. Peter, one of the youngest and part of the "hockey brothers" group, began speaking gibberish to other students and couldn't stop. He was hospitalized and diagnosed with schizophrenia.
When Joe, another of the hockey brothers, came to visit Peter in the hospital, he confided in Peter's therapist that he was experiencing similar symptoms. The illness seemed to be spreading through the family at an alarming rate.
In the midst of this growing crisis, a lifeline was thrown to one of the Galvin children. In December 1975, a family friend named Nancy Gary offered to take in Margaret, the older of the two Galvin girls. This offer came as a relief to Mimi, who had rarely spoken to anyone outside the family about what was happening to her children.
For Mary, the youngest Galvin, watching her sister Margaret being driven off to live with the Garys in Denver was a heartbreaking experience. She felt alone and helpless, wondering why she couldn't leave too and if something was wrong with her.
By 1982, six of the Galvin siblings had been diagnosed with schizophrenia: Donald, Jim, Brian (posthumously), Matt, Peter, and Joe. The family was in crisis, with multiple brothers often hospitalized at the same time in Pueblo, where the best treatments available were drugs like Thorazine and Clozapine - medications with severe side effects including tremors, seizures, heart arrhythmia, weight gain, and restlessness.
The Galvins as Research Subjects
As the medical community's understanding of schizophrenia evolved through the 1970s and 1980s, families like the Galvins became invaluable to researchers. The idea that schizophrenia stemmed from bad parenting was giving way to theories about its biological nature.
In 1979, Richard Wyatt, a neurophysicist with the National Institute of Mental Health, published a study showing that people with schizophrenia had a larger amount of cerebrospinal fluid in certain brain regions. This discovery suggested a physical difference in the brains of those with schizophrenia, moving the conversation firmly into the realm of biology.
One of the researchers who worked on that study was Lynn DeLisi, a psychiatrist who had dedicated her career to studying the biology of schizophrenia. DeLisi recognized that studying a family like the Galvins would be one of the best ways to isolate and identify genetic markers for the illness.
The Galvin family was, in many ways, the perfect subject for this kind of research. With six siblings diagnosed with schizophrenia and six without, their genetic material offered a unique opportunity to compare DNA and spot differences between those who were ill and those who weren't.
In 1984, DeLisi began collecting genetic data from families with schizophrenia. When she heard about the Galvins, she knew she had to visit them herself. For Mimi Galvin, DeLisi's arrival was a long-awaited moment. Since Donald's initial diagnosis, Mimi had been involved in the caretaking of each of her ill sons, making it relatively easy to obtain the necessary blood samples for DeLisi's research.
DeLisi's work with the Galvin family DNA quickly yielded results. In February 1986, just months after visiting the Galvins, her data gathered from one thousand families confirmed Richard Wyatt's research about enlarged ventricles in the brains of people with schizophrenia. She also shared the samples taken from the Galvins with the Coriell Institute for Medical Research, making the family's genetic material available to other researchers.
While DeLisi's work was groundbreaking, a major breakthrough remained elusive. However, her research, along with the Galvin family's genetic material, laid the groundwork for future discoveries.
Advances in Understanding Schizophrenia
As researchers continued to study the Galvins and other families affected by schizophrenia, new theories about the nature of the illness emerged. In 1987, Dr. Daniel Weinberger of the National Institute for Mental Health published a paper suggesting that schizophrenia was a gradual "developmental disorder." According to this theory, the genetic abnormalities that contribute to the illness are present from birth, but symptoms only become apparent when the brain is fully mature.
This theory helped explain why schizophrenia typically manifests in late adolescence or early adulthood. It suggested that the illness develops slowly over time, like a bowling ball gradually veering off course as it rolls down the lane.
Meanwhile, Robert Freedman, a researcher at the University of Colorado Medical Center, was working on another aspect of schizophrenia: sensory gating. This refers to how people process sensory input. Freedman discovered that people with schizophrenia experience all sensations as if they're experiencing them for the first time, leading to a constant state of overstimulation.
Freedman's work led him to the ɑ7 (alpha-7) receptor, which is responsible for communication in the brain. He found that people with schizophrenia have about half the number of ɑ7 receptors as the average person. He traced this deficiency to a gene called CHRNA7 and a lack of the compound acetylcholine, which triggers the creation of these receptors.
These discoveries were significant steps forward in understanding the biological basis of schizophrenia. However, translating this knowledge into effective treatments proved challenging. Freedman found that nicotine could temporarily boost acetylcholine production, improving focus and calm in his test subjects. He even identified a drug, DMXBA, that worked even better than nicotine at targeting acetylcholine and the ɑ7 receptors.
Unfortunately, practical considerations prevented DMXBA from being developed into a treatment. The patent on the drug was expiring, making it unattractive to pharmaceutical companies. Additionally, it needed to be taken multiple times a day, which was seen as impractical for patients with schizophrenia.
Breakthroughs and Ongoing Research
Despite the setbacks, research into the genetic basis of schizophrenia continued. In 2009, Lynn DeLisi's work received new life when Steve McDonough of the biotech company Amgen reached out to her about continuing her research.
Using new sequencing technology and the Galvin family's DNA, DeLisi and McDonough made a significant discovery: a shared mutation in the SHANK2 gene among the Galvin brothers with schizophrenia. This gene is responsible for encoding proteins that facilitate communication between brain synapses and help neurons respond quickly.
When their study was published in 2016, it considered that all three SHANK genes (SHANK1, SHANK2, and SHANK3) could be connected to a spectrum of mental illnesses, including bipolar disorder and autism. This aligned with the varying symptoms and diagnoses among the Galvin brothers, supporting the idea that schizophrenia might not be a single disease but rather a collection of related neurodevelopmental disorders.
