Family Impacts Awareness and Research of Schizophrenia While Living With the Condition at Home

In part 2 of this 6-part video series, Lindsay Galvin Rauch explored how her family was able to impact schizophrenia research the awareness of the condition. She also shares the choice her parents were faced with at the time in caring for her brothers with schizophrenia: to live with them or institutionalize them. Galvin Rauch describes her mother as a "warrior" and a "heroine" who worked through the tough job of both caring for the boys with schizophrenia and also for the girls who did not have the condition, all under one roof.

Throughout the series, Psych Congress steering committee member and CEO of Orbit Health Telepsychiatry, Encino, California, Edward Kaftarian, MD, interviews Galvin Rauch about her journey from victim, to advocate, to champion.

Galvin Rauch and author Robert Kolker were one of this year's featured sessions at Psych Congress in San Antonio, Texas. Their session "Hidden Valley Road: A Story of Family, Trauma, and Hope" walked attendees through the writing of the critically acclaimed novel “Hidden Valley Road: Inside the Mind of an American Family” that centered around Galvin Rauch's family and their contribution to critical scientific discoveries in schizophrenia.

Catch up on the series:

Part 1: Galvin Rauch shares her background of growing up in a family of 12 siblings, 6 of whom were diagnosed with schizophrenia, how her mother utilized hope and knowledge to become an advocate, and how Galvin Rauch came to find therapy as a healing resource for her trauma.

Read the transcript:

Dr Kaftarian:  Also, I'd like to ask you a little bit about how your family sacrificed so that there can be a greater understanding of schizophrenia. If you could tell us how that happened, that would be enlightening?

Lindsay Galvin Rauch:  My parents took a different path than most families take. At the time, when this was happening to our family, psychology and psychiatry were in 2  very separate camps, and they were warring factions. They were blaming each other for all of the problems of the mental health world.

The psychologists were saying they need more therapy and the psychiatrists saying they need better medicine. My parents took the camp of the psychiatry camp, for sure. They did, as a result of schizophrenogenic mom.

Dr Kaftarian:  Lindsay, your family sacrificed so that we can gain a better understanding of schizophrenia. I was wondering if you can share how your family was able to impact, I guess, the research and also maybe the awareness of the condition and how people perceive that condition? I threw a lot at you.

Lindsay Galvin Rauch:  I can start with the sacrifice. Let's go there because that was what I heard the first time. The biggest sacrifice that my parents made was in allowing their affected children to live with them and live with the unaffected children. My unaffected siblings have some resentment around that.

It's taken a long time to heal that resentment because they didn't kick them out of the house and have them live on the streets, or institutionalize them. They didn't have the money to put them in...That was at a time where Reagan had defunded all the major mental health hospitals in the country.

There really were no options for my parents. You either had to have the money to put somebody in a nice cushy hospital, or they could live on the streets. My parents had them. That's probably the biggest sacrifice is that their unaffected children lived and grew up with the affected siblings and endured a lot of trauma as a result.

Dr Kaftarian:  Wow. It's almost like a "Sophie's Choice." It's almost like your mom was put in a position where she had a number of bad options, and she chose love, I guess, over abandonment, which would have been a very difficult position to take in that time.

Essentially, it sounds like you're saying is that your siblings, the ones that felt that she made the wrong decision, maybe they were resentful because their mother, in their eyes, may have turned her back on them because they were salvageable whereas the others were disposable because their brains weren't working. Is that a fair statement?

Lindsay Galvin Rauch:  Absolutely. I would say, absolutely. As Bob says so eloquently in the book, when a family has any disability, whether it's schizophrenia or an amputated leg, the family tends to tilt towards the disabled. Those that are the not disabled, sometimes get the short end of the stick. Absolutely.

Dr Kaftarian:  The ones that are disabled suck up the oxygen and there's none left for the ones that are unaffected. It's interesting because your life story and our discussions, there's a underlying theme of victimhood versus heroism, I guess if that's the opposite of being a victim.

Galvin Rauch: Warrior. 

Dr Kaftarian:  Warrior, OK. A warrior versus victim.

Lindsay Galvin Rauch:  I do think my mom is a heroine. Absolutely.

Dr Kaftarian: It sounds like that was something that she was in her. She was a hero from the beginning, and it wasn't like she needed any transition. These were her children, and she loved them regardless of how healthy or unhealthy they were mentally.

Lindsay Galvin Rauch:  They struggled with those decisions, my parents. They really butt heads over this. My dad felt that the unaffected children should stay home, and the affected children, they should find an alternative for.

They did that with my brother, Brian, who they didn't know at the time that he was ill, but they let him go and live in California and join a rock band. The end result was even greater tragedy.

That was a turning point for my father. At that point, my mother had the say as to keeping those affected kids close to home and taking care of them.

Lindsay Mary Galvin Rauch, is the youngest of twelve siblings, six of whom were diagnosed with schizophrenia—becoming one of the first families to be studied by the National Institute of Mental Health and the subject matter of Oprah's Book Club Selection, “Hidden Valley Road - Inside the Mind of an American Family” by Robert Kolker. Her journey inspired her to evolve from victim, to survivor, to advocate. She is also an accomplished co-owner of a meeting and event company for nearly 30 years, where she partners with industry-leading organizations, hospitals, doctors, and other keynote experts to produce impactful functions designed to engage and educate the public.

Edward Kaftarian, MD is a nationally recognized psychiatrist and leader in the field of telepsychiatry and healthcare technology. Trained at the Johns Hopkins Hospital, he is board-certified in Psychiatry, Forensic Psychiatry and Addiction Medicine. Dr Kaftarian has served in a variety of executive roles within the California prison system, including chief psychiatrist, senior psychiatrist, medical director, and director of pharmacy. He is the founder of California’s Statewide Prison Telepsychiatry Program, which is the largest correctional telepsychiatry program in the world. Dr Kaftarian is currently the Chairman and CEO of Orbit Health Telepsychiatry, a company that provides telepsychiatry services to jails and prisons.