Summary:

Thirty, three-line haiku poems, each set in a large clear font on its own page in a small booklet (approx 4 “ X 6”). The cover is a tender watercolor of a spring scene by an artist identified as Jackie.

Like all haiku, the evocative phrases celebrate ordinary life, seasonal wonder, and memories of family, gardens and home cooking: “rain on the window / happy smiles / and home made cookies.” The juxtaposition of some fragments produces a startling resonance: “last kiss / takes in a lot of territory / even in Saskatchewan.” Humour and wisdom are keenly felt: “tom boy / town boy / luxury farmer”.

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The lives of writer Cathy Crimmins, her lawyer husband Alan Forman, and their seven-year-old daughter were changed forever on July 1, 1996, at a lake near Kingston, Ontario. "Alan’s brain got run over by a speedboat. That last sentence reads like a bad country-western song lyric, but it’s true. It was a silly, horrible, stupid accident." (p. 5). While Alan steered a small boat back to dock at the end of their vacation, a teenager drove a speedboat literally over him, causing major traumatic brain injury (TBI) including seizures, coma, hemorrhage and paralysis.

Crimmins chronicles her husband’s remarkable recovery with a mix of humor, medical information, anger at HMO denial of benefits, and gratitude for the care of physicians, nurses, therapists, EMT, friends and family during this grueling, and in many ways, never-ending ordeal. Although Alan survived -- and is now capable of walking, speaking, reading, loving, working and driving -- he is a different person. The injury to his frontal lobes causes him to be disinhibited, erratic, angry, irrational, petulant, obsessive, devoted yet cruel to his daughter, and prone to severe "cognitive fatigue."

TBI is a bizarre, unpredictable illness. Crimmins notes that the degree of Alan’s recovery is atypical for the force of his trauma. In addition, TBI survivors say and do wacky things: "Where is the mango princess?" was one of Alan’s first utterances after emerging from his coma. Alan’s pre-accident sharp-edged humor was replaced by bland affability and a disturbingly vacant gaze. Yet some of what he says and does is heart wrenching and poignant.

The book clearly documents that the trauma is not limited to the patient. As Crimmins so eloquently and honestly recounts, she, her daughter, and all who knew Alan were traumatized by the accident and its aftermath.

Crimmins is an aggressive caregiver, thrust kicking and fighting into the caregiver role. Her advocacy for her husband, including research into the best rehabilitation facility, day hospital, vocational rehabilitation program, doctors, therapists, etc., was unwavering and crucial to his optimal care and outcome.

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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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Lance Clayton (Robin Williams) is an unsuccessful writer, receiving only a slew of rejections with every new novel he sends out.  He teaches poetry to a small class of uninspired students (who try to use song lyrics they think he won't recognise in place of their own homework), and the principal is threatening to end the class.  In addition, he is in a relationship with the art teacher (Alexie Gilmore) who has also caught the eye of a charismatic young writer and fellow teacher (Henry Simmons) who just published his first story in the New Yorker.  Most disconcerting of all, his son (Daryl Sabara) is an unpopular, crude, lascivious teenager who seems to take little pleasure in being rude and mean to other people, but less pleasure in anything else.  Except, perhaps, masturbation and auto-erotic asphyxiation.

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In four parts this book uses a wide variety of images--caricatures in newspapers, comic books, advertisements, and photojournalism of Life magazine--to explore attitudes to physicians and medical progress in the mass media from the late nineteenth century to the mid-twentieth century. Each section centers on a specific type of image and the analysis addresses change in perception of doctors and their achievements by privileging crucial moments of newsworthy events and discoveries.

Early in this history, the media portrayed doctors as frock-coat wearing fops.  Medical metaphors used in a political context proclaimed these attitudes well. The story of four little boys, bitten by a dog in 1885 and sent to Pasteur in Paris for the newly invented rabies vaccination, is used as a pivot point for a transition in perceptions of medicine: from a clumsy, suspicious craft to a useful, progressive science.

