Ten doctors, a lawyer, a historian, and a theologian walk into a Harvard conference room. This isn’t the start of a bad joke, but the beginning of a consequential decision—an attempt to define death itself. Or at least to formulate a new definition that reflected the advances in medicine during the 1960s. For much of medical history before then, “cardio-respiratory failure was the only way to die.” But now ventilators could keep someone’s heart beating even if they had no other outward signs of life. This new medical technology helped pave the way for innovations in organ preservation and donation. It also meant that a new way to understand death, legally and medically, was needed. This is how the concept of “brain death” entered the public record.
The group at Harvard, convened by the bioethicist Henry Beecher, produced a report in 1967 on brain death for the Journal of the American Medical Association. The report’s sole citation was a speech by the pope. The committee, Rachel Aviv explained in a 2018 New Yorker article, “proposed that the irreversible destruction of the brain should be defined as death.” The reasoning was twofold: “to relieve the burden on families and hospitals, which were providing futile care to patients who would never recover, and to address the fact that ‘obsolete criteria for the definition of death can lead to controversy in obtaining organs for transplantation.’” Quoting the philosopher Peter Singer, Aviv noted that the idea of brain death was “an ethical choice masquerading as a medical fact.”
Even as a flurry of states began to enshrine this definition into law, “legal ambiguities remained,” Aviv wrote, since “people considered alive in one region of the country could be declared dead in another”—a situation that required a new committee to step in 14 years later. In 1981, the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, established in 1979 under Jimmy Carter, delivered “a uniform definition and theory of death. Its report, which was endorsed by the American Medical Association, stated that death is the moment when the body stops operating as an ‘integrated whole.’” This new understanding persisted for the next three decades, even though one of the ethicists on the commission admitted to Aviv that its “theory of death [wasn’t] supported by the scientific facts it cited.” In 2008 a new President’s Council on Bioethics adjusted the 1981 definition. Appointed by George W. Bush, this council abandoned the original “biological and philosophical justification” but “reaffirmed the validity of brain death,” offering a new explanation and theory: “the destruction of the brain was equivalent to death because it meant that a human being was no longer able to ‘engage in commerce with the surrounding world.’”
Aviv retells this tortuous history in the midst of an investigation into the life and “death” of Jahi McMath, an Oakland teen who was declared brain dead in 2013 but whose family, in a bitter battle with the State of California, kept her “alive” using a ventilator. The family’s actions opened a heated bioethics debate as they attempted to prove that even under life support, McMath showed inexplicable signs of life and engagement with her surroundings. How could one explain the fact that she menstruated after she had been declared dead? Or her apparent responses to stimuli like music or commands from her mother?
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The title of Aviv’s article was “What Does It Mean to Die?” She did not set out to answer this question. What she was interested in was how a story like McMath’s, and the conflict it incited, told an even more subterranean one: about how medicine and the very way we define “life” and “death” are subject to history and emotion—to considerations of bias, convenience, context, and the like.
Much of Aviv’s work as a staff writer at The New Yorker has circled around this contested domain: how so much of what we use to understand our existence is the product of a story born out of various contingencies and imperatives. Surveying the fields of medicine, mental health, and criminal justice, as well as the ways in which “people behave [and] the human mind works,” Aviv has visited prisons and hospitals, college campuses and homeless encampments, in the course of her reporting. Her subjects’ stories are told alongside troubling accounts of the institutions that are supposed to protect and govern their health and safety, and in the process define who they are and how they live in the world.
Strangers to Ourselves: Unsettled Minds and the Stories That Make Us, Aviv’s debut book, picks up on many of these themes. A look into the lives of psychiatric patients at odds with their health, their identities, and their treatments, it brings together the myriad tensions that have haunted Aviv’s work—the conflict between science and subjective experience, the battle between people and institutions, the middle ground between what is rational and what is inexplicable—to examine the “limits of psychiatric ways of understanding.” This investigation extends to Aviv herself, and she uses her own brushes with illness to explore the vexed role a journalist plays in the lives of their subjects. Strangers to Ourselves asks: Who shapes the story of someone’s illness? And who gets to tell this story to a wider public?
