Zauner was 25 when her mother was diagnosed with an aggressive, late-stage, mid-life cancer. Zauner was a rebellious child, resentful of Umma’s version of tough love. Growing up the lone Asian student in her Oregon community, she felt both othered at school and an outsider among her mother’s Seoul relatives when she visited them each summer. Just as she was beginning to appreciate her Korean heritage and understand her mother’s love, she learned about Umma’s diagnosis.   

The first half of the memoir exuberantly brings to life scenes from Zauner’s childhood and her brief post-college years as a musician in New York City. Surprisingly, without hesitation, she paused her makeshift career and flew west to care intensively for her mother. Attempting to heroically save Umma, Zauner zealously learned to prepare the native foods they shared. “I would radiate joy and positivity,” Zauner pledged. “I would learn to cook for her—all the things she loved to eat, and I would single-handedly keep her from withering away” (69). Her optimistic culinary efforts produce a poetry of exacting descriptions of the flavors and textures and preparation of those foods. It’s grimly ironic that the chemotherapy her mother endured wiped out her ability to taste or digest Zauner’s loving offerings of health.  

The second half turns from living with Umma to living without her. Wishing to sustain her bond with her mother as Zauner grieved, she continued preparing her Korean family’s recipes. Walking down H Mart’s redolent aisles released “waves” of sorrow that mark the enduring ebb and flow of her grief. Unsuccessful with conventional therapy, she found cooking the best form of self-care: “Every dish I cooked exhumed a memory. Every scent and taste brought me back for a moment to an unravaged home. Knife-cut noodles in chicken broth took me back to lunch at Myeong Dong Gyoja . . . The kalguksu so dense from the rich beef stock and starchy noodles it was nearly gelatinous. My mother ordering more and more refills of their famously garlic-heavy kimchi” (212-213). An image of abundance in the midst of loss.

Zauner’s detailed descriptions of cooking and consuming invite readers to her table, reminding us—as previous celebrated writers have—of the power of the senses to evoke memory and the power of food to strengthen human bonds. Food also powers Zauner’s self-understanding and the unexpected transformational love for her mother: “The culture we shared was active, effervescent in my gut and in my genes, and I had to seize it, foster it so it did not die in me . . . If I could not be with my mother, I would be her” (223-224).  

Zauner’s writing is itself active and effervescent. Through her grief, she holds a steady, unflinching gaze on cancer and death. As she writes candidly about her family, Zauner is critically reflective about her own life. Her writerly achievement is the immediacy of her felt experiences, her grief and her joys made palpable. “Let me feel this,” she courageously writes, dismissing her Korean family’s admonitions to withhold tears (202). An unforgettable image of the process of loving transformation that Zauner experienced unfolds in her description of making the Korean staple kimchee. It is a slow, exacting process of fermenting cabbage that at first strikes her as “controlled death” because “[l]eft alone, a head of cabbage molds and decomposes. It becomes rotten, inedible. But when brined and stored, the course of its decay is altered. Sugars are broken down to produce lactic acid, which protects it from spoiling. Carbon dioxide is released and the brine acidifies. It ages. Its color and texture transmute. It exists in time and transforms. So it is not quite controlled death, because it enjoys a new life altogether” (223). 

As if miraculously, a few years after Umma died, Zauner’s itinerant music career took on a new life. The band she has fronted, Japanese Breakfast, recorded the album Psychopop with a song she wrote about her mother, “In Heaven.” Then they toured the U.S. and South Korea. Although her mother was skeptical about a musical career, Zauner imagined that Umma would be “glad that I had finally found a place where I belonged” (233). 

