Hidden Valley Road by Robert Kolker
Why this book?
To this day, I think schizophrenia is often still misunderstood and so much is still unknown about the condition. So when Hidden Valley Road was featured in Oprah's book club, I was immediately hooked. Hidden Valley Road, written by journalist and New York Times bestselling author Robert Kolker, tells the deeply honest story of schizophrenia. The story follows the Galvin family, a mid-century family with twelve children, as they navigate through not one— but, six schizophrenia diagnoses. I think what made this story so captivating is the disbelief that you'll have turning each page as more pain and tragedy unfold in the Galvin family. But Kolker tells this story brilliantly with an admirable lack of sensationalism. Parallel to the Galvin's struggles, he also shed light on the tireless psychiatric research that has been dedicated to defining schizophrenia and establishing the treatments. Hidden Valley Road is a must-read for anyone who wants to understand how far we've come in understanding and treating schizophrenia — and how far we still need to go.
What you'll get?
One of the most important themes in the book was how far people will go to maintain their picture-perfect family image to the world. This theme was particularly presented through Mimi's story (the mother in the Galvin family). I would compare reading this book to peeling an onion — as you read each chapter you peel a new layer, and you'll slowly uncover more secrets and complexity to the Galvin family. You'll witness firsthand the extent to which Schizophrenia could affect a family.
The second thing you'll get from this book is the well-researched scientific progress of schizophrenia; starting from the false conception that bad-mothering was the main cause of schizophrenia, evolving to the over-reliance on antipsychotic treatments, and finally to the possibility of breakthroughs with therapy treatments.
Lastly, you'll find hope through the Galvin sister's (Lindsay and Margaret) story. I find it reassuring that new generations are more open-minded to approach schizophrenia in a different light; instead of treating schizophrenic patients like dysfunctional members of society, drugged up and locked away in institutions... more people are advocating for their rights, for more compassionate treatments and therapies, and early preventative measures since childhood. While we are still a long way from fully tackling schizophrenia, we are surely making progress.
Click here to purchase the book Hidden Valley Road!
Outline
You know that feeling — when you just finished a good movie, say Inception, and you're filled with so many questions. So you quickly grab your phone, to go on a rabbit hole search dive for anything to curb your curiosity. My book notes are intended to supplement that feeling. Use this book note as a resource that supports you as you read Hidden Valley Road, as an inspiration if you need to write a thematic analysis for a school paper, or simply if you want to refresh your memory on the main stories. Either way, I hope my book notes could help you in some way.
1. The Perfect Family
Don and Mimi Galvin
Why so many children?
Falconry: Metaphor for Don and Mimi's relationship
2. The Affected Children
Full family picture of Mimi Don, and their 12 children (Lindsay their youngest daughter is carried by Mimi). (Source: Wall Street Journal)
Donald
Jim
Brian
Peter
Joe and Matt
3. The Unaffected Children
John
Richard
Michael
Mark
Margaret
Lindsay
4. History of Schizophrenia: Scientific Side
Mother blaming
Thorazine
Therapy — Hope
1. The Perfect Family
Young Mimi (left) and Don (right). (Source: Hidden Valley Road book)
The parents in the Galvin Family, Don and Mimi Galvin, epitomized the postwar American dream. Young Mimi was the granddaughter of Texas aristocracy; she and her mother once traveled on the same train as Charlie Chaplin. Charming Don had a decorated resume; he served in the world war (first on the USS Adams and then on the USS Juneau), received a bachelor's degree in Georgetown, and then joined the Air force in its early days. Both Mimi and Don moved to Hidden Valley Road in Colorado (the main setting of the book), and over the course of 20 years, Mimi and Don welcomed 12 children together — 10 boys followed by 2 girls. A full house.
Why so many children?