Aviv opens her book with a personal memory. In the first grade, she was hospitalized for an eating disorder that she developed in reaction to her parents’ divorce. Many of the older kids around her in the hospital had internalized their anorexia diagnosis as an integral part of their sense of self—the diagnosis, in a way, shaped the course of their lives and their identity. But Aviv, who was still quite young, realized that she “wasn’t bound to any particular story about the role of illness in my life.” Had her circumstances been different, though—if she’d had a less supportive family or had been just a little older and more self-conscious—she might have made a “career” of her illness. Instead, the experience left her with a sense that a diagnosis wasn’t always unyielding. “Mental illnesses are often seen as chronic and intractable forces that take over our lives,” she explains, but how much do “the stories we tell about them, especially in the beginning,…shape their course”? Diagnoses are supposed to help “evaluate the truth of people’s stories about what is happening to their minds” and thereby help liberate them, but in Aviv’s experience they can also shackle someone to a story that doesn’t accord with their life as they know it.
This insight informs the rest of her book. Presenting four case studies, à la Freud, of “subjects who are searching for the right scale of explanation…to understand a self in the world,” she tells an intimate history of psychiatric practice in the 20th and 21st centuries and of the contentious debates that influenced the treatment and understanding of illness. Wrestling with various mental health issues, her subjects were offered or came to believe different explanations of their conditions—“chemical, existential, cultural, economic, political”—even if none of these root causes were “mutually exclusive. Sometimes all of them [were] true.”
Aviv’s first case study tells the story of Ray Osheroff, an American nephrologist who was afflicted with anxiety and depression. He was successful and rich, but as he approached middle age, the “good life” he had built lost its luster: Food, sex, and his career—all things he had enjoyed and took pride in—felt dull. His wife and his business partner forced him to check into a psychiatric hospital after “he began to threaten suicide.” In 1979, when Ray was in his early 40s, he entered treatment at Chestnut Lodge, a famous institution that emphasized analysis and talk therapy and abjured pharmacological treatment plans and antidepressants, which were not yet commonly prescribed. The work done at Chestnut Lodge took the legacy of Freud and his inheritors to heart: Psychoanalysis was an arduous process, and there were no shortcuts to be found in the collaboration between patient and doctor as they endeavored to uncover the manifold origins of the patient’s illness.
Analysis, it turned out, was not fruitful for Ray. His difficult stint at Chestnut Lodge coincided with a divorce and a crumbling business, all of which added to an all-consuming fixation on his downward mobility. Yet he was told again and again in analysis that these external forces would not provide the explanation he wanted, that he had to work harder to uncover the parts of himself he did not yet understand. Unsatisfied with his treatment, Ray was moved to a new hospital by his parents and began a regimen of antidepressants that helped him for a time. In 1982, he sued Chestnut Lodge for “failing to make him better.” The hospital eventually agreed to a settlement, but the damage the case wrought was significant. His lawsuit was a battle, as a trade publication in the 1980s described it, “between two forms of knowledge”: one explanation for “mental distress” that was rooted in the “psychodynamic” and one rooted in the “biochemical.” When Chestnut Lodge settled, it conceded more than a failure to treat Ray successfully: “Prominent psychiatrists” treated the case as “psychoanalysis’s final reckoning.”
Ray’s story was representative of a larger shift in psychiatry that was taking place in the 1980s, one in which the personalized process of analysis was undone by the generalized and quantifiable success of a pill and the business-minded efficiency of a “managed care” approach. The previous model of psychiatric care was expensive, Aviv notes, and “to contain costs, insurance companies required doctors to submit treatment plans for review and show evidence that patients were making measurable progress. Long, elegant narratives of patients’ struggles were replaced by checklists of symptoms. Mental-health care had to be treated as a commodity, rather than as a collaboration.” Chestnut Lodge was forced to conform to this more pragmatic model and, in order to avoid lawsuits, began to prescribe medication for all its patients. The lawsuit’s damage to the hospital’s reputation, along with poor management and the rapid changes in its practice, helped send it into a decline. In 2001, Chestnut Lodge closed after declaring bankruptcy.
Estranged from his family, still struggling with mental health episodes, and unable to find a treatment that suited his needs, Ray discovered that both “the psychoanalytic and the neurobiological” models had failed him; he had “lost the framework on which to build anything.” In his final years, Aviv tells us, Ray attempted to write a memoir to determine the roots of his ailment: Was it an abusive father, the demands of his career, his unlikable personality, his ex-wives? But he could never quite arrive at a satisfying explanation. Without a convincing story to tell about what he suffered from and why, Ray struggled to find peace and make sense of his life.
