Who Is Sick and Who Is Well?

I might be tempted to describe Terese Mailhot’s new memoir, Heart Berries, as “raw,” had she not warned against it. “The danger politically or artistically is that ...

I might be tempted to describe Terese Mailhot’s new memoir, Heart Berries, as “raw,” had she not warned against it. “The danger politically or artistically is that people won’t give me my craft,” Mailhot says in an interview with poet Joan Kane. “Because I’m an Indian woman someone might call my work raw and disregard the craft of making something appear raw.” Point taken: to see the book as “raw” is to mistake Mailhot’s searing minimalism for something simpler and more spontaneous. Porochista Khakpour’s memoir, Sick, raises a similar temptation, although her abundant, sometimes sloppy prose couldn’t be more different from Mailhot’s. But in each case the style is a feature, not a bug: a form appropriate to the recurrent, inchoate, and sometimes overwhelming nature of the author’s experiences of illness, alienation, and loss.

I might also be tempted to describe these titles as welcome additions to the illness memoir, a genre that includes such classics as Sylvia Plath’s The Bell Jar, Audre Lorde’s The Cancer Journals, Susanna Kaysen’s Girl, Interrupted, Sarah Manguso’s The Two Kinds of Decay, and Lucy Grealy’s Autobiography of a Face. Given that, with the exception of Lorde, all of these authors are white, the appearance of younger women of color like Mailhot and Khakpour is certainly worth noting. But Mailhot makes me cautious about claiming the value of these new works as primarily additive. They bring much-needed diversity to the illness narrative, but Heart Berries and Sick are also innovative and aesthetically accomplished works in their own right, as is a third new book, Leslie Jamison’s The Recovering: Intoxication and Its Aftermath. All three are marked by very different but equally vivid literary voices, using formal strategies of withholding, exaggeration, and repetition to potent effect; and by a decisive refusal to engage with the conventions of illness narrative, resisting familiar signposts of diagnosis, redemption, and recovery.

From its quaint title to its petite tangle of mixed berries on the cover and the smudged hearts that top each chapter title, Mailhot’s memoir is misleadingly packaged. Beneath its deceptively minimalist surface is a harrowing story of illness, loss, and abuse, as well as the restorative power of writing one’s story and having it recognized by others. Mailhot was raised on the Seabird Island Indian Reservation in British Columbia, with a doting grandmother, neglectful mother, and abusive alcoholic father. Shunted into foster care, she married the wrong person at age 17, and her son was removed in an ugly custody battle. Affairs with numerous no-good men ensued. While pregnant with her second child and distraught over a failed relationship with her writing teacher, Casey Gray, Mailhot checked herself into a mental institution, where she began to write the fragments that would become Heart Berries.

Even as she is devastated by illness and deprivation, Mailhot’s suffering is also generative, because it marks her emergence as a writer.

If Mailhot’s book is an illness memoir, it lacks most elements of the genre. In sociologist Arthur Frank’s influential schema, the illness narrative typically describes a descent from the ordered and predictable world of health into the harrowing chaos of illness.1 While the immediate experience of suffering can yield only fractured incoherence, in recovery the narrator seeks to make restitution or gain wisdom by reflecting on the lessons learned from her ordeal. Instead, Mailhot’s story is fragmented and recursive. It begins in chaos and largely remains there. There is no fall from health into sickness, and the possibility of healing is remote at best. Heart Berries is constructed as a series of letters to Gray (“you had a hard-on for my oratory”), who eventually became her second husband. Chapters read like the stand-alone pieces they once were; it is hard to get a handle on time and place, let alone the sequence of events.

And yet, the book’s form seems suited to Mailhot’s story. As part of her therapy at the Behavioral Health Center, where she had herself admitted for suicidal depression, she is told to document her illness, a treatment intended to “wind the reader back together, asking them to find better ways to cope.” She demurs. “I don’t like neat narratives or formulas.” She resists a straightforward path to recovery based on overcoming her symptoms. When doctors advocate letting go, Mailhot claims her people are determined to “carry pain until we can reconcile with it through ceremony”; what they describe as self-esteem, she dismisses as a “white invention to further separate one person from another.” When they diagnose PTSD, an eating disorder, and bipolar II disorder, she offers the cheeky rejoinder, “It was polarizing to be told there was a diagnosis for the behaviors I felt justified in having”; and when they think she is well enough to be released, she feels she is “unraveling.”

Some of these refusals seem tongue-in-cheek, yet they also represent more serious criticism of the extent to which diagnoses and treatment for mental health are culturally specific, a call for what some scholars of Health Humanities have called cultural or structural competency. Drugs and therapy can only do so much, providing a veneer of functionality (“Because of my medication, I didn’t cry over breakfast or minor transgressions”) without addressing the underlying pathology of violence, sexual abuse, extreme poverty, and racism at the root of Mailhot’s bodily dysfunction.