Galvin family picture, with Mimi and Don and their 12 children. This picture was taken after Don earned his Phd. (source: HVR book)
When Don was assigned to Colorado by the Air Force, Mimi — who had a glamorous upbringing— experienced a culture shock. Colorado was different from the artistic world Mimi grew to love; a world filled with Opera shows, music and art. At that time, Don was also slowly working his way to build his career in the Air Force, which was far from the stability that Mimi had anticipated. To account for her disappointment, Mimi found solace in being a mother. She felt that the children filled a void in her and gave her purpose.
"But if Mimi couldn't have the former, she was more than happy to try her hand at the latter. There was a different sort of distinction in having so many children, and being known as a mother who could easily accomplish such a thing"
Mimi and Don's Relationship
Don (left) and Mimi (right) after Don graduated from his Phd degree.
With his position in the Air Force, Don was rarely at home. Mimi and Don's relationship was distanced, but in the limited time Don was home, they both found a common hobby; Falconry. During weekends, Mimi and Don would trap and train exotic birds. Kolker, the author of the book, brilliantly used falconry as a metaphor for Mimi and Don's relationship;
"Don identified with his birds — soaring where he pleased, returning only when it suited him. And MImi, quite against her will, found herself cast in the role of falconer — domesticating Don, luring him home, laboring under the impressions that she had completely tamed him"
2. The Affected Children
Donald
Young Donald Galvin (source: HVR Book)
Behind closed doors and their seemingly perfect image, the Galvin family was slowly struggling with their children showing symptoms of psychosis. Donald, their first child, was excelling by any measure — handsome, athletic, and popular. And then... during his freshmen year in the Colorado States, Donald started to deteriorate. Donald had fallen behind in his academics and was unable to fit in... even though he desperately tried to fit in. Then came his bizarre repeated visits to the health center; first was a minor injury to his left thumb that he claimed came from a cat's bite and pretty severe body burns. After several psychiatric sessions, it was later revealed... that he had killed the cat slowly and painfully, and the burn was because he ran straight into a bonfire.
And yet, Donald managed to marry Jean. Although their marriage didn't last long, because Donald's mental health continued to spiral down. Then one night, Jean threatened to leave Donald. Donald came home with cyanide pills and attempted to kill Jean before then killing himself. Fortunately, Jean broke away and ran to the police. And Donald was sent to a mental institution; the Colorado State Hospital in Pueblo (or Pueblo) and diagnosed with schizophrenia; the first schizophrenia in the Galvin family. From here on, Donald's life was a revolving door between Pueblo and Hidden Valley Road. The extent of his breakdowns include; carrying all of the furniture out of the house to the hills, pointing a knife at his own mother — Mimi, believing he was the offspring of an octopus, and wearing a bedsheet in the style of a monk to run through the neighborhood — he often stops with a blank stare at the grounds of the Air Force Academy, where he once was a promising student. Oh what could’ve been, but never realized.
Jim
Jim Galvin (Source: hidden-valley-road.com)
Jim was the second son of the Galvin family and was known as the cool brother with the leather jacket. At first, when Donald was beginning to decline, Jim seemed to have his life together. He married a girl named Kathy and had a son named Jimmy. But at home, Jim was starting to hear voices — of people spying on him, following him and people conspiring against him. He turned to alcohol and became violent to Kathy.
Disturbingly, Kathy had alerted Don and Mimi of Jim's condition, but they both brushed it off and underestimated the severity.
“Instead, Kathy saw two people trying hard to pretend the conversation wasn’t happening at all—and, when pressed, questioning the premise of that conversation”
On several days that both Mimi and Don couldn't handle Donald's psychotic breaks, they entrusted Jim to take care of their two daughters — which tragically resulted in both of them being abused by Jim.
Brian Galvin
Brian (far left holding the guitar) with his band. (Source: HVR book)
Brian was the most attractive of all the Galvin boys and was the all-rounder of the family — his natural musical and athletic abilities. Brian started a band with his high-school friends and became pretty successful, later playing in the Air Force Academy and moving to California to pursue his dream. In California, Brian dated a bright and cheerful girl called Noni for a while but they broke up after several months. A month after their breakup, Noni was declared missing. The police found Noni and Brian's body on the floor next to a 0.22 rifle. Brian had shot Noni and then killed himself. While no records have been found of Brian's official schizophrenia diagnosis, the Galvin family learned that Brian had been prescribed Navane— one of the many antipsychotic drugs that treat schizophrenia.
