One of psychology’s most elusive concepts is the idea of the self. In his 1993 classic, Listening to Prozac, the psychiatrist Peter D. Kramer observed that the newly popular antidepressant might not just mitigate disease; it might also reshape identity. On Prozac, one of his patients became “less bristling, had fewer rough edges.” The medication seemed to have “redefined what was essential and what was contingent about his personality,” Kramer wrote, noting that “Prozac seemed to give social confidence to the habitually timid, to make the sensitive brash, to lend the introvert the social skills of a salesman.”
These drug-induced changes—the product of what Kramer dubbed “cosmetic psychopharmacology”—were mostly welcome, he suggested. But they were also philosophically troubling. How, the psychiatrist wondered, could the effects of Prozac be reconciled with “our notion of the continuous, autobiographical human self?”
I thought of Kramer while reading the nonfiction work of Robert Kolker, especially his newest book, The Vanishing Family: Love, Fate, and the Quest to End Dementia. For Kolker, the slipperiness of identity—whether altered by mental illness, dementia, or deliberate reinvention—has been a recurrent theme, and an increasingly self-conscious one. In The Vanishing Family, the transformation or erosion of personality is the dismaying, ineluctable consequence of a rare kind of dementia. But as the disease batters one sibling after another, it turns out to be the besieged family, heroic in its adaptability, that provides safe harbor.
Kolker’s first book, Lost Girls, attempted to reclaim the individuality of five possible victims of the Gilgo Beach killer. In Kolker’s view, these young women had been unfairly dismissed by much of the media as undifferentiated sex workers who had foolishly tempted fate. With the cooperation of their family and friends, Kolker assembled detailed mosaics of the women’s lives as they sloughed off the past and constructed new identities as escorts. Unfortunately, on the page, their stories of hard luck, economic marginality, and abusive relationships seemed to blur into one another, and Kolker’s serpentine account of the botched criminal investigation ricocheted into a series of dead ends. (The case has since been mostly solved, with the architect Rex Heuermann pleading guilty to killing seven women, including four of Kolker’s subjects.)
Kolker’s next two books—Hidden Valley Road and now The Vanishing Family—have been more successful. Both draw on his talent for inspiring trust, and they share similar narrative strategies and concerns. In each case, Kolker burrows deeply into the psychological impact of an inherited disease on a single family and interweaves the personal tragedy with a more hopeful tale of scientific progress and discovery.
Hidden Valley Road, published in 2020, follows the unraveling of the Galvins of Colorado, as six of 10 brothers are diagnosed with schizophrenia. Kolker examines in intimate detail how these boys spiraled into illness, each in a distinctive way, and tracks the devastating effects. “The symptoms muffle nothing and amplify everything,” Kolker writes, and they alter “everything about the internal logic of that family.” The Galvins seem for a while to inhabit “a world with no consequences,” where violence and sexual abuse are rampant. The family’s healthy members struggle to reconcile their love for their sick siblings with the horror of their actions, and to disentangle their brothers’ core personalities from the distortions of psychosis.
The family’s contribution to the greater good mitigates the story’s darkness. In the early 1960s, when the oldest Galvin son, Donald, was first referred to a psychologist, scientific understanding of schizophrenia was still rudimentary. The Galvins, by donating their DNA and submitting to brain testing, have helped advance it, Kolker suggests; their blood samples became a cornerstone of the National Institute of Mental Health’s research into the genetics of the disease.
The malleability of the self is an even more explicit theme in The Vanishing Family. This time, Kolker focuses on a Western Pennsylvania family ravaged by an inherited type of frontotemporal dementia (FTD) that initially attacks not memory but personality, eroding such qualities as emotional intelligence and self-restraint. Kolker tackles the same issue that Kramer raised decades earlier and that philosophers have long pondered: in Kolker’s words, “the question of the self—how much of our personality is ephemeral, and what, if anything, about us is immutable.”
