Summary:

Novelist A. Manette Ansay's beautifully crafted, emotionally complex memoir describes living with a chronic painful, debilitating condition that began mysteriously and has continued to elude both diagnosis and remedy. Without a clear inciting event or a healing resolution to frame her narrative, Ansay structures her memoir as a series of agile reflections in which scenes from the past and present dissolve into one another, mimicking the distortions of time that chronic illness issues. "Time doesn't pass," she writes. "It bleeds, blurs, washes me along" (27).

Ansay's narrative opens when, at age 36, she has returned to visit the somber rural Wisconsin town of her childhood in a body that has lost its "unselfconscious sense of movement" (10). She recounts how she insisted on beginning piano lessons when she was 7, persevering through years of pain and increasing fatigue that ultimately caused her to withdraw from the Peabody Conservatory of Music in Baltimore. The withdrawal ended her dedicated labor to become a performer. Instead, Ansay navigated medical systems in an urgent, but elusive search for a diagnosis.

Multiple Sclerosis, Chronic Fatigue Syndrome, and Lupus could not be verified. Neither could the possibility that playing the piano with nearly manic vigor (in her teachers' view) damaged her body. Ansay's matter-of-fact description of playing Hurricane with her friends in her grandparents' apple orchard-trucks full of pesticides doused the children as they hid in the branches-suggests another still unproven etiology.

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Ryan Knighton writes in his irreverent memoir that his sometimes comical, sometimes dangerous clumsiness—he smashed his father’s car into a boulder and nearly backed a forklift over a co-worker—registered on others as an unfortunate character trait, the carelessness of a distracted teenager. On Knighton’s eighteenth birthday, a doctor offered another explanation: retinitis pigmentosa. The diagnosis of a degenerative eye disease that causes night blindness and tunnel vision before progressing to complete blindness rescued his moral standing. This rescue and the diagnosis seemed to increase rather than moderate his youthful drive for independence along with his search for strategies to make his disability less conspicuous. He tested his independence by attending Simon Fraser University and sharing an apartment with a deaf student, and he discovered that the chaos and flowing alcohol of the local punk rock clubs made him indistinguishable from other stumbling revelers. The clubs became a place where “blindness worked” (50).

Knighton's title Cockeyed: A Memoir captures and prepares readers for his humorous, never self-protective narrative stance and approach to making blindness work. Although he sustains his irreverence as the narrative unfolds, Knighton also makes tamer concessions to his diminishing vision, such as leaning to use the distinguishing white cane that offers "artificial sight" and a "rickety kind of freedom" (68, 154). He later reconsiders his headlong pursuit of independence when he meets his sighted partner Tracy. With her he discovers an "alarming and rewarding" dependent relationship, in which his disability enables an "intimacy few are given" (183). He also quietly reflects on the meaning of blindness after a family tragedy places his disability in a larger context. Here Knighton coaxes his readers to understand blindness as both an individual and a shared incapacity. The death of a loved one, he writes, blinds us from ever seeing him again. "Seeing," moreover, "is itself touched with elegy. . . The world we see is always gone" (181).

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In Dirty Details, Marion Deutsche Cohen writes about the unrelenting labor entailed in caring for her husband Jeffrey at home as multiple sclerosis turns his symptoms from "mere inconveniences" (11) to extraordinary demands, which can disturb her sleep as frequently as twenty times a night.  The premise of her unsparing narrative is that "we have got to spill the dirty details" (26) of such arrangements before the endurance-draining responsibilities of home care such as hers can be understood and redressed.  In a culture that favors narratives of seemingly heroic individual effort, Cohen's brutally forthright descriptions of the effects of Jeff's needs on her life can be mistaken for a self-pitying complaint, rather than an urgent, revelatory, political call to action.  Like her husband, a well-published physicist at the University of Pennsylvania when diagnosed with MS at age 36 in 1977, Cohen is an accomplished professional.  With a PhD in mathematics, Cohen teaches college students as well as publishes poetry and prose.  She and her husband also shared, with increasing asymmetry, the parenting of their four children.                 

Cohen captures the wearying routine of her days in her narrative's echoing refrain, "nights, lifting, and toilet."   The nights refer to Cohen's dangerously disrupted sleep.  Her husband's respirator can sound every half hour or so, inciting her to worry "about the psychological effects of seldom being allowed to finish my dreams" (23).  (When she asks if the machine can be fixed, she's told that it's supposed to behave that way.  By implication, so is she, despite the toll on her well-being.)  Yet she daily rallies the strength to lift her husband on and off the toilet, a feat, among others, that sometimes defied the powers of several hospital nurses working together.   Toilet also means responding to Jeffrey's regular calls to her to drop what she's doing, run upstairs, and bring him a jar.  The jar at least relieves her from lifting.  She experiences only intermittent relief, however, from finding and keeping home health aides who are able to show up reliably and behave civilly during the few hours per day they can be funded.  What results from these tests of human stamina, Cohen tells us, is not "ordinary stress" that some optimistically believe can be managed by taking stress reduction workshops, but rather "dire straits."  "Calling dire straits stress," she corrects, "undermines well spouses and makes us feel alienated and confused about where we stand" (32). 

