Summary:

This is the story of a child/young adult who had the misfortune of multiple health problems from the age of three until his death at 19. But even more than Jesse's story, this is the narrative of and by Jesse's father as he recalls the emotional rollercoaster accompanying the abbreviated span of his oldest son's life. The author kept detailed journals of his and his son's experiences with the health care professions, while also collecting the boy's artwork which appears to be Jesse's personal record of his own internal struggle.

Although not chronologically linear, the narrative allows the reader into the soul of the parents' agony, from the time of Jesse's initial diagnosis of hydrocephalus, through management of inflammatory bowel disease, and into the final chronicle of unsuccessful liver transplantations.

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This little volume of poetry and photos is a narrative of the life and death of a small boy with leukemia and the connection this creates with his mother, his father, and his stepfather. The poems are created by the child’s mother (the author) during the illness and after the death of her son in his early childhood; photos are done by the author’s brother. The author creates the scenario in her brief introduction to the collection of poems and photos.

In a stuttering fashion, the reader is guided through mother’s grief as she holds her son through multiple chemotherapy sessions, reevaluations, disappointments, and finally, the terminal events. The entire poetic experience is calmly reflective, but the deep grief of mother bubbles to the surface--in a controlled manner that makes the reader feel her pain, and also accept her acceptance.

The poems themselves are compelling in their simplicity: after Sam dies, the author writes, of a note of condolence received by a friend, "Now that I have a child of my own, / a friend writes, "I understand your loss." / "No," I think, "now you understand / what I had."

The author, as she adapts to the absence of her firstborn, has a second son. She reflects on the joy that she feels, but the impossibility of replacing a first love. The event of Sam’s death is so ethereal that it cannot be dated. It is a universal experience for those left behind. And Hutner leaves the reader with this sense of timelessness with her poetry, and with her own death from breast cancer in 2002.

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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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In 1997, the author’s 14-year-old son, Ike, began a puzzling, progressive degenerative illness. Slowly, this undiagnosed disease claimed Ike’s ability to walk, to study, to participate in normal adolescent activities and, finally, to reason. Going from physician to physician, seeking if not a cure than at least a working diagnosis, the author became a self-taught expert in all things neurological.

As her son’s condition worsened, she also became an expert in grief and despair. In Blue Peninsula, her first book, McKeithen relates how she became, as well, a poetry addict--reading, devouring, tearing poems out of journals, buying volumes that she could carry to office or hospital, hiding poems in her purse or pocket. Using poems or pieces of poems--sometimes she could not bear to read a final stanza, one that perhaps ended in death or unrelenting despair--she cobbled together a survival plan.

Indeed, in this small book of short, to-the-point chapters (with titles such as "Crying in the Car," Open to It," Acquiring Losses," Sifting Questions," "Naming," "Shipwreck," and "Shelving Selves"), she reveals how she used poems to grieve, to question, to celebrate, to maintain, to curse, and to endure. The story of Ike’s illness, treatment and slow decline are interwoven with these poems and the author’s often surprising commentary on how she mined the poet’s metaphors. If a poem could put suffering into words, the author suggests, she needed that poem to survive.

The author’s choice of poems and poets is far-reaching, and her interpretations of what they mean and how they helped her along the path of her son’s illness are intimate, gritty and insightful. A brief listing of poets includes Emily Dickinson (whose poem "Blue Peninsula" supplied the book’s title), Billy Collins, Elizabeth Bishop, Diane Ackerman, Zbiginew Herbert, The Rolling Stones, Paul Celan, Molly Peacock, David Whyte and many others, known and lesser known.

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Baiev’s chronicle of medical life in wartime is full of incident—tragic, touching, and repeatedly traumatic:  his own life was threatened repeatedly by Russians who suspected him and Chechens who resented him for treating Russians.  Members of his extended family were killed and his father’s home was destroyed.  He straddled other boundaries:  trained in Russia, he fully appreciated how modern medicine may bring relief not available even in the hands of the most respected traditional healers, but he mentions traditional ways with the reverence of a good son of devout Muslims.  His perspective is both thoughtfully nationalistic and international.

