Different People, Different Stories

The Ceiling Outside: The Science and Experience of the Disrupted Mind by Noga Arikha; Basic Books, 304 pp., $29

Neuropsychiatry, perhaps more than any other medical field, has to contend with the complexities of individual experience even as it searches for general explanations. Medical research is meant to identify categories of disorder that allow clinicians to look past the idiosyncratic aspects of a patient’s illness to the underlying mechanisms of the disease. But in the neuropsychiatric clinic, biographical factors—such as trauma, family dynamics, or social determinants of health—are often stubbornly tangled up with these mechanisms. Only in quite rare cases, like that of the lone gene that causes Huntington’s disease or the spirochete that causes syphilis, is a single grim biological fact to blame for a mental pathology. Even so, disciplines like neurology and psychiatry require taxonomies of disease.

The 18th-century naturalist Charles Bonnet thought that for intelligences higher than ours—presumably God and his angels—classification was unnecessary, since each living thing on earth could be known on its own terms. A Talmudic-era commentary on Genesis goes further, suggesting that each blade of grass is supervised by a celestial force—a mazal—urging it to grow. But for creatures like us, the bewildering complexity and opacity of others means that we must fall back on general knowledge in order to understand much at all.

In her new book, philosopher and historian Noga Arikha examines the tensions that result when humans categorize one another in an attempt to cure. “The doctor’s job is to treat the one patient,” she writes, “though in order to do so, he or she must also square the unique individual with the generalizable case—but your story will always differ from mine.”

The Ceiling Outside is ostensibly a work of ethnography, its chapters centered on various patients Arikha observed while attending rounds in a neuropsychiatry unit at the Salpêtrière in Paris. But the book succumbs, wonderfully, to the temptations of another genre—memoir—as Arikha’s preoccupation with her mother’s dementia complicates her clinical gaze. The result is a gripping confluence of the personal and the scholarly that is able to offer up an unusually holistic exploration of the way selves are lost, and found, under the auspices of modern medicine. The book’s structure also allows Arikha to reflect on the painful challenge of seeing a loved one as one among many, once a diagnosis has been made. We tend to find relief in generalizable explanations of illness, which can help us make choices regarding treatment. But what it means to care for someone is also to be a sort of mazal: Arikha describes herself in the same sentence as “the impartial observer” and “the partial daughter.” It is hard to hover over loved ones, urging them to grow, while comprehending them less and less.

Arikha has a gift for making scientific technicalities digestible by baking them into irresistible narratives and wise reflections. Her case studies range from a woman recovering from decade-long amnesia, which leaves her astonished at the life choices she finds herself to have made, to a man plagued by an overwhelming and guilt-inducing religious fervor. Arikha reports on how each case appears to the disparate experts in the unit, and their diverse analyses become avenues for her own contributions as a self-described “science humanist.” Despite her light hand, a thicket of footnotes reminds the reader that Arikha is a formidable scholar of medicine. As an impartial observer, she regards the history of the human sciences as inclusive, across both time and place, and it is refreshing to hear about traditional philosophical topics such as the mind-body problem or the distinction between the normal and the pathological from non-Western and premodern perspectives. As a partial daughter, Arikha is thoughtful about sharing the small tokens medicine can provide to make psychopathology more comprehensible to those who live with or alongside it. For example, when my grandfather was suffering from Alzheimer’s, I observed how his facility with languages was stripped down, layer by layer, so for a time he could sing only Spanish Civil War songs, or curse only in Russian, or ultimately (like Arikha’s mother) truly light up only at the sound of Yiddish. This phenomenon has a name, Ribot’s Law, and I am glad to know all about it.

Arikha’s overarching observation is that selves are never steady state—their existence is as evanescent as a river’s eddies. One of her book’s epigraphs comes from Thomas Mann, who describes our lives as having “no inherent ability to exist,” only balancing “with sweet, painful precariousness on one point of existence in the midst of this feverish, interwoven process of decay and repair.” Although her portrait of her mother is unflaggingly adoring, Arikha describes the challenges of loving someone whose self is changing at a different pace than everyone else’s: “the only way for us to remain in our place is not to follow her, to ignore, to let go, let her go, let it be, let it unfold, and occasionally take notes.” Arikha asserts that cognitive and emotional disturbances are relational, having to do not only with disturbances in our ability to track reality but with our ability to “be with others.” Susan Sontag described the boundary between the two kingdoms of health and illness as strictly policed, and Arikha is especially concerned with the potential of love to get through border control. Love is not contraband, but it must fill out forms and endure quarantines. “We can only be good daughters,” Arikha writes of herself and her sister, “by not being the daughters we once were.” In her generous (if aspirational) portrait of neuropsychiatric care, she characterizes clinical processes of investigation and diagnosis as similarly loving efforts to connect with a troubled self. The disconnect between Arikha and her mother, like the disconnect between clinician and patient, is inevitable given their different experiences of time. She quotes a psychiatrist who acknowledges to a patient that “memory is control.”

That illness, especially chronic illness, can bring into being a new metaphysics of time is a familiar idea in disability studies: Alison Kafer, who teaches at the University of Texas, describes “crip time” as a “flex time not just expanded but exploded,” requiring “re-imagining … of what can and should happen.” Arikha’s explanations of how time is twisted and transformed by phenomena like amnesia, dementia, narcolepsy, and compulsion contribute to this taxonomy, and like scholars of disability, she is quick to point out that there is no place in this taxonomy for “normal” time: your story will always differ from mine.

The Ceiling Outside will be of special interest to those who believe in the ethical imperative of accommodating this kind of difference—something more urgent than ever, as post–acute coronavirus syndrome, otherwise known as “long Covid,” quietly extends its global reach. With its uncanny attacks on our nerves and psyches and its absurdist knack for making everything feel like sand or taste like diesel fuel, Covid-19 is less “like the flu” and more like some of the rare conditions Arikha describes. Those who get it may join the citizenry of that other kingdom that medicine would like to help but can’t, which somehow leads to suspicion in others—a form of exclusion already familiar to those with conditions like Lyme disease or chronic fatigue syndrome. Arikha emphasizes that we are—all of us—one turn in the eddy away from being such a case, living as we do “on a sliding scale of being.” We must not look away from that which we cannot categorize. “We are here to make sense of the world, and of each other,” she writes, “but things do not always make sense, and everyone’s capacities fluctuate, from day to day, even hour to hour.” Arikha’s portrait of cognitive and emotional pathology as relational and relative—as ultimately having to do with how we all share time—could not be timelier. The helplessness of scientific experts faced with even as everyday a phenomenon as dementia makes clear that medicine, by itself, is not enough for us to survive a plague. We also need that expertise, characteristic of intelligences such as ours, in loving others even when we cannot comprehend them.