Hidden Valley Road: Inside the Mind of an American Family

2009, Cambridge, Massachusetts

Frustrated with the nonspecific data from the Human Genome Project, a pharmaceutical researcher at Amgen named Stefan McDonough began wondering about the possibility of studying schizophrenia in families. He soon learned about DeLisi’s research, and Amgen took ownership of her half of the material she had collected.

With this data, McDonough and DeLisi embarked on a new study focused on families with the highest incidences of schizophrenia. In the Galvin family, they identified a mutation in a gene called SHANK2: “The SHANK2 gene encodes the proteins that help brain synapses to transmit signals and the neurons to react quickly. The Galvins’ mutation significantly alters the protein that SHANK2 produces” (270). Although this particular mutation wasn’t necessarily implicated in all or even most cases of schizophrenia, the researchers’ hoped that the discovery could offer new insight into possible avenues of treatment. Among other things, its location suggested a link between schizophrenia and several other psychiatric and developmental disorders associated with SHANK genes. The implication was that the same mutations might give rise to different sets of symptoms in different individuals—in other words, that superficially distinct disorders might all be symptoms of a more fundamental neurological problem.

The SHANK2 mutation came from Mimi’s side of the family, which surprised the Galvins. Given the lack of mental illness in Mimi's family, DeLisi speculated that being female might have a protective effect, or that the SHANK2 mutation might have been triggered as a result of its interaction with an as-yet undiscovered gene from Don’s side of the family.

2016, University of Colorado Medical Center, Denver, Colorado

After his research into nicotine and schizophrenia went nowhere, Freedman began looking for other ways to put his knowledge of the CHRNA7 mutation to use. Because CHRNA7 develops early in pregnancy, he wondered whether the most effective way to “treat” schizophrenia might be in utero when its functioning is dependent not on acetylcholine but choline—a common nutrient. Freedman therefore designed a study where some expectant mothers received high doses of choline, while others would follow a standard diet. He found that babies who received higher doses of choline were more likely to pass the double-click test regardless of whether they had a CHRNA7 mutation, and by 2017, the AMA was recommending that pregnant women increase their choline intake.

Freedman’s study won him an achievement award in the field, which he received in 2015. While at the symposium, he reconnected with the Garys, who had donated to psychiatric research over the years, as well as Lindsay, whom Nancy Gary brought with her to the event.

Mimi, Margaret, and Lindsay

By 2016, DeLisi was on the cusp of publishing her findings on SHANK2. She therefore asked the Galvins (including Don and Mimi’s now-adult grandchildren) to provide blood samples; the idea was to have as many healthy controls as possible. Not everyone in the family agreed to participate, however: "Michael came, but he was not pleased; it felt to him like pouring salt on an old wound. […] The next generation had especially spotty turnout.” (280-281).

Mimi was by this point 90 and no longer able to care for her sick sons, though she continued to be a commanding presence in her children’s lives. In early 2017, she suffered her second stroke. Lindsay—already frustrated with Margaret for not taking a more active role in their brothers’ care—felt abandoned when Margaret visited for only a few days following Mimi’s hospitalization: “Lindsay, furious with her sister, found herself fuming about any family member who didn’t come to see Mimi” (287). In fact, the only other sibling who deeply involved himself in Mimi’s care was Michael, who had previously worked in hospice. 

Mimi

Mimi developed aphasia after her second stroke, and ongoing health problems kept her confined to bed; however, the difficulty she had communicating didn’t stop her from trying to speak, and she could be very demanding with her caretakers. In addition to the care she received from Lindsay and Michael, Donald regularly visited Mimi, now in an assisted living facility and still deeply delusional about his role as the head of the family: “In these fantasies, Donald isn’t just in charge, he is superhumanly potent. Donald said he sired every single member of his family, except for the ones he doesn’t like” (291).

One day, Mimi complained of a bad headache, and Lindsay realized she was having another stroke. Her family and caretakers administered drugs to keep her comfortable, and over the next three days, most of her children visited to say their goodbyes.

Mimi died in her sleep on July 17. Michael, who had been by his mother’s side, spent the rest of the day grieving with Lindsay. The next day, the pair of them went out into the rain and laughed together, signifying a kind of release.

Lindsay

The day before their mother’s funeral, Lindsay visited Peter at his nursing home and took him out for lunch. Peter was generally cheerful and talkative throughout, though resistant to discussing his ECT treatments, which over the years had caused him to experience memory loss. After returning Peter to the nursing home, Lindsay picked Matt up at his apartment and took him out to lunch as well. Prone to moodiness, Matt’s general sense of resentment was exacerbated by the loss of his car, which was totaled when someone rear-ended him.

Matt declined the opportunity to have dinner at Hidden Valley Ranch later that evening, but Mark, John, Michael, and Donald all joined Lindsay there. In Lindsay’s estimation, Richard declined to come because Mimi left him out of the will, though Richard insisted he simply didn’t like the fact that the family’s conversation always centered on the sick siblings. Margaret, meanwhile, had said she didn’t want to spend the night at Hidden Valley, much to Lindsay’s annoyance.

Donald kept to himself throughout the evening; he wasn’t particularly sad about Mimi’s death, believing she was reborn at sea and now in the care of an octopus. Towards the end of the night, his siblings brought out a cake in honor of his 72nd birthday, which he seemed to appreciate.