The third section is devoted to the public fascination with the history of medicine in the period from 1920 to 1950, Films, newspaper articles, and comic books chart the insatiable taste for scientific success and medical progress. The last section studies images of progress in Life and other magazines through a meticulous analysis of health-related articles. In this section, Hansen shows how the media participated in educating the public to a definition of science that enjoyed an enthusiastically optimistic spin.

An appendix lists American radio dramas about medical history from 1935 to 1953. A wealth of sources are documented in the notes and the whole is completed with an intelligent index.

 

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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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Two months after he starts writing poetry, the narrator collapses. The maid finds him on the floor. An ambulance arrives at the scene. Two EMT's - Mike and Bob - check the condition of the novice poet. Their assessment includes the patient's orientation, his chief complaint, his favorite form of poem (the sonnet), and the last time he used iambic pentameter. Mike reads the poet's unfinished villanelle that remains stuck in a Smith Corona typewriter. The EMT deems it awful. The ambulance crew generates a list of possible diagnoses that includes an aneurysm in the language center of the brain and (more plausibly) writer's block. The duo decide that the narrator requires evaluation in the hospital for bad poets. All of their ambulance patients receive supplemental oxygen during transport. Every poet additionally gets a copy of verse by Rainer Maria Rilke to read during the trip.

The hospital for bad poets is a teaching hospital. A swarm of medical students participate in the evaluation of the narrator. His working diagnosis is "chronic acuteness." A young physician, Dr. Krupp, takes charge of the case. He also reads the narrator's incomplete poem and agrees with the opinion of Mike the EMT. The poem stinks. Dr. Krupp listens to the narrator's breath sounds and commands him to recite poetry during the examination. The physician announces, "Poetry is the equivalent of ventilation. Poets breathe for one another, they breathe for all of us" [p 147]. Dr. Krupp decides that the narrator's problem is serious enough to warrant hospital admission for one week's worth of observation. The doctor then scurries off to treat another poet whose situation is much more serious than the narrator's.

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This collection of stories offers a sidelong view of medicine from the perspective of a thoughtful, experienced doctor of internal medicine at a teaching institution (UCSF) in an urban setting that brings a wide variety of types of patients to his door.  In a context of evident respect and admiration for even the quirkiest of them, Watts admits to the kinds of personal responses most have been trained to hide-laughter, anger, bewilderment, frustration, empathetic sorrow.  The cases he recounts include several whose inexplicabilities ultimately require action based as much on intuition as on science.  He includes several stories of illness among his own family and friends, and makes it clear in others how his professional decisions affect his home life and his own state of mind.  

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Desmond Bates is a retired professor of linguistics who lives with his second wife, "Fred," in a "northern" British town. He is becoming increasingly deaf, and, although he wears hearing aids (except when he doesn't), his social interactions--even those with Fred--are fraught with difficulty and occasional hilarious misunderstandings. His deafness is at the center of the novel, providing the title of this work of fiction, but also serving as an extended, often funny, but ultimately serious impetus to riff on aging, disability, and mortality. "Deafness is a kind of pre-death, a drawn-out introduction to the long silence into which we will all eventually lapse" (19).

Bates is at loose ends. His wife is busy with her successful interior decorating business, his adult children live elsewhere. He considers himself a "house husband" and does not really enjoy it. His aged, widowed father insists on living alone in London although he cannot be trusted to take care of himself without endangering his life (such as starting a fire in the kitchen during meal preparation). Bates visits him dutifully once a month with a mixture of dread, obligation, and guilty relief when it is over.

Desmond's hearing difficulty and boredom set him up for an encounter with a female graduate student and its unexpected complications. She is working on a thesis about suicide. Their interaction is threaded throughout the book and drives the "plot," but the details of life with hearing impairment, loss of professional involvement and purpose, and coping with an old, stubborn parent who is slipping into dementia are the main events of this clever, well-written, entertaining novel. And along the way are witty commentaries on contemporary life. The link between the narrator's profession of linguistics and his difficulty hearing the spoken word are also significant.

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