Immigrants and Illness

By Kairos G. Llobrera

Even as she is devastated by illness and deprivation, Mailhot’s suffering is also generative, because it marks her emergence as a writer. Despite the discouragement of professors who say her writing “lack[s] form and technique,” she applies to and is offered a scholarship by the MFA program at The Institute of American Indian Arts. “The program was designed with a renaissance in mind,” she writes, quoting author Sherman Alexie, who gives his imprimatur with a rave introduction to Heart Berries. The allusion is to the title of Kenneth Lincoln’s 1983 book, Native American Renaissance, which described a literary flourishing beginning in the 1960s that produced the work of such authors as N. Scott Momaday, Leslie Marmon Silko, Gerald Vizenor, Louise Erdrich, and Paula Gunn Allen. Whereas this prior renaissance established the vitality and quality of Native American writing, subsequent writers like Alexie, Joy Harjo, Louis Owens, and David Treur faced the challenge of building on its legacy.

Mailhot represents something like a third wave, weaving reflection on problems of identity and representation into the narrative itself. How to portray those aspects of her experience that threaten to fall into stereotype: alcoholic father, broken family, abusive relationships, her own drinking and brokenness? Yes, her father did some awful things, but “as an Indian woman, I resist the urge to bleed out on a page, to impart the story of my drunken father.” Yes, she drinks too much. But “I hide my empties because I don’t want to be a drunk Indian. I do get drunk, and I am Indian, but not both.” “I feel like a squaw,” Mailhot asserts. “The type white people imagine.” Her solution is not to turn away from these degrading types but to deliberate, sometimes claiming and renouncing them on the same page. Occasionally she veers into a more romantic view of her duty and her powers as a writer, but she succeeds at retelling familiar stories in a way that feels fresh and necessary.

Porochista Khakpour’s bluntly titled Sick takes a similarly broad view of physical and mental illness as the outgrowth of pathological experiences of exile, poverty, racism, and alienation. The exact nature of Khakpour’s sickness remains deliberately ambiguous. She has a CDC-level diagnosis of advanced Lyme disease, which causes chronic and debilitating symptoms that for many years were met with disbelief, misdiagnosis, and ineffective treatment.

But Khakpour’s subject is not just her struggle with Lyme but also a prior, and more existential, dis-ease. “I have never been comfortable in my own body,” she writes in her opening sentence. “Rather, I’ve felt my whole life that I was born in the wrong body.” Lifelong bodily alienation is exacerbated by the political turmoil that forced her family into exile from Iran, the poverty and isolation of her youth in suburban Los Angeles, and her falling in with a rebellious crowd at Sarah Lawrence College, where it was cool to look sick and take drugs, and nobody saw doctors, ever.

The inchoate quality of Khakpour’s illness blurs the line between sickness and health. Many illness and disability memoirs tell an origin story that identifies the precise moment of crossing over into what Susan Sontag calls the “kingdom of the sick.”2 Sick belongs to a growing subgenre of narratives about chronic illness (almost all written by women, including Manguso, Susanne Antonetta, Lauren Slater, and Allie Brosh) that is misdiagnosed, mistreated, and dismissed as psychosomatic. Khakpour resists origins by giving too many possible beginnings: repeated occasions when the tiny yet momentous insect bite that led to her infection might have occurred; missed opportunities for doctors to identify her disease; and situations where she could have been more attentive to her own health.

Khakpour’s memoir is haunted by the shadow of what she calls The Book I Sold. Having published a successful first novel, Khakpour got a contract for a very different book than the one she eventually wrote: “a story of triumph, of how a woman dove into the depths of addiction and illness and got well. She got herself better. She made it. The Book I Sold might even imply that you can do it too. Or anyone can. Who knows. The Book I Sold was never written past a bare-bones proposal.”

Khakpour details the massive financial cost of getting healthy. Health is not a result of virtue or grit, but rather a privilege of the wealthy and the well insured.

In discarding this Book, a conventional narrative of descent into illness followed by triumphant recovery, Khakpour also rejects the notion that her illness has such a neat trajectory, along with the idea that recovery can be attributed to individual grit and determination. Instead, Sick is a far more interesting narrative of chronic illness and of how health is determined by access to insurance, medical care, and social support.

The book Khakpour actually wrote has a lot to say about the racial and gender dimensions of illness. She joins a long line of women whose illnesses have been written off as hysteria. Whereas some patients compensate by becoming dutiful biocitizens with deep knowledge of their own symptoms, treatment, and current scientific research, Khakpour often leans in to the more traditional sick role. She has an unfortunate tendency to turn to men—the kind attracted to women who are sick, vulnerable, and mysterious—as an antidote to her suffering. Repeatedly her bouts of illness are followed by recoveries involving the discovery of love and intimacy. And repeatedly these men let her down as their own pathologies surface or they prove unable to deal with her sickness at its most extreme.

Khakpour’s experiences are often racialized: hired at a college in rural Pennsylvania, she is perceived as exotic; after a serious car accident, she tries to be appealing after the tow truck driver confesses his dislike of “Arabs”; when she collapses during a conference, she begs the paramedics not to take her “somewhere where they are racists.” Sometimes flirting with and sometimes rejecting a romanticized illness aesthetic, she remarks on the irony of being whitened by her disease: “I’m a brown Middle Eastern woman, though every time illness turns me white—thin and pale to the point where everyone congratulates me at my sickest as I transform to a white woman in appearance.”

