Beyond the Pages: Stories Written, Lived and Seen

By Kirsten Murray 

In 2021, approximately 1 in 5 individuals were diagnosed with a mental health disorder, and less than 1% of those were individuals diagnosed with schizophrenia per the National Alliance of Mental Illness (NAMI). While schizophrenia is rare, it is also not well understood. Schizophrenia can often lead to differences in how an affected person behaves, thinks, and even feels. It is a serious mental illness that can have devastating effects on those who are affected as well as their loved ones. In addition to there being stigma surrounding the diagnosis, affected individuals may experience health, social, and economic challenges. While most cases of schizophrenia are not known to have a single genetic cause, it is thought that a mix of genetics, brain chemistry, and environment play a factor. In recent years, media has become more involved in covering those with mental illness, including schizophrenia.

The Book

Hidden Valley Road: Inside the Mind of an American Family by Robert Kolker was released in 2020 and is an account of the Galvin family. The novel follows the Galvin parents, Don and Mimi, and their 12 children: Donald Jr., James, John, Brian, Michael, Richard, Joseph, Mark, Matthew, Peter, Margaret, and Mary “Lindsay”. The book walks the reader through the early days of their family, the birth of each child, and the diagnosis of schizophrenia for six of the twelve children. Don worked for the Air Force Academy and was said to emphasize success within the family. He often referred to the boys as their birth order rather than their names. Similarly, Mimi stayed home to care for the children and is often described as being obsessed with perfection. However, their lives were forever changed following the diagnosis of schizophrenia for their eldest son, Donald Jr., in the 1960s.  

While trying to adjust to a new diagnosis that led Donald Jr. to be placed in a state hospital multiple times, James began to start having delusions. Not longer after, Brian also began to start exhibiting symptoms that led to severe consequences in 1973. In 1975, Peter suffered from a psychotic break which ultimately led to his diagnosis, and Matthew’s diagnosis came shortly after in 1976. The final brother to be diagnosed with schizophrenia was Joseph in 1982.

One of the things I found most intriguing about this book is the writer’s ability to seamlessly move between the story of the Galvin family and research that was being done on schizophrenia. This format allowed me to better understand where the scientific community was at regarding the understanding of what schizophrenia is and how someone develops the condition. From the idea that a “refrigerator mom” caused schizophrenia through a lack of a nurturing environment in childhood, to the discovery of the role genetics play in this condition, Kolker captured the evolution of the thought process the world went through when it comes to mental illness. Furthermore, the attention to detail Kolker adds into the book serves to draw the reader in, and I was left feeling as though I really knew the ins and outs of the Galvin family upon finishing the book. Overall, while I felt some parts of the book were hard to read due to the sensitive topics, the book was an interesting read that provoked a variety of feelings, and on a scale of 1-5, I would rate the book as a 4.5.

The Show

Four years after the release of Hidden Valley Road, the streaming service Max, previously HBO Max, and Discovery+ released a docuseries called Six Schizophrenic Brothers which again followed the story of the Galvin family. This docuseries allows us to hear directly from some of the Galvin siblings that are still living with Mary as one of the main narrators. Their story sheds light on challenges that can come from a diagnosis of schizophrenia, not only for the family, but for the individuals themselves. In the docuseries, we get to hear from three of the brothers that were diagnosed with schizophrenia and what that meant for their lives as well as from Mary’s children.

While the book covered everything that happened in the past for the Galvin family, the docuseries give the audience the chance to catch up with where the family is at now. The docuseries provided a unique twist where the audience gets to hear from Donald Jr., Matthew, and Peter. Additionally, some of the Galvin siblings declined to be part of the docuseries which provided a unique opportunity to see how the diagnosis of schizophrenia for half of the Galvin siblings and events affected each family member differently. While some siblings have chosen to distance themselves, Mary has become a sort of caregiver for her brothers that were diagnosed with schizophrenia. She even introduced her children to her brothers in an effort to help erase the stigma surrounding schizophrenia. However, as we see in the docuseries, the interactions Mary’s son had with his uncles at a young age cause a tremendous amount of anxiety over whether he would also develop schizophrenia. I enjoyed getting the chance to see where the family is at now and to better understand family dynamics and relationships. I also found that the docuseries didn’t have as many details surrounding traumatic events but rather presented them as a big picture for the continually developing story. Overall, the docuseries was intriguing and provided a point of view that the book could not provide by continuing their stories.  