More than two decades before Ray sued Chestnut Lodge, psychiatrists in India were beginning to question their own practices, especially those they had adopted from Western medicine. India, Aviv notes, had established a psychoanalytic society before France did, and the country’s medical profession, trained under the auspices of British colonial rule, had embraced the project of what was then called “mental hygiene.” But by the 1960s, doctors like N.C. Surya, the director of Bangalore’s All India Institute of Mental Health, had begun to turn against Western definitions of mental fitness: “We will end up,” he worried, “as ineffectual caricatures of Western psychiatric theory and practice, or reduce our living patients into a set of prestige-loaded foreign jargon.”
The subject of Aviv’s second case study found herself caught in this uncertain moment of change. Bapu, a woman from Chennai in South India, was fighting a diagnosis of schizophrenia that contradicted a story she believed to be more accurate: She was not sick but blessed with divine intuition by the god Krishna, and her role in life was not to be a wife and mother in her Brahmin family but to be married to her god. A local temple declared Bapu’s poetry divinely inspired, and she was seen as a spiritual healer later in life, but in her encounters with doctors, she was given only one story and one cure: electroconvulsive therapy, which was a standard treatment in India at the time. A patient like Bapu gives credence to William James’s observation that it is hard to distinguish between a schizophrenic break and a mystical experience, and it is possible that both characterizations were true in her case. Bapu “was not trying to arrive at an understanding of her own psyche,” Aviv writes. “She wanted to transcend personal boundaries, because she felt that she was finally grasping the folly and loneliness of her prior view of the world.” The very idea that she was sick “felt like an affront.”
Bapu’s diagnosis disoriented her, but her faith gave her purpose, direction, and a story that explained why she seemed different. Yet this belief came with its own baggage: She alienated many of those around her, especially her children, who came to understand their mother as unknowable and out-of-reach. Her son Karthik believed “her illness didn’t have one etiology, or one cure, or even some essence,” but rather was the product of something more painful and private: a family history marred by neglect. Psychiatry, Aviv observes, wasn’t “the only framework that has a kind of double-edged quality”—in Bapu’s case, her religious zeal isolated her as much as any diagnosis.
Aviv’s third case study moves from India in the 1960s to Minnesota in the 21st century. Like Ray and Bapu, Naomi, a Black woman from St. Paul, struggles with a diagnosis that fails to account for cultural and social forces. Earlier in life, she had attempted suicide by jumping off the Wabasha Street Bridge, killing one of her 14-month-old twin children. Born into poverty in Chicago in the late 1970s and subject to the full onslaught of the indignities that America inflicts on the poor and Black, Naomi had spent her childhood hungry, chronically unhoused, and in and out of school. The prejudice she faced as a young single mother in the early 2000s came with a material toll (when she tried to apply for welfare benefits, a caseworker told her, “You shouldn’t be living off the taxpayers’ money”). It also came with a steep psychological cost: Naomi grew paranoid. Her mental break at the bridge in St. Paul had been preceded by an earlier suicide attempt and a diagnosis of adjustment disorder and depression. A social worker wrote in Naomi’s case file that “she believes her depression is due to ‘all the hate in the world’ and being discouraged about discrimination.”
The institutions that Naomi shuttled into and out of throughout her life—not just hospitals but also the prison where she served a 16-year sentence—were “not designed to address the kind of ailments that arise from being marginalized or oppressed for generations,” Aviv writes. Naomi was acutely aware of her marginalization, and she desperately wanted to understand how the country’s past affected her present. To fill the gaps in her education, she read books about the history of Black America, and in some moments she indulged in delusions of grandeur in which she might help solve racism in this country. To make matters worse, when Naomi told her doctors that racism in the United States, both past and present, was part of what was making her depressed, her statements were ignored—something that Helena Hansen, a psychiatrist and anthropologist at UCLA, tells Aviv is so common for Black patients that it is “woven into the fabric of this country.” As Hansen puts it, if “Black women’s [historical] role is to do the work, to do the suffering,…why would we—the mainstream mental-health field—be chasing them down and asking, ‘Can I treat you for your sadness?’”