Peter Galvin
Margaret (left), Peter (middle) and Lindsay (right). (source: HVR book)
Peter was the youngest of the 10 Galvin boys. One day, just two months after Brian's death, Don suffered a stroke as he was getting ready to take Peter to his early hockey practice. Peter was there to see it all. It was after this incident, that Peter began to break down. Frist rebelling in his class, then wetting his bed during camp and hitting other campers. Peter was then in and out of hospitals, refusing to take his medications, accept help, and defied all of the advice given to him. He was the rebel of the family. Peter was prescribed so many antipsychotic drugs— up to eight, but nothing worked. In the end, the doctors acquired the court order for ECT (electric shock treatment). ECT is the use of electricity to induce a seizure and calm the brain. In mass media and popular culture, ECT is portrayed as medical torture and thought oppression. But interestingly, a lot of notable and accomplished figures have received the ECT treatment and have advocated for its efficacy — one of them is none other than... Carrie Fisher or better known as the actress who played Princess Leia from Star Wars. Sadly, after years of treatment, Peter now recites the mantra — "I cooperate fully".
"Are you okay?" Lindsay asked Peter. "No. I'm sick of everything that I went through. I want to get a pack of cigarettes and cooperate. I'll go buy it myself and cooperate with you in full to do everything you want me to do. Just don't smoke 'em... I'm cooperating in full. I want to cooperate — do anything for you that I can."
The rebel to a person mantra-ing the word "fully cooperating", huh. I'll leave this thought open for interpretation. Was this a real-life version of the movie One Flew Over the Cuckoo's Nest? or was it Peter's only last-resort treatment. All the more reason you need to read the book.
In the end, tragically, doctors weren't even sure that Peter's schizophrenia diagnosis is accurate. Some doctors posit that Peter might've had Bipolar disorder, after all.
Matthew & Joe
Matthew Galvin (Source: HVR book)
Joe Galvin (Source: HVR book)
Matthew, a promising and talented potter, paid a visit one day to a family friend to show them a vase he had made. While waiting in the living room, suddenly he ripped his clothes off and smashed the vase he had worked so hard on. As his diagnoses progressed, Matt became more convinced that he was Paul McCartney and could control the traffic lights.
Joe, the quiet and reserved one, started fine. He was able to hold a job in the airport when suddenly he refused to receive a promotion and started to send threatening letters to his bosses. He was fired from his job, and from then began to hear voices all the time. Joe believed that he had lived in China in his past life, and communicated to a Chinese emperor in the clouds. But out of all the Galvin boys who were diagnosed with schizophrenia, everyone agreed that Joe was the most poignant in his suffering. He was the only one who could differentiate hallucinations and reality and was conscious enough to want things to stop. He also tried his best in keeping in touch with the family by sending birthday cards and presents. One time, when Michael's grown daughters complained about not being able to afford college books, Joe sent an envelope with $500 with a note saying "for books" — that was the kind of man, Joe was.
The Unaffected Children
John, Michael, Mark, Richard
Jim, Brian, Donald (holding baby Richard), Michael, John. (Source: hidden-valley-road.com)
Mark Galvin (source: HVR book)
Out of the 10 boys, only 4 boys evaded psychosis — John, Michael, Richard, and Mark. After seeing his older brothers having their psychotic breaks one by one, John became fearful that he was going to be next. So he and his wife decided to move away from Denver. Today, he is a music teacher in Idaho. Michael narrowly managed to getaway. During his teenage years, Michael had been prescribed Stelazine— an antipsychotic drug and was two times admitted to hospital psychiatric wards for observation. Michael believed, he wasn't crazy. His tipping point was when he learned to practice meditation and mindfulness. Richard became a mining investor in Denver. Mark was the only one of the Galvin's superb hockey team who was spared from schizophrenia, this revelation hit him the hardest.