Crying in H Mart: A Memoir
Michelle Zauner

Publisher Alfred A Knopf
Place Published New York
Edition 2021
Page Count 239

Web photo by Portuguese Gravit

Five years into writing about her mother’s slow decline from a respiratory illness, Joanne Jacobson was diagnosed with a rare, life-threatening blood disease. That discovery dissolved the illusion that she and her mother had separate fates. “How could I continue writing about my mother as though I were observing her from outside the circle of Illness?” Jacobson asks (27). She can’t. And Every Last Breath becomes, as its subtitle discloses, “A Memoir of Two Illnesses.” Doubling its concern, Jacobson’s memoir in essays becomes a richer, more urgent, and ironic revision of her original project.  

With writerly attentiveness, perceptive intelligence, and some impatience, the four opening essays witness the negotiations that Florence Jacobson makes with her body, her environment, and her psyche. From a distanced perspective, Jacobson wonders at her mother’s courage and stubborn animal will to go on. Her mother’s slow pace and reluctance to let go—of her possessions, her habits, her life—initially frustrate and puzzle Jacobson. She even expresses impatience with the constant sound of her mother’s oxygen pump filling the apartment, the inconvenient bulk of the oxygen canister, the tangles of tubing connecting the machine with her mother’s nostrils.  

As Jacobson’s diagnosis closes the distance she perceived between herself and her mother, it ignites the memoir’s transformative insight. It’s first articulated at the end of the essay titled “Mirror Writing” and it sustains the rest of the memoir. Realizing that her mother might outlive her, Jacobson writes: “. . . I can no longer pretend that the ragged approach of death is likely to be smoothed by nature’s grace, or by the natural order. So long as I believed I was writing about my mother, I was able to hold mortality at a distance . . . Now in the mirror of my mother’s aging face I see myself” (29). In “Dead Reckoning,” when Jacobson learns that her blood is starved for oxygen, she hears her “own lungs fall into the thrumming motor’s pulse” of her mother’s respirator. Revising her response to the technology, she writes that it is “the sound of death being pushed mechanically away that is audible to me now—steadily asserting its nearness . . .” (63-4). Jacobson’s descriptions of her hospitalizations and treatments (“Written in Blood,” “If My Disease Were an Animal”) sharply observe her new understanding of herself and the “call to the imagination” that her experience issues (59). Jacobson’s elegant and vulnerable rendering of her efforts to survive pain, uncertainty, and terrifying treatments register her courage and will to go on.  

The final essays bring together the shared destinies of mother and daughter. Jacobson thinks of their relationship as “invisibly entwined, cellular,” as she recalls that mothers’ bodies can absorb the fetuses’ cells (88). In “Book of Names,” Jacobson’s closing essay, she and her mother recite the names in Florence’s heavily edited address book, tracking the alterations in the lives she’s shared. The recitation invokes the lists in Genesis. Begotten. Gone.  

Every Last Breath should be read. Its profound and startling reflections on mortality are lyrical, fierce, and deeply felt. At times readers take extravagantly metaphorical flights of the imagination. At times we’re immersed in revelatory scientific facts about the natural world and our human biology. This slender book melts other boundaries as well: between caregiver and patient, mother and daughter, self and other, personal and universal. It simultaneously challenges literary classifications, blending poetry, essay, and memoir. Read separately or together—either way can be satisfying—Jacobson’s brilliant essays refuse to let us ignore our shared vulnerability or the unpredictability of living in a body, as Jacobson once naively thought she could. 

Every Last Breath–A Memoir of Two Illnesses
Joanne Jacobson 
The University of Utah Press, 2020; 114 pages 
https://uofupress.com/books/every-last-breath/

A previous version of this review was published in the NYU Literature, Arts, and Medicine Database. 
Web image created by Medhum.org

Before modern medicine, superstition mediated pregnancy and childbirth. Once, divine wrath or distressing mental images risked what was called a monstrous birth. To reduce risk today, pregnant women consult prophetic prenatal technologies and the ceaseless cacophony of digital media. Twice pregnant, New York Times pop culture and internet reporter Amanda Hess found herself both drawn to and repelled by media advice and the collection of data enticed by apps or insisted on during clinical encounters.  