Though Naomi does not share the same diagnosis or circumstances as Ray or Bapu, she is trapped within the same set of contradictions: The diagnostic framework available to her and to her doctors could not account for her circumstances and her conception of self. By the end of this case study, Aviv returns to the difficulties posed by Ray’s legal battle and the shifts it precipitated: “In rejecting the authority of psychoanalysis, psychiatry had hoped to rid itself of the sway of culture and the fundamental subjectivity it implied. But the history of biological psychiatry has been marked by biases about gender and race just as psychoanalysis had been.” If both schools of thought are prone to flaws and offer theories of the mind that feel incomplete or ad hoc to some patients, what alternatives are there?
What’s striking about Aviv’s work is her willingness to implicate not just her audience but herself. This rigor becomes especially clear in the book’s final case study, which examines Laura, a white, Harvard-educated debutante who spends much of her life on a growing number of psychiatric medications (and who has been given a range of different diagnoses). A version of Laura’s story appeared in The New Yorker, and in Aviv’s new rendering of it, she tells the same painful story—of Laura’s many decades as a patient, from childhood to adulthood, and of her experiences with antidepressants, her efforts to wean herself off them, and the bunk science behind the “theory of chemical imbalance” that antidepressants are supposed to address.
But then Aviv departs from her original article and turns inward, asking the reader to interrogate the storyteller herself. Aviv recounts that she came across Laura through a blog Laura kept that recorded her experience with antidepressants and her own efforts to wean herself off them. In her 20s, when Aviv was socially anxious and plagued with doubts about her career, a friend suggested that she see a psychiatrist. The psychiatrist prescribed Lexapro, one of the many antidepressants Laura had struggled with. For Aviv, the medication was effective in relieving her anxiety: “My first six months on Lexapro were probably the best half year of my life,” she writes. But as this “six-month experiment” extended into a decade, Aviv “slowly and unsystematically” began to taper off from its use, “because I fear that if I don’t I will be on this drug for the rest of my life. I worry about unknown side effects later in life, but not enough to give up on the drug completely.”
Aviv not only inserts her own history into the story but also discloses it to Laura, who asks her, “Isn’t it possible it could actually be withdrawal, that maybe you need to go slower?” Aviv writes that she “found the question reductive, and a little insulting.” And she offers an even more critical analysis of Laura: “If medications are the central question—to take or not—then one has permission again to ignore the context, the kinds of social worlds that create and perpetuate disabilities. One explanation was still holding too much power.”
While personal admissions or brief pockets of memoir are hardly novel in narrative journalism, Aviv continues to keep herself in the frame in the final pages of the book. In the concluding chapter, she returns to the story of her eating disorder and recounts the life of one of the older kids in her ward, a teen named Hava who bears an eerie, almost familial resemblance to Aviv. Hava’s story disturbs her: “If I had been a little older, it’s possible that I would have had more social reinforcement and would have gone on to develop an anorexic ‘career.’ The difference between my illness and Hava’s may have simply been a few years. I am overwhelmed by the meagerness of this fact.” Comparing their different trajectories, Aviv considers not only her life and Hava’s but also her role as a journalist and the delicate task of chronicling experiences like Hava’s. “I feel tied to Hava,” she tells us, because of the way Hava’s story is in dialogue with her own, and because through the act of writing about her, she might help us see the world anew. She feels tied to Hava in the same way that she feels tied to “all the people I’ve written about here…. They described their psychological experiences with deep self-awareness, but they also needed others to confirm whether what they were feeling was real…. Their distress took a form that was created in dialogue with others, a process that altered the path of their suffering and their identities.”
Yet her role as a storyteller doesn’t give her any sense of authority or assurance; instead, it fills her with doubt. In casting her lot with her subjects, Aviv is acknowledging how journalism, like psychiatry and the stories people tell themselves, is just one effort among many to impose order on the mess of our lives.
In one of Aviv’s first articles, a 2010 feature for Harper’s on the process of diagnosing schizophrenia before its symptoms set in and drastically alter a person’s reality, she writes of a patient who “searched for a narrative that would explain why the world was being transformed.” Aviv knows there is no clear answer or single reason. And this, to me, is what makes her writing so vital: her predilection for uncertainty and ambiguity. Both medicine and journalism would benefit from more doubt instead of more authority—because the best way to tell a story, to change minds, is to begin with a question instead of an answer.