Around the same time, Dr. Freedman made another important discovery. He found that choline, a nutrient available as a dietary supplement, could also stimulate the CHRNA7 gene to produce ɑ7 receptors. This finding led to efforts to include choline in prenatal vitamins.
A study conducted in collaboration with the Food and Drug Administration showed promising results: children who received choline supplements in utero showed fewer signs of sensory gating issues, fewer attention problems, and less social withdrawal compared to the control group. While it's too early to call this a major breakthrough, it represents a positive step forward in potential prevention strategies.
The Galvin Family Legacy
As research progressed, the Galvin family continued to grapple with the long-term impacts of their experiences. Some family members, like Lindsay (formerly Mary), stepped up to become caregivers for their ill siblings. Others, like Margaret, distanced themselves from the family.
In 2016, DeLisi paid another visit to the Galvin family. By this time, Don had passed away in 2003, never fully recovering from his stroke. Mimi lived until 2017, maintaining her positive outlook until the end. Lindsay had become the central organizer of the family, even becoming the state-designated caretaker for her brother Peter.
The Galvin family's genetic material continues to be used in ongoing research efforts. In September 2016, Lindsay organized another round of blood drawings from her siblings, remaining hopeful about the potential for new discoveries.
However, the reality is that progress in treating schizophrenia has been slow. Hospitals still rely heavily on powerful drugs with dangerous side effects. The development and testing of new antipsychotic medications remain expensive and risky endeavors that many companies are reluctant to undertake.
Yet, there is a glimmer of hope in the next generation. In 2017, Lindsay's daughter Kate began an internship in Dr. Freedman's laboratory as part of her pre-med studies. At just 18 years old, Kate found herself surrounded by blood and tissue samples, some of which came from her own family. Her grandfather's brain was likely somewhere in the lab, and Kate wondered if she might one day have the opportunity to study it herself.
This full-circle moment represents both the ongoing nature of schizophrenia research and the enduring impact of the Galvin family's contribution to science. Their story, while marked by immense struggle and tragedy, has played a crucial role in advancing our understanding of schizophrenia and may yet lead to breakthroughs that could help countless others affected by this challenging illness.
Reflections on the Galvin Family's Journey
The story of the Galvin family, as told in "Hidden Valley Road," is a testament to the complex interplay between genetics, environment, and chance in shaping human lives. It's a narrative that spans decades, encompassing not just the personal struggles of one family, but also the evolution of our understanding and treatment of mental illness.
The Galvins' journey began with the American dream - a young couple full of ambition and love, ready to build a large, successful family. But as their children grew, that dream morphed into a nightmare of confusion, fear, and heartbreak. The onset of schizophrenia in six of their twelve children transformed their lives in ways they could never have imagined.
Through their story, we see the devastating impact of mental illness not just on those directly affected, but on entire families. We witness the strain on marriages, the trauma inflicted on siblings, and the lifelong consequences for those who grew up in the shadow of severe mental illness.
Yet, amidst the tragedy, there are also stories of resilience and hope. We see family members like Lindsay stepping up to care for their ill siblings, refusing to abandon them despite the challenges. We see the unwavering love of parents who never gave up on their children, even when faced with seemingly insurmountable obstacles.
The Galvin family's willingness to participate in scientific research, to open their lives and their DNA to scrutiny, is perhaps their greatest legacy. Their contribution to the field of schizophrenia research has been invaluable, providing scientists with crucial data that has advanced our understanding of the genetic components of the illness.
Through the Galvins' story, we also see the evolution of societal attitudes towards mental illness. From the misguided theories of "schizophrenogenic mothers" to the recognition of schizophrenia as a complex biological disorder, their journey mirrors the broader shifts in how we perceive and treat mental illness.
The book also highlights the ongoing challenges in mental health treatment. Despite decades of research and the dedication of countless scientists, effective treatments for schizophrenia remain elusive. The medications available often come with severe side effects, and the development of new drugs is a slow and costly process.
Yet, there are reasons for hope. The identification of specific genes linked to schizophrenia, the potential preventative effects of prenatal choline supplementation, and the growing recognition of schizophrenia as a spectrum of related disorders rather than a single disease all point towards a future where more targeted and effective treatments may be possible.
Conclusion
"Hidden Valley Road" is more than just a medical mystery or a family saga. It's a profound exploration of the human capacity for both suffering and resilience. It challenges us to consider how we, as a society, treat those with mental illness and their families. It raises important questions about the intersection of scientific research and personal lives, and about the ethical considerations involved in genetic studies.
The Galvin family's story reminds us of the importance of compassion, understanding, and continued research in the face of devastating illnesses. It underscores the need for better support systems for families dealing with mental illness, and for continued efforts to destigmatize these conditions.
As we look to the future, the legacy of the Galvin family offers both a cautionary tale and a beacon of hope. Their experiences highlight the urgent need for better treatments and support for those with schizophrenia and other severe mental illnesses. At the same time, their contribution to scientific research offers hope that such advancements may indeed be possible.
In the end, "Hidden Valley Road" is a testament to the complexity of the human mind and the human experience. It's a reminder that behind every diagnosis, every statistic, and every research study are real people with real lives, hopes, and struggles. The Galvin family's willingness to share their story has not only contributed to scientific understanding but has also helped to humanize a often misunderstood and stigmatized condition.
As we continue to grapple with the challenges of mental illness in our society, the story of the Galvins serves as both a sobering reminder of how far we still have to go, and an inspiring example of the progress that can be made when science and human experience come together in the pursuit of understanding and healing.