Her book Second Life: Having a Child in the Digital Age—part wry memoir, part savvy investigative reporting—asks whether current technologies deliver a better, if not perfect, baby or the maternal well-being they augur. She, even more significantly, worries about the consequences, personal, relational, and ethical, of pursuing perfection.  

Hess couldn’t resist interacting with chatty, advice-giving apps. One first tracks her fertility and then, in weekly installments, shows her what a developing “creepily realistic CGI fetus” looks like. (Another app likens fetal development to the temptations on Parisian bakery shelves. A macaron, for instance.) Visual creepiness aside, Hess has unsettling thoughts about surrendering intimate information about her body to unknown recipients. She discovers that a popular app she regularly consults was developed by two brothers in Belarus backed by venture capitalists. Its surveillance exposed her to endless marketing schemes that hardly considered anyone’s well-being or financial resources. Curious about the history of fertility tracking before and after apps, Hess discovers a throughline of troubling eugenic ideologies. It travels through the advice of a popular pregnancy influencer. 

Deep into Hess’s first pregnancy, a “concerning” routine ultrasound detected what could be Beckwith-Wiedemann syndrome (BWS), a rare genetic condition. Its possibility sent Hess anxiously scanning the internet, against her doctor’s advice, for medical information and possible maternal causes. Was it the wine? The Ativan? A fever? Her age? Unspecified guilt followed. But neither the internet, genetic testing, nor her doctor could reassure her about a cause or the possible extent of the condition. The internet images she sought of children with the full range of BWS anomalies hardly quelled her anxieties. Only after her son’s birth was a form of BWS confirmed.  

Hess sympathizes with the wish to deliver a healthy baby and the temptation to seek any available service or technology to that end. After all, that’s what she wanted. However, the prospect of birthing a child with an anomalous body leads her to question the meaning of the ubiquitous parental qualification: “As long as the baby is healthy.” Healthy, she finds, translates to normal. Anticipating a not-normal child makes her feel protective of her son even before his birth. After it, she deflects thoughtless remarks from strangers about his enlarged tongue protruding from his lips. (Corrective surgery later enables less compromised breathing and speech.) She and her husband care for and about him for the distinct person he is. About her initial anxieties about his body, Hess writes, “My nightmare . . . ended when I met my son.”  

Hess’s standout chapter “Growth” recounts her evolving response to her son’s imperfections and her efforts to manage others’ IRL and internet responses to him—a task she finds essential to parenting him. I hope this chapter is widely read, certainly by future parents, but also by clinicians, genetic counselors, and those who teach them.  

Some accounts of caring for an imperfect child cast the child and the parental relationship as special. Some view chronic illness or disability as a familial burden. Hess does neither. Instead, she folds caring for her son into the course of her life and her family’s. In that way, she continues a contribution of Michael Berube’s complicated 1996 Life as We Know It, however, adding a millennial’s navigations of current medical technologies and media static. Hess further envisions a world that participates in the care of all children, one that refuses to blame or isolate families with less-than-perfect children. That world would reduce parental anxieties more than screening for concerning “problems.” Philosopher of care and mother of a profoundly disabled child, Eva Kittay, would agree. 

Some readers might say that Amanda Hess’s financial and other resources make her generous perspective possible. She agrees. She’s half of a two-parent family. As journalists, she and her husband have more flexible schedules than countless other parents. But in the world Hess encourages, parental status would be irrelevant to their child’s care. 

Without being prescriptive, Hess’s lively, self-reflective story provokes readers to think twice about rejecting imperfect children—anyone’s—and to notice the eugenic logic underwriting rejection. Her book tests the claim that ever-evolving technologies enhance maternal well-being, empower parental choice, and guarantee healthy babies. (Ironically, a researcher Hess encountered reported on increasing evidence of BWS in IVF conceptions, many intended to screen for anomalies.) In fact, far more children are permanently harmed during their lives than are born ill or disabled. Rather than relying on the billion-dollar industry of prenatal testing, aren’t we better off, Hess asks, accepting and taking better care of all children however they’re born? 