“They were the hockey brothers, and everyone else in the family had been little more than background players. Once they had their psychotic breaks, one after the other, it was as if the three most important people in the world to Mark had fallen off the face of the earth.”
The 4-Galvin-Hockey Boys. Clockwise from the top: Peter, Mark, Joe, Matt. Mark was the only Hockey boy who did not get schizophrenia (source: HVR book)
Margaret and Lindsay
Lindsay (left) and Margaret (right) holding each other. (source: Washington Post)
Margaret and Lindsay were the last girls of the Galvin family. Lindsay was sent away to live with Nancy Gary (a family friend), while Don and Mimi were struggling with her brother's schizophrenia psychosis breaks. In the end, her approach to dealing with the trauma was to have as little contact as possible.
Every decision Margaret made was, in some way, oriented around the ability to avoid going home. Home was where Peter was urinating on the floor because a devil was under the house. Home was where Donald was still ranting and raving about his ex-wife, a decade after the divorce. Home was where Matt was cooling off, after his psychotic break at the Gary's house. And home was where Jim was still welcome to drop by anytime he wanted.
Lindsay, the youngest of the Galvin family, at first felt envious of Margaret. Unlike her, Margaret had a chance to get away from it all, and Lindsay was left alone to live with her older schizophrenic brothers. She felt she lost an ally. Lindsay also initially partly blamed her mother for all the trauma she went through during childhood; how her mother was always protecting the mentally ill children, in the expense of her unaffected children; Mimi was in denial of Jim's mental illness, despite many warning signs beforehand, and even entrusted both Margaret and Lindsay to sleepover in Jim's house which resulted in both of them being abused as a child. But in one turning point, Lindsay managed to get proper help by consulting a therapist called Silvern. She came to terms with her trauma and let down her armor to trust new people. In the end, Lindsay took care of Mimi when she was old and sick. Lindsay took care of her brothers too. At that moment, Lindsay finally forgave her mother and understood where she was coming from.
“When she thought about this, Lindsay realized that the person who had really known what her brothers liked, what would make a difference to them, was her mother. This was what kept Lindsay up late now: the idea that the true champion of the family, the gold medal winner in the Empathy Olympics, could have been Mimi Galvin all along. “Now suddenly without her here,” Lindsay said, “I’m understanding where she was coming from.”
Unlike Margaret, Lindsay approached her trauma by confronting it firsthand. When Mimi finally died, Lindsay took care of her sick brothers.
She believed the next step in her recovery, in the process of taking control of her life, would be to try to go back and help those who seemed left behind. Why wasn't it me? Lindsay would think. I owe him something because it wasn't me.
How do you think confronting her brother's illnesses helps Lindsay in coping with her trauma?
The sister's coping mechanisms are very different; one avoids completely, one tackle it directly. Can you relate to any of the sister's coping mechanisms?
Schizophrenia: The Scientific Side
For clarity, I think this part is best formatted in dot-point form.
What is Schizophrenia?
There is a common misconception that schizophrenia is the splitting of one's personality. But in reality, schizophrenia is:
"It is about walling oneself off from consciousness, first slowly and then all at once, until you are no longer accessing anything that others accept as real"
Timeline of Schizophrenia
1915s
First major work about schizophrenia: Memoirs of My Nervous Illness, by Daniel Paul Schreber.
Schreber's book was debated by Carl Jung and Sigmond Freud. Carl Jung believed the cause of schizophrenia was the environment, while Sigmond Freud believed that schizophrenia stemmed from sexual inclinations.
Outdated Gold Standard of Treatments:
Insulin Shock Therapy — "patient injected with insulin to induce a short coma; the theory was that regular treatments a coma a day, might slowly chip away at the effects of psychosis."