Personally, I would give the docuseries a 4 out of 5 rating primarily because Mary has spoken out to discuss how she feels the docuseries perpetrated the stigma surrounding the diagnosis of schizophrenia rather than raising awareness as she had hoped to do. While both the book and docuseries cover various traumas, Mary felt as though the docuseries misrepresented people and the events surrounding the diagnosis of schizophrenia for her brothers.

Neither the book or docuseries shy away from discussing difficulties faced by the family including violence, sexual assault, murder, and suicide. I would encourage everyone that may be sensitive to these themes to exercise caution before reading this book or watching the docuseries. The docuseries has slightly less detail surrounding these topics if you are interested in hearing the story but are sensitive to these topics. For those interested in reading the Galvin story, a copy of Hidden Valley Road can be purchased through most large retailers: Amazon, Target, Walmart, Half-Priced Books, etc. Additionally, the book can be borrowed from most local libraries.

Current Genetic Landscape

The story of the Galvin family is striking and brings up the question of how much genetics likely plays a role in the development of schizophrenia given that 50% (1 in 2) of their children developed schizophrenia. During their time in and out of medical facilities, all of the Galvin children that were diagnosed with schizophrenia were found to have a mutation in the SHANK2 gene on chromosome 11. The SHANK2 gene has been associated with autism spectrum disorder as well as other neurodevelopmental disorders, and it is currently a candidate gene for schizophrenia. Other genetic conditions such as 22q11.2 deletion syndrome, CACNA1C-related conditions, 15q13.3 recurrent deletion syndrome, 17q12 recurrent deletion syndrome, and GRIN2A-related conditions have been noted to have an association with schizophrenia. While most of these conditions have additional findings associated with them, it is possible that there are mutations associated with just psychiatric findings.  

Based on the role that genetics can play in the development of mental illness and the association of mental illnesses with certain genetic conditions, I wondered how often these individuals were seeing a genetics professional such as a genetic counselor. A quick search on the National Society of Genetic Counselors (NSGC)’s ‘Find a Genetic Counselor’ tool for genetic counselors working primarily in psychiatric care turned up empty, and there are no listed genetic counselors in Texas with a primary focus in psychiatric care that are easily found through internet searches. The closest you can get would be a general genetics clinic, and even then, would other providers refer out for mental health conditions?

Furthermore, there has been a boom in the world of pharmacogenomics, especially for oncology, cardiology, and psychiatric care. It has been noted that certain genetic variants can increase/decrease the effectiveness of certain treatments and medications. In order for patients to pursue treatment based on their genetics, genetic testing has to be done and having genetic counselors available to provide pre- and posttest counseling could greatly benefit the patient and other providers by increasing their understanding.

A majority of mental illnesses can be seen running in families, and some people might attribute this to genetics alone. However, most mental illnesses are actually a mix of genetic predispositions and environmental factors. This can be seen in both the book and docuseries covering the Galvin family as there were multiple traumas endured by the children along with an identified genetic variant. Given the complex nature of multifactorial inheritance and our ever-evolving knowledge of genetics, it would be worthwhile to investigate ways that genetic counselors can be involved in psychiatric care to help explain the role that genetics plays to the patient and even family members while also providing support through a difficult period.

References:

Kolker, R. (2020). Hidden Valley Road: Inside the Mind of an American Family. First large print edition. New York, Random House Large Print.

Mulson, J., 2024. Colorado Springs family refutes new Max documentary ‘Six Schizophrenic Brothers’. The Gazzette. Retrieved from https://gazette.com/

NAMI, 2023. Mental Health By the Numbers. National Alliance on Mental Illness (NAMI). Retrieved from: https://www.nami.org/about-mental-illness

Six Schizophrenic Brothers. Directed by Lee Phillips, Warners Bros Discovery, 2024.