Second Life: Having a Child in the Digital Age
Amanda Hess  
Doubleday, 2025, 272 pages 

Before the late 1960s, when someone had a medical emergency, their best hope was a “swoop and scoop” rescue. A police van or a hearse—if one appeared at all—would load up and drive the patient, unattended, unrestrained, to a hospital emergency department. On arrival, there was often little that could be done. In American Sirens, journalist Kevin Hazzard, himself a paramedic, reveals the story of the first fully trained paramedics who practiced life-saving medicine beyond hospital walls. Celebrated in Hazzard’s account are the Black men from the segregated Hill District of Pittsburgh that the visionary physician Peter Safar, inventor of CPR, recruited and trained. 

Safar’s 1967 project to train and hire unemployed men from a community organization known as Freedom House was initially met with derision. How, his colleagues asked, could he trust people with a high school education, or less, to endure intensive medical training and perform it flawlessly? The training included fifty instruction hours in anatomy and physiology, more time learning CPR, advanced first aid, defensive driving, and medical ethics. Trainees also learned how to treat cardiac conditions, diabetic emergencies, bleeds, spinal and pelvic fractures, and overdoses. Most controversially, they were taught how to intubate patients. While only 24 participants in Safar’s first class of 44 succeeded, those who did provided evidence that paramedics were fully capable of saving lives. According to Hazzard, Safar’s emergency response project became the national standard. 

Hazzard folds the project’s success into the stories of the men—all men at first—who took pride in contributing their life-saving skills to their community. Many of their lives changed direction in the process. Primary among them was John Moon, whose biography and dedication engagingly move the narrative forward. However, Hazzard also recounts how the project’s success met opposition from White residents wary of Black paramedics, a city government reluctant to fund them, and medically untrained police who felt upstaged. The final chapters recount the unravelling of the Freedom House first responders by the mayor of Pittsburgh. By 1975, political forces defunded the Freedom House crews and created a city-sponsored EMS run by the police. Only a few of the Freedom House paramedics chose to join or remain on the city ambulances. Most notable was John Moon, who rose in the ranks, recruited paramedics from low-income neighborhoods, and continues to keep the legacy of Freedom House alive. 

In addition to introducing readers to the Freedom House crews, Hazzard also suspensefully recounts the vicissitudes of several determined physicians who defended their project against professional and political resistance. He briefly pauses that narrative to sketch the fascinating history of emergency care through the last two millennia: from early Christian religious orders through nineteenth-century cities and twentieth-century European and American wars. Hazzard skillfully constructs his coherent narrative of Freedom House from a patchwork of source materials: principally, extensive interviews with John Moon; interviews with Freedom House founder Philip Hallen; the records of Freedom House; contemporaneous news reports; histories of medicine; medical journals; the memoir of Peter Safar; and the meticulous diaries and papers of his colleague, Nancy L. Caroline. She also trained the paramedics, rode ambulances with them, and wrote the first and still standard textbook, National Training Course, Emergency Medical Technician, Paramedic: Course Guide. 

Overall, American Sirens offers a detailed and comprehensive account of a little-known moment in the history of medicine that’s had enduring consequences. By reviving that story, Kevin Hazzard begins to rectify the racial injustice that the first paramedics experienced in their lives and again when their achievements were nearly forgotten. 

Readers interested in meeting John Moon and others central to the Freedom House story, can view the excellent PBS documentary from WQED Pittsburgh, Freedom House Ambulance: The First Responders (first aired January 2023). In a little less than 30 minutes, it underscores the political and economic conditions in which Freedom House was founded to serve the severely neglected Hill community. Interviewed residents recall incidents when police refused, on flimsy grounds, to transport community residents to hospitals. Most of all, the documentary confirms the pride, dedication, and dignity of the first of the first responders. Their story deserves to be known: https://www.pbs.org/video/freedom-house-ambulance-the-first-responders-nl3kcq/ 

Fans of the series The Pitt might remember a patient in Episode 8 who was one of the Freedom House paramedics. 