He is equally concerned with how this particular disease affects families. “What is it like to witness a person you love start to gradually disappear?” he asks. “How do you feel safe,” he adds, “knowing that it is in your family’s essential nature for your identities to be fragile, ephemeral, ever close to expiration?”
One of the dilemmas relatives face is whether to test for the genetic mutation that will augur their own dissolution. Some hesitancy is natural. Even when symptoms appear, denial is common, as are both misdiagnosis and magical thinking. Other, healthy family members sense the signs of dementia in their loved ones first, but even they can’t be sure what is happening. Kolker describes the psychological and economic fallout as five of the family’s nine children, and later some of their children, discover that they have inherited a destructive gene. Those afflicted, generally in their 40s when symptoms first appear, have increasing difficulty recognizing social cues. With a “breakdown in social cognition,” they can become emotionally disinhibited. “With FTD,” Kolker writes, “there is no longer such a thing as embarrassment, or shame.” The disinhibition calls to mind the effects of Prozac and its successor drugs, but in this instance, the consequences are unstable, and any benefits are fleeting.
As the disease progresses, in Kolker’s telling, those with FTD retreat emotionally. “Slowly,” he writes, “impulse control and emotional depth became things of the past. Some of them simply stopped doing much of anything, ignoring their children and spouses. Others developed unpredictable, impulsive behavior, losing all semblance of empathy or a conscience.” Some of the sufferers even “took on an entirely new set of opinions and beliefs.”
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Meanwhile, as with the Galvins, their intimates confront the difficulty of disentangling the effects of disease from personality—of detecting surviving facets of a loved one and trying to appreciate whatever new traits have emerged. But that also means that “the sense of loss is ongoing—like witnessing a living death,” Kolker writes.
The author’s greatest achievement is once again reportorial. He has persuaded nearly every family member, the sick and the well, to confide in him. (Unlike in Hidden Valley Road, he withholds the family’s last name and also changes some first names for privacy.) One sister, Sue, who has “an almost ruthless sense of responsibility,” becomes the primary caregiver for the afflicted siblings, forming a particularly enduring bond with her older sister Christy. Barb, the youngest sister, navigates medical bureaucracies, consults with scientists, and starts an advocacy organization for FTD research. But for years, Barb refuses to learn her own genetic fate, and her indecision becomes the frame of Kolker’s narrative.
Paralleling the family’s ordeals is Kolker’s account of the science that may offer hope to those with FTD and other dementias, notably Alzheimer’s disease. He distinguishes this variant of FTD from Alzheimer’s by noting its link to a single genetic mutation. Alzheimer’s, by contrast, has been loosely associated with multiple genes and is typically less heritable. The exception, which he fails to mention, is early-onset Alzheimer’s, a rare version of the disease that is sometimes tied to a single, autosomal dominant genetic mutation, just like FTD.
The Vanishing Family is, as much as anything, a plea for accelerated attention to either a medical cure or a genetic fix. Because FTD, like Alzheimer’s, causes tau tangles—abnormal clumps of protein in the brain that disrupt cognitive function—Kolker argues that a focus on FTD will likely also benefit the far larger population of Alzheimer’s patients. So far, effective treatments for all of these dementias, let alone a cure, remain elusive.
In probing the question of the self and its vulnerabilities, Kolker finds himself, like Kramer, on challenging philosophical terrain, with no definitive answers. But he cites approvingly the British philosopher Harry Lesser, who argues that the dementia-impaired self speaks to a universal human fragility. “For all of us,” Kolker writes, “the self changes and, yes, it withers away. But it can never vanish completely.”
A similar sturdiness attaches to the brave siblings who have invited Kolker into their lives. The book’s title, however powerful, is arguably a misnomer. This precarious, battered family doesn’t so much vanish as reconstitute itself. Healthy relatives, as well as some spouses and partners, do what they can to provide care and advocate for those in need. Thanks to their passionate involvement, a sprawling, disease-haunted family becomes, if anything, more unified—bonded, however incompletely and imperfectly, by love.