It's that standing in the broadest sense of the word that Cohen's book most searingly addresses.  While Dirty Details contains one woman's account of caring for a disabled husband at home, the book's wider purpose is to make the labor of family caregivers visible with all its strains, conflicts, messiness, failures, anger, and, at times, humor.   As the straights become increasingly dire, though, Cohen writes about what happens to love as she moves from sustaining tenderness, candor, and their physical intimacy to diminishing her compassion for Jeff and saving herself:  a "pure survival instinct" (87).   After sixteen years in his family's care, Jeff at first reluctantly enters Inglis House, a residence that provides as much independence as possible for those who cannot live independently, where he continues to write and publish.  Cohen's professional life, social life, and beloved parenting once again flourish.  The story she is freed to write (illustrated with photographs by Anna Moon taken with Jeff's consent) lead readers away from her particular circumstances toward a comprehensive interrogation of social and medical systems that operate by leaving the most chronically ill and disabled citizens in their families' care by default.   And leave the families in dire straits.

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On February 16, 2003, readers of The New York Times Magazine came upon Harriet McBryde Johnson's cover story, "Unspeakable Conversations," and a remarkable image of her gazing directly at those readers from her power wheelchair.  Her story memorably recounts her uncompromising, yet civil disagreements with Utilitarian philosopher Peter Singer about nothing less than the value of her life.  That narrative essay is one of eleven stories published in Too Late to Die Young.

They make the case that philosophers and others have incorrectly imagined Johnson's life, and the lives of others with chronic and disabling conditions, as burdensome and not worth living.  Born with a degenerative neuromuscular disease, Johnson grew up in a family that appreciated her; she practiced law in her native Charleston, South Carolina, and became nationally known for her disability activism.  Still, she encountered a world filled with people who feared her condition.  Fear, she found, led them to assume that disability inevitably brings suffering and to use that assumption to justify acts that would prevent her birth.

Her stories, conversationally and often humorously, ask readers to question why they burden some people with calls to justify their lives or to assure the world that they experience pleasure.  Each story recounts an episode that reveals the pleasures Johnson experienced as an active agent in the world.  She ran for a county office, represented her state at a Democratic National Convention, stood her ground for free speech and against Secret Service tactics when President Reagan spoke at her law school, protested Labor Day Week-end telethons, traveled to Cuba to cover a disability conference for a magazine, advocated for clients in employment discrimination cases, and made many, many friends.

Feeling exhilarated rather than confined by her wheelchair, she bears witness, perhaps unexpectedly, to another pleasure:  "the simple delight of movement."  She writes of maneuvering around Charleston, "I zoom through chaotic swarms of tourists, zip around the raggedy sidewalks . . . loop around every inconveniently placed garbage can, with maximum speed and also with style and grace" (252).  But her stories also describe her wheelchair stumbling over incompatible surfaces, one of which sends her to an emergency room far from home.  This episode also brings moments of grace, this time with the ER staff.  After learning who she is, they Google her on-line profiles and writings.  Delighting in their patient with unpredictable needs, they place print-outs of her electronic portfolio in her chart.

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When diagnosed with Amyotrophic Lateral Sclerosis (ALS) at age 36, filmmaker Ben Byer began recording a video diary.  Episodes from his diary create the engaging, coherent narrative of "Indestructible," a documentary that intimately, but unsentimentally invites viewers to witness Byer's and his family's responses to his diagnosis.  Their first impulse is to search for a cure for this degenerative disease, "the grim reaper of neurological diseases," a physician tells him.  They also find themselves seeking ways to understand living with loss, most centrally losing the illusion of control over their lives. 

Over the course of three years Byer and family travel to six countries, including Greece, China, Tibet, and Israel.  During his journey, Byer, an irrepressible extrovert, also seeks the companionship and insights of other ALS patients and families, wishing to create a world-wide bond among people who struggle daily.   A montage of clips from family videos prefaces the film, revealing Byer in the decades before his diagnosis.  The images show a luminous child, who grows into a playful, photogenically handsome teen ager and young man, husband, father, son, and brother.  His exceptional force of personality, incandescent smile, and spontaneous sense of humor fill the screen.  These robust images contrast touchingly with the thinner, clumsier Byer who later struggles to remove a t-shirt.  But they also reveal continuities between Byer's capacity to enjoy his life during seemingly carefree days and his strength of spirit as he becomes increasingly more disabled, disappointed, and introspective.  Although even such strength can't alter his condition, it nonetheless sees him through to the next day and fresh adventure.

The family in the montage and the film emerge as Byer's source of support as well as conflict.  One of the most devastating conflicts arises from his father Steve's restless determination to find treatments to reverse or retard ALS.  After searching the Internet for remedies, Steve turns his garage into an ad hoc distribution center for an herbal concoction he encourages his son to drink.  To advance his son's place on the waiting list of a Chinese neurosurgeon who performs olfactory cell transplantation, he recruits other ALS patients for the procedure.  The results are dubious, in some cases perhaps fatal.  After these strategies fail to reverse Byer's physical decline, and place others at risk, the camera rolls during a family showdown that exposes their fears and desperation as it acknowledges their love.  This memorable scene does so in a way that's consistent with the rest of the film: by letting the camera show, not tell. 

Even the many moments when Byer's family help him with daily activities and his most reflective moments at the end of his film resist sentimentality and easy didacticism.  Byer's equally irrepressible young son John raises a fork wound thick with pasta to his father's mouth and loops his belt through his pants, setting off giggles all around.  The ordinariness and extraordinariness of these acts, the learning of selflessness, the uneasy acceptance of dependency, the inevitability of loss are told through such images or captured in fragments lifted from daily conversations.  Bathing Byer, his brother Josh matter-of-factly says, "You don't have all the time in the world":  a searing acknowledgment of Byer's decline that reminds us of all human fragility.  The closing scenes of the film unobtrusively place Byer's solitary experience in the long history of the search for meaning in human struggle.  They record his wobbly, yet victorious ascent of Masada, supported by Josh, right after we hear a rabbi recount Camus's version of the myth of Sisyphus. 

 

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