American Sirens: The Incredible Story of the Black Men Who Became America’s First Paramedics 
Kevin Hazzard 
Grand Central Publishing 2022: 336 pages 


A previous version of this review was published in the NYU Literature, Arts, and Medicine Database (Litmed). 
Web image from Heinz History Center

Jurecic’s astutely researched, nuanced answers to those questions propose a corrective to the extreme skepticism of “disembodied criticism.” Such criticism, she claims, dismisses testimonial writing from “a position of distance and privilege.”  At the same time, her answers affirm that intellectually “rigorous” responses to texts are central to the critical humanities (15). To support her position, she offers attentive readings of illness narratives by Virginia Woolf, Reynolds Price, and Jean-Dominique Bauby, as well as the theoretical writing of literary and other scholars.  For instance, Jurecic speculates that the condition of a reader’s body aligns with their responses to texts. In a chapter called “Theory’s Aging Body,” she observes that as skeptical scholarly readers aged—think of Stephen Greenblatt, Michel Foucault, Judith Butler—they turned their attention to “illness, vulnerability, and mortality” (93).  Jurecic also suggests that criticism’s function to expose cultural conditions turns illness stories into critiques of the effects of contemporary medicine on our experiences of vulnerability and mortality. The relatively new concept of living “at risk” is a case in point. Stories about living with the risk of experiencing a particular illness in the future leave potential patients with uncertainty,” prompting narratives that seek the “personal meaning of the impersonal statistics” that medical encounters now regularly deliver (18).   

Jurecic also reflects on the ways theorists have understood the possibilities of representing and responding to pain in the varied approaches of philosophical thinkers Elaine Scarry, Martha Nussbaum, and Richard Rorty, along with anthropologists Jean E. Jackson, Byron Good, and Veena Das. In an exceptionally comprehensive and nuanced reading of Susan Sontag’s theoretical, fictional, and journal writing about suffering, Jurecic uncovers Sontag’s inconsistent, yet revelatory positions on the human capacity for responding to representations of pain. The chapter on Sontag is enriched by Jurecic’s reading of Annie Lebovitz’s controversial photographs of Sontag’s final days (included in A Photographer’s Life: 1990-2005) and David Reiff’s responses to Sontag’s suffering in his memoir about his mother’s illnesses (Swimming in a Sea of Death).   

Illness as Narrative closes with examples of what Jurecic calls reparative writing and reading practices. Reparative writers, such as Jean-Dominique Bauby (The Diving Bell and the Butterfly), Jurecic claims, both create “a more coherent sense of themselves” and dislodge culturally “fixed ideas and narratives” about illness or disability (109). Her discussion of reparative reading considers the limits of two competing readings of Anne Fadiman’s The Spirit Catches You and You Fall Down. One assumes that readers will empathically and unreflectively imagine those who are culturally different from themselves. The other looks skeptically at the assumption that what medical educators call cultural competence can be acquired by reading a book. Jurecic suggests that strategies for reading and teaching informed by Janelle S. Taylor, Eve Kosofsky Sedgwick, and Rita Felski encourage more complex habits of response, such as Taylor’s concept of “’empathic curiosity’” (122).    

Illness as Narrative poses questions so central to discussions in the medical humanities that it should be read by those who teach in the health professions and disciplines. Jurecic’s book advances the groundbreaking case made by Arthur Frank that illness narratives contribute not only to medicine, but also to contemporary culture and individual lives. Since Illness as Narrative rigorously addresses questions of how to respond to and teach the literature of suffering, it has consequential implications for literary studies and the critical humanities more generally. It exemplifies how a marginalized sub-field can offer a perspective that the dominant theories in the larger discipline fail to notice. Perhaps the most urgent professional question Jurecic asks is what we lose if writers and readers attuned to the ill or suffering body are not heard in critical discussions. Fortunately, Jurecic’s clear, jargon-free prose and the texts she writes about also welcome readers in disciplines beyond literary studies and health humanities into the conversation.  