Lobotomy — neurosurgical treatment of a mental disorder that involves severing connections in the brain's prefrontal cortex.
Eugenics — Sterilizing the mentally ill.
1948s
Frieda Fromm Reichmann — a therapist in Chestnut Lodge
Frieda Fromm Reichmann (source: peerlessrockville)
pioneered the misconception that mothers were to blame for a child's schizophrenia diagnosis
"the dangerous influence of the undesirable domineering mother on the development of her children" calling such mothers " the main family problems"
Schizophrenogenic mother — the idea that maternal overprotection and maternal rejection could cause schizophrenia
Double Bind Theory — when a mother says something but the way she says it produces a contradictory message.
believed to be the main cause of schizophrenia, which resulted in children being "tormented by their mothers" and eventually "retreat into a world of their own"
1950s
Genain Quadruplets. All sisters were diagnosed with schizophrenia.
Doctor Rosenthal — "first researchers to suggest that genetics and the environment might interact with each other to produce the symptoms of schizophrenia"
researched the Genain quadruplets: quadruplet girls with schizophrenia
"Those who emphasize the genetic contribution seldom consider in earnest the role that environment might play, and environmentalists usually pay lip service to the idea that hereditary factors may eventually have to be considered as well.”
Polygenic Theory of Schizophrenia — schizophrenia is caused by not just one gene but a chorus of many genes, working in tandem with, or perhaps activated by, various environmental factors.
1956s
Wide use of the antipsychotic drug, Thorazine, to treat schizophrenia 💊
drug believed to be able to "treat the mentally ill without expensive person-to-person contact", likened the effects of the drug to "chemical lobotomy"
"But Thorazine was no cure — it reduced some symptoms, but at best forced an unsteady truce with the illness itself"
Side effects: tremors, restlessness, loss of muscle tone, postural disorders
"and if they went off the drug at any point, the next round of psychosis tended to be more acute than the last"
How Thorazine works?
Dopamine Hypothesis — "notion that overactive receptors somehow caused the disease"
Swedish neuropharmacologist named Arvid Carlsson suggested that Thorazine treated the symptoms of schizophrenia by blocking the brain's dopamine receptors, stopping many of those hallucinogenics, deranged messages from spiraling out of control."
Problem with the hypothesis: Clozapine, a neuroleptic drug that alleviated schizophrenia's symptoms better than Thorazine, worked on those same dopamine receptors in the opposite way (increasing dopamine levels where Thorazine had inhibited them).
Clozapine's side effects can also be dangerous: low blood pressure and seizures
These medications helped the Galvin brother’s symptoms the most, although it was various side effects; involuntary movements of the tongue, lips, and jaw. Although the medications could not prevent them from having multiple hospitalizations. The treatments were not enough to keep them stable to hold jobs and have meaningful relationships with other people.
1979
Richard James Wyatt (source: Nature)
Richard Wyatt — neuropsychiatrist who explored not therapy but the effects of mental illness on the brain itself
"published research showing that people with schizophrenia had more cerebrospinal fluid in their brain ventricles"
1987
Daniel Weinberger — in Richard Wyatt’s lab
Daniel Weinberger (Source: John Hopkins Neuroscience department)
published paper that revolutionized schizophrenia researchers to focus on pre-adolescent stages (until then, most researchers had been fixated on post-adolescence as the onset of schizophrenia)
“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”
1980-the 2000s
Lynn Delisi
Lynn DeLisi — a psychiatrist at the National Institute of Mental Health
Goal: assess schizophrenia in multiplex families (in multiple non-identical children in one family) and compare their genetic profiles to find the biomarkers of schizophrenia
Following the advancements in the human genome project — the ability to map the structure, organization, and function of every single human gene (entire DNA blueprint of building a human)
Found: relationship of genome's SHANK genes to schizophrenia and other mental illnesses
Robert Freedman — professor of psychiatry at University of Colorado
hypothesized that schizophrenia patients have a common problem with their gating in response to a stimuli
Double click test — tested brain waves when test subjects hear 2 identical click noises, played simultaneously with a short interval between them
Normal Brain: recorded large brain wave reacting to first click, compared to lower brain wave reacting to the second click
It learns from what it perceives, so it doesn't have to start from zero if it hears the same thing
Subjects with Schizophrenia: two brain waves of equal size reacting to both clicks
The brain needed to react all over again to the second click — even though they had just heard the same click a fraction of a second earlier
What if the problem with schizophrenia patients wasn't that they lacked the ability to respond to so many stimuli, but that they lacked the ability not to? What if their brains weren't overloaded, but lacked inhibition?
