Hidden Valley Road by Robert Kolker

Hidden Valley Road [2020] came to my attention through my wife’s book club. Margaret was engrossed by this non-fiction narrative of a large Catholic family beset with a cruel disease, side-by-side with actual medical hypotheses and studies, and as I am a psychotherapist, she would share her layperson's observations. So of course I purchased my own copy, and I have to say that rarely have I seen the suffering of mental illness in real time coupled with the agonizing and pressured research of scientists to find the cause of a specific and dangerous syndrome. I wish I could say this narrative was unique, but it is not…because mental illness impacts our church communities, including our priests, as this story reveals. The author is the award-winning New York Times’ Robert Kolker.
 
THE FAMILY NARRATIVE: First off, I need to assure you that all the family narrative is based on the best available evidence, including self-reporting and releasing of family medical records. The family names are pseudonyms to protect privacy.
 
The story begins with the marriage of Don and Mimi Galvin. Don was a strict Catholic from birth; Mimi converted to Catholicism at some point in the marriage. They were married during World War II. Don’s exact position with his military superiors is never exactly defined in the book. Don is inclined to exaggerate his importance at times to his family, referring to himself as an intimate advisor to President Eisenhauer, for example. But he and Mimi were frequently invited to military high society functions. In their gravy years with the military the Galvins made close friends with a millionaire couple who play a continuing role in the Galvin story, though different Galvin children remember them as positive and negative influences. Also, a factor, Don Galvin’s income was considerably lower than that of his associates.
 
The author notes that Don Galvin’s Catholicism was lived out in the couple’s having twelve children between 1945 and 1965, though Kolker, an author with the eye of a therapist, comes to believe that the later children may have been conceived for Mimi’s needs, even more than Don’s. The first ten were boys, the last two, girls. As their firstborn son, Donald, passed into adolescence, he began to manifest an angry, physical, aggressive behavior, particularly toward the next oldest sibling, who responded in kind. As the years progressed, six of the boys demonstrated this angry, aggressive behavior; four did not.
 
Donald was the first—but certainly not the last--in his family to encounter the world of psychiatric treatment, and several self-destructive episodes led to the first entry in his chart, “possible schizophrenic reaction.” Schizophrenia. [p. 63]
 
A CROSS NO ONE SHOULD BEAR: Kolker does an excellent interplay in whisking the reader between the growing drama of six sons presenting schizophrenic symptoms, on the one hand, and the development of treatment modalities over the many years of the family affliction. The Galvins’ children grew up during a time of considerable disagreement and animosity in the mental health community. On the one hand were the “talking cure” practitioners, descendants of Freudian psychoanalysis, who believed that all psychotic behavior was a product of inner conflicts which could be resolved by talking out and identifying the heart of the conflict.
 
But on the other side were practitioners and researchers who believed that the disease was organic, most likely in one or more regions of the brain, and that the best treatments were medical—hospitalization, medication, and electroshock, if necessary. The six Galvin boys ran the gamut of such treatments and institutionalizations throughout their lives, but they [and the rest of their family] became the object of intense medical research across the country. Multiple cases of schizophrenia in a family are highly unusual; the odds against six identified subjects in a nuclear family are in the trillions. In the quest to study the genesis of the disease, all the members of the family were studied and tested to detect a genetic marker peculiar to or absent from the six afflicted boys, and the other way around, a process that went on for decades.
 
The symptoms of schizophrenia, defined here by the Mayo Clinic, explain how hard it is for a patient to exist in a “normal setting” such as a home or apartment. This disease falls into the category of “personality disorder,” or disorder of thought, which one of my professors described as bad wiring in the brain. Schizophrenia and other personality disorders are worlds apart, treatment wise, from ‘disorders of mood” such as depression, anxiety, panic attacks, etc. Therapy assists depressed patients because the patients’ thought processes, although often mistaken, are intact enough to implement changes of circumstances and behavior with traditional therapy and modest medication. Medications for mood disorders are far more benign, although the risk of suicide increases with depressed mood. There is more known to science about mood disorder, though not enough. I myself have taken antidepressants since 1990—but it took seven different meds and ten years to find the right one. My drug, nefazodone, is an SNRI or “selective norepinephrine reception inhibitor” in the brain, a cousin to the SSRI Prozac/fluoxetine family, which inhibits serotonin reuptake. However, when I go for my refills, the pharmacy instructions always begin with “the full operation of this medication is still not entirely understood.” A fair statement for much of what we do in psychiatry and mental health practice.
 
LIFE IN THE GALVIN HOUSEHOLD. Mimi strove to keep her family together. In practice this meant providing room and board for her six afflicted sons as they spent their adulthood cycling through hospitalizations, prisons, flop-house arrangements, and extended periods of wandering the countryside. Compliance with prescribed medications was hard to enforce. [See the side effects of thorazine.]Money was tight, particularly after Don’s retirement from the military. Often the family could not afford topflight mental health facilities and was forced to institutionalize sons in lower budget state facilities for months at a time. During their time at home at Hidden Valley Road, Mimi did her best to police some kind of order—regular meals, hygiene, etc.—but at best the atmosphere was chaotic, and at times dangerous.
 
Personality disorders are marked by inability to feel for others. And while schizophrenia creates numerous impairments, sexual drive is often not impaired. As the Galvin family grew up, with multiple unhealthy men coming into the prime of adulthood and sexual drive, the situation of the two youngest girls [offspring #11 and #12] just coming into puberty created a seriously unsafe environment. At this juncture Mimi accepted an offer from an affluent couple in her circle to allow the oldest girl to live with this other family for some years, in a high society environment with the best schools. This was a cruel blow to the younger sister who for years afterward wondered why she had been left behind. I myself puzzled over the intentions of Mimi and the generous couple; if the latter took the older girl to save her, so to speak, why leave the younger and more vulnerable one behind?
 