Illness as Narrative: 
https://upittpress.org/books/9780822961901/

Arlene Croce: 
https://www.newyorker.com/magazine/1994/12/26/discussing-the-undiscussable

Arthur Frank:  
The Wounded Storyteller: Body, Illness, and Ethics, 2^nd ed. Univ of Chicago Press, 2013. (Orig. 1995) 

Illness as Narrative 
By Ann Jurecic 
University of Pittsbugh Press: 2012, 192 Pages 
Web Photo by Mostafa Saeed 

Located near Woodstock, geographically and culturally, Jened offered a space free from the discrimination the summer residents encountered elsewhere. Campers engaged in uninhibited physical activities, uncensored storytelling, self-governance, mutual caretaking, real friendships, irreverent insider humor, romance, and fun. One powerful, sobering scene allows viewers to overhear campers with diverse disabilities share common experiences: being disrespected or ignored at school, overly protected at home, isolated everywhere. Another tracks the campers’ hilarity and pride over an outbreak of “crabs.” One camper declares his counselor’s demonstration of how to kiss, “Best physical therapy ever!”  

The second and longer part of the film follows several former campers into their adult lives. They become parents, spouses, professionals, and disability rights activists at a crucial historic moment for disability legislation. Both parts of the film propose that the liberty and solidarity experienced at Jened emboldened several of the campers to seek opportunity and equality in the world beyond their camp. 

While former camper Jim Lebrecht narrates the film, Judy Huemann—who died in 2023—is its political and moral center. A wheelchair user, Heumann rose from Jened camper to counselor. Campers revered her for successfully suing the New York City Department of Education for the right to teach. When she and several former campers unexpectedly reunited in Berkeley, California, they participated in the Independent Living Movement that famously started there. An astute leader, Heumann inspired an astonishing 25-day sit-in at the Department of Health, Education and Welfare (HEW) offices in San Francisco’s Federal Office Building in 1977.  She and her disabled colleagues risked their health and their lives—they slept on the floor and improvised medical necessities—to convince HEW to enforce the anti-discrimination section of the 1973 Rehabilitation Act: Section 504. Heumann’s uncompromising standoff with the HEW representative is unforgettable. As is her daily urging for the occupiers to hold fast. Regular deliveries of food, supplies, and solidarity from the Black Panthers and other marginalized groups fueled the protesters’ determinism and ultimate success. 

In other archival footage, Heumann, demanding accessible taxies, leads demonstrators to gridlock traffic in New York City intersections. Still other protestors abandon their wheelchairs and pull themselves up the steps of the U.S. Capitol to insist on disability civil rights. Recently filmed interviews with several former campers affirm that, despite the work toward disability justice that remains, they live fuller, more vibrant lives as a result of their camp experiences and the legislation they demanded.  

Crip Camp is an indispensable film because it’s told from the rarely seen perspective of disabled teenagers . The Jened campers’ irrepressible personalities, candor, and accomplishments demolish stereotypes about disability. It’s simultaneously painful to confront the inhospitable world they had to navigate and still do. The film’s co-directors, Jim LeBrecht and Nicole Newnhan, prompt us to ask why histories of the civil rights projects of the’ 60s to ‘70s have largely ignored the struggles and successes of disability activists. Yet as Crip Camp raises awareness of the “nothing about us without us” campaigns for disability rights, it also makes me restless for more documentaries. Without doubt, we have more to learn about the history and politics of the passage—and enforcement—of laws through the 1990 Americans with Disabilities Act and its 2008 Amendment.

Crip Camp: A Disability Revolution 
Directed by Jim LeBrecht and Nicole Newnhan 
Higher Ground Productions: 2020, RT: 104 minutes 

For more information about Crip Camp and its Impact Campaign, please visit https://cripcamp.com/