location of where receptor problem took place > chromosome that was home to gene CHRNA7 — which the body uses to make a7 receptor (inhibitory interneuron mechanism — important to retain information so we don’t have to process the same information over again).
To repair CHRNA7 flaws in the womb: Need choline (which is in many foods we eat daily; vegetables, meat, eggs, and poultry)
2015 Ongoing Experiment: ask pregnant women to take high doses of choline
Anti-Medication Movements
activists backed with studies showing that many schizophrenia patients experience good long-term outcomes without prescription drugs
the shift from psychiatry treatments to be pill-oriented and "one-size-fits-all", towards recognizing schizophrenia diagnoses and treatment as a spectrum
Advocacy for "Early detection and soft intervention model of care" — a mixture of talk therapy and family support to keep the amount of medication to a minimum
Robert Freedman.
Future of schizophrenia
Hopefully, with the breakthroughs and advances in computer science, neuroimaging, and also genome sequencing, scientists could solve the mysteries surrounding schizophrenia. One of the most hopeful stories that came out of Hidden Valley Road is Katy, Lindsay's daughter, who now is interning in Robert Freedman's lab to help study the illness that has affected her family.
Conclusion
Hidden Valley Road by Robert Kolker depicts not only the painful experience of patients slowly losing their reality in their experience of schizophrenia, but also the effects of schizophrenia on other family members. Kolker reminds us that while genes play a role in our being — we are “in some way, a product of the people who surround us — the people we’re forced to grow up with, and the people we choose to be with later.”
We've come a long way from the outdated misconception that "mentally ill people weren't people at all" into advocacy for "person living with mental illness". From painful practices of lobotomy and overuse of antipsychotic drugs, and towards early-on prenatal treatments and familial support to prevent detrimental psychosis. This model of progress, one that focuses on small gradual progress through collaborative research efforts, will pave the way to one day fully understanding and solving schizophrenia.
Bonus: If you want to learn more about schizophrenia! ☁️
Try watching this wonderful youtube video, by Special Books by Special Kids, which interviews Cecilia. In this deeply honest interview, Cecilia discussed her experience with schizophrenia and how important education about schizophrenia is. Thank you Chris for making the video, and thank you Cecilia for sharing!
Important highlights:
Cecilia: They thought that I've had schizophrenia all of my life. It started out as shadows and whispers and just sort of developed into what I have now. But at first, I thought I was possessed. And let me tell you, that's a lot scarier than realizing you have a chemical imbalance inside your head. And that's why I promote education so much because it's often said that you fear what you don’t understand. So me understanding more about my diagnosis makes me less afraid.
Question: When you tell somebody that you have schizophrenia how do you want them to react?
Cecilia: I want them to not be afraid of me and not to look at me any differently than they had looked at me before.
Question: What do you fear others saying?
Cecilia: I'm afraid that they will think of me as a freak. I've been called a freak. I've been called crazy. I've been called deranged. I've been called very nasty words.
Question: What would you prefer to be called?
Cecilia: Cecilia. (laughter) My name. I've joked that if there are Academy Awards for just acting normal, people who have schizophrenia would definitely be nominated. So sometimes you're giving 100% of your energy and effort just to staying composed.
Hey, I’m Jenn —
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