In contrast to The Book I Sold, which attributes recovery to strength and determination, the book Khakpour wrote details the massive financial cost of getting healthy. Health is not a result of virtue or grit, but rather a privilege of the wealthy and the well insured. Khakpour details the health benefits she gains from being employed, insured, or the beneficiary of others’ generosity, and the health consequences of being poor and unable to pay for better doctors or expensive treatments. “To this day what mainly separates me from healing is financial considerations,” she writes, scathingly. “Could there have been another life that would have brought with it the opportunity of a more complete wellness?”

It is likely that The Book I Sold would have been a tighter and more carefully crafted narrative. Pace Mailhot,“raw” is the word I would use to describe the book Khakpour actually wrote, which can feel redundant and overwritten. Some sentences seem to need some tough editorial love. For example:

When I got friends to take away the bee farm a friend bought for me, because another Lyme friend suggested I sting myself in the absence of my bee venom guru, and it was a disaster, my fingers unable to pinch the bees, the old honeybees dying in vain, their buzzing insanity-inducing in those endless insomniac nights, my soul feeling only all the more cursed with the psychic burden.

Sometimes wading through the excess left me wishing that Khakpour or her editor had taken a firmer hand. But I also find myself asking if this isn’t the right style to describe the frustrating, redundant, and burdensome experience of illness.

Mailhot cautions against dismissing women’s stories of suffering because they sound too familiar: “It’s almost funny because, yeah—there is nothing new about what they do to us. We can write about it in new ways, but what value are we placing on newness? Familiarity is boring, but these fucking people—they keep hurting us in the same ways.” How the familiar can be restorative and necessary is Leslie Jamison’s most interesting theme. She frames The Recovering: Intoxication and Its Aftermath as a deliberate turn away from the high drama of addiction, toward the mundane, repetitive, and clichéd story of recovery. Hers is not a sensational crash-and-burn tale but rather the “small and curdled” life of a functional alcoholic.

Jamison’s bold premise is to write from the humility and acceptance she has learned from AA, rejecting the modernist imperative to make something new and resisting the tendency to equate sameness with tedium. But spread over a massive 500+ pages, such professed humility starts to feel disingenuous. Despite blackouts, relapses, and occasional social embarrassments, Jamison is remarkably successful. Her journey along a coveted path of professional literary success (BA from Harvard, MFA from Iowa Writers’ Workshop, PhD from Yale, first book contract) and nearly unbroken sequence of romantic relationships is unhindered by her addiction. Jamison’s engaging, well-crafted style reflects the sheen of her credentials. “Raw” is the last word I would use to describe it.

Jamison contextualizes her life story with the social history of reform movements. She is the first to admit that she is the privileged beneficiary of programs marked by the race and class prejudices that brand white addicts as victims and poor people of color as dangerous criminals. Jamison also bulks out her narrative with a literary history of alcoholism and recovery. Having returned to Yale to workshop her dissertation prospectus, she writes caustically of the professor who asks how she plans to make the redundant tropes of recovery narrative into an interesting topic.

This seems like a reasonable question (let it be known that this reviewer is a professor who has attended countless prospectus workshops), but Jamison dismisses it as “standard academic protocol.” She then plows ahead. Little harm is done by Jamison’s determination to write on her own terms. But long stretches of The Recovering, on the lives of addict writers like Raymond Carver, John Cheever, John Berryman, Malcolm Lowry, William Burroughs, David Foster Wallace, Marguerite Duras, and Jean Rhys feel liberally and tediously recycled from the dissertation.


Memoir 2.0; or, Confession Gone Wild

By Christopher Grobe

An important step in AA’s program is an examination of past errors. Among the most egregious (to this reviewer) is Jamison’s treatment of her students. Like many graduate students, she has the opportunity to lead a discussion section. When they read F. Scott Fitzgerald’s story “Babylon Revisited,” she asks the students if there is any resolution for its alcoholic protagonist. “I know this wasn’t how we were supposed to teach, acting as if Charlie was a real guy—someone I’d met at a meeting, say—,” she writes. “But I was seeking company in pretty much every story I encountered. So I asked my students if they thought Charlie would ever manage to stay sober, and kept calling on people until finally someone said yes, he thought he would.” When hired as an adjunct at another local college, Jamison confesses to marking up student writing “with my own agendas.” At the end of the semester, she asks the class to name their favorite reading, telling them there is no right answer: “But I was lying. There was a right answer. Their favorite story was supposed to be my favorite story.”

In case there were any hard feelings, she brought donuts to class every week. Jamison can check off the box that requires her to examine past errors. In confessing, has she also completed the next step requiring her to make amends to those she has harmed? Only her students can tell.


This article was commissioned by Nicholas Dames. icon

  1. Arthur Frank, “Reclaiming an Orphan Genre: The First Person Narrative of Illness,” Literature and Medicine, vol. 13, no. 1 (Spring 1994).
  2. Susan Sontag, Illness as Metaphor (Farrar, Straus & Giroux, 1978), p. 3.
Featured image: Axial MRI scans of a person with multiple sclerosis. Image by NIH Image Gallery / Flickr