Finally coming to the States where he couldn’t at first practice the medicine he had honed to exceptional versatility under fire, he lives with a mix of gratitude for the privilege of safety and a longing for the people he served, whose suffering was his daily work for years that might for most of us have seemed nearly unlivable.  Before writing the book, he struggled with his own post-traumatic stress, and continues to testify to the futility of force as a way of settling disputes.  Medicine is his diplomacy as well as his gift to his own people, and the Hippocratic Oath a commitment that sustained him in the midst of ethical complexities unlike any one would be likely to face in peacetime practice.

 

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Send in the Idiots is a witty and moving tale of reunion, part memoir and part journalistic character study. Nazeer, hailing from a Pakistani family that has lived in the United States, Great Britain, Saudi Arabia and Pakistan, returns to the United States, where he had attended a school for autistic children during his early youth. He tracks down some of those who were also at that school with him, in order to find out how they are doing, what they are doing, and how their autism has affected their lives. He locates three people who were in the same class as he was and goes to visit them; he finds the family of a fourth; and finally sits down and has a slice of cheesecake with their former teacher and principal. Now a civil servant in the English government, Nazeer visits Andre, a computer scientist who makes uses of puppets to facilitate communication; Randall, a bike courier in Chicago and poet; and Chris, a speechwriter in Washington, DC. He then stays with the parents of Elizabeth, who had committed suicide a few years before, and through them finds out about her life, and about how parents may cope in the aftermath of such an awful catastrophe. Finally, he meets with Rebecca, who had been one of their teachers, and Ira, the prinicipal of the school, which has since shut down.

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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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Triggered in part by a trip to the Galápagos Islands, the author interweaves two parallel narratives: Darwin's "journey toward evolution" along with the related work of Alfred Russel Wallace; and the author's own journey through life, partially disabled and dependent on the specially fitted shoes that help him to walk.  Together these two narratives develop "all I have come to understand about chance and change, fear and transformation, variation and cultural context, ideas about the body that question the definition and existence of difference in all of our lives" (xvii).

Born with an unnamed congenital condition in which his fibulae are absent along with other lower limb "abnormalities," Fries underwent five major reconstructive surgeries as a child, but after those, what helped him most were special shoes that were fitted to his special body, assisting him to walk.  As an adult, however, he begins to experience back pain and knee problems.  The memoir relates, both in flashback, and in the present day, Fries's quest for a proper pair of shoes that will help him avoid yet another surgery -- the shoes he has been wearing are 20 years old and no longer do the job.  We meet Dr. Mendotti, who treated him like a peculiar specimen and offered a pharmacologic way out of his pain; shoemaker Eneslow, in a dingy Union Square office, whose shoes not only fit Fries well, but were festive in appearance -- "I felt both normal and special" (17); other practitioners of orthotics who try but fail to construct shoes that relieve Fries's pain, and finally, the gifted, patient orthoticist, Tom Coburn, who persists until he is able to provide shoes that work.  The shoes have been adapted for Fries's body, just as man has constructed adaptations that allow him to live in a variety of climates and circumstances.  Conversely, Fries, convinced he "can adapt to the circumstances in which my body places me (169)," draws from Darwin, whom he quotes: "individual differences are highly important for us, as they afford materials for natural selection to accumulate" (169).
 
Darwinian connections are invoked throughout the narrative.  The peculiar configuration of Fries's feet and shoes help him to ascend a series of mountain ladders while his partner, Ian -- who usually has to assist Fries with such physical maneuvers -- suddenly becomes fearful of the height and exposure;  back problems might have developed even without his congenital abnormalities because evolution of the capacity to walk upright included the tendency toward back pain; the role of chance in natural selection and the role of chance in the physical fact of congenital conditions; the positive role that his partner Ian's attention deficit disorder (ADD) could have played in the days of hunter-gatherers and the cultural context in which ADD is now considered to be "abnormal."
 
Fries discusses his fears -- both rational and irrational -- as well as his awareness of stigma, difference, and sameness.  The context of these discussions is usually a reminiscence about vacations in far-flung countries (Thailand, the Galápagos, Bali, Alaska, the Canadian Rockies) and physically challenging domestic locales (a Colorado River raft trip, the Beehive Mountain in Acadia National Park).  He  occasionally brings into the discussion his homosexuality, especially as his physical deformity affected sexual encounters.  The relationship between Fries and Ian is woven throughout the memoir as one of understanding, mutual need and benefit.  As the memoir ends, Fries worries about the likelihood he will need a wheelchair, but is at the same time gathering confidence in his ability to ride the Easy Flyer bicycle that Ian has discovered at the local bike shop.

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