Don would eventually die of cancer, and the deaths of most of the afflicted sons would open a new psychological episode for the family: processing the questions and angers of the six who were not physically afflicted by schizophrenia. In the final chapters of this work, Kolker interviews the two youngest daughters at some length to explore the lot of the survivors, so to speak. Three of the four unafflicted brothers maintained relationships with Mimi and the homestead, though they wisely kept their children [and themselves] at a safe distance. The daughters likewise married, though they were wary of reassurances of researchers that their offspring were not at higher risk for inheriting schizophrenia. In fact, an autopsy of Don’s brain found no abnormalities, a point that Mimi did not acknowledge to herself. As Kolker observes, “Mimi knew what she knew.”
 
In reading the family postmortem, so to speak, what appears to have troubled Mimi’s surviving children was their mother’s perfection and autocratic ways, specifically her determination to care for her sick boys above everything else. Mimi never totally accepted a medical cause for her sons’ illnesses—in her older years she blamed her husband’s family despite the absence of medical proof available at the time. But in her declining years in the 1990’s she learned of a stunning betrayal of her trust years earlier that, in her mind but probably wrongly, became the lynchpin of her interpretation of the family’s troubles in her final reckonings before her death.
 
The two sisters, Margaret and Mary/Lindsay, “had issues” between them—as in why one got cut loose and the other left behind in the mayhem. However, they came to realize that they would be the final chroniclers of this long and tragic epic, as well as the glue that held the surviving family together, and both became valuable sources as Kolker rounds out his narrative.
 
LOOKING AT THIS NARRATIVE FROM THE VANTAGE POINT OF CATHOLIC LIFE: The United States Conference of Catholic Bishops lists the “corporal works of mercy,” and it says this about the sick: “Offer to assist caregivers of chronically sick family members on a one-time or periodic basis. Give caregivers time off from their caregiving responsibilities so they can rest, complete personal chores, or enjoy a relaxing break.” This is excellent counsel, to be sure, although some forms of illness present with dangerous symptoms—infectious conditions, for example, or schizophrenic chaos. If a parish is considering a ministry to the sick and to caregivers, it would be wise to seek professional input in staff planning and recruiting volunteers as well as periodic continuing education for those working with the sick.
 
It is a common feature of personality disordered individuals to deny they are ill or different in any way…and hence, can be highly resistant to prescribed drugs, or even suggestions meant to help. I learned this the hard way in the confessional. I had a penitent who was caught up in a situation which caused serious anxiety and guilt. After some weeks I became confident that the penitent might be suffering from obsessive compulsive disorder as the root cause. So, I said, “You know, the next time you see your doc, ask if a tricyclic antidepressant might help you regain control.” The penitent roared back: “I don’t come in here for headshrinker bull----. I come for absolution.” So much for my good intentions. But it is true that some forms of disease require unusual and extraordinary methods of comforting access. And to paraphrase Jesus, some issues are addressed only by prayer and fasting.
 
The same is true with family members of the sick. Mimi, for example, had her way of caring for family business. An astute parish minister visiting her house might take considerable issue with the makeup and management of the home, but still need to find the prayer, the interaction, and the practical assistance to lift the spiritual and possibly even the physical burden of the caregiver for a time. If you are an extraordinary minister of the Eucharist, you should probably discuss the condition of your patient[s] and their settings with your pastor in reference to their symptoms and behaviors as well as the possibility to administer the sacrament in a meaningful and devout fashion. [When I ran this sentence past my wife, who had read the book before me, she said “you mean, a minister might feel awkward giving communion with adult Donald walking stark naked through the house,” as was his wont.]
 
The story detailed in Hidden Valley Road covers nearly a half century. Although the author is able to identify some progress of science over that time including the extraordinary sacrifices of individual scientists, a definition of schizophrenia, let alone a cure, remains far into the future. The treatment and containment of patients today is basically the same as that employed in the care of the Garvin boys. We have a long way to go to ameliorate, let alone cure, many diseases that cripple individuals and disrupt families and marriages.
 
While Catholic teachings in recent years such as Fratelli Tutti have exhorted us to become more engaged in thinking and acting as a community in the care of the planet, health care in our country and the world is a demanding issue crying for help. It is also an issue that involves individuals of all faiths and cultures. Catholic Americans can be rightly proud of our history of the care of the sick. Historians of both the Confederate and Union Armies of the Civil War highlight the extraordinary interventions of Catholic sisters in treating wounded soldiers across the entire landscape of that war.
 
Today, health care is a business, and everyone is a player—and a present or potential client as well. Each of us is also a taxpayer, hopefully an informed one. The past years and months have not been kind to honest medicine. Massive federal and state cuts have impacted the health services currently available, Medicare and Medicaid, among others. Monies for research are harder to come by. Each year during “Medicare reset time” either I or the people close to me relate how our long-time providers are no longer “in-network” and our copays, naturally, are increased. Kolker is eminently fair in his narrative, but he does observe that Big Pharma has not been motivated to aggressively pursue new formularies for schizophrenic disorder.
 
In our sermon last night [Saturday, September 27], our celebrant developed a magnificent theme about Lazarus the poor man. Lazarus was not just poor; he was also “covered with sores,” as St. Luke describes him. “The dogs came and licked his sores.” Lazarus was shut out from sustenance and health care by the gate at the rich man’s residence. And, more chilling, the day is coming when the circumstances will be reversed, and Lazarus will recline in health and rest in Abraham’s bosom while the rich man was consumed in the fires of judgment. That day is coming for us, too.
 
Let it be said that we opened our mouths and cried for a national compassion and a just system of healing. God expects that none of his children will be locked out of humanity and left to be licked by dogs.