Summary:

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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In the 1527 sack of Rome, undiscplined troops of the Holy Roman Emperor rape, pillage, and destroy. The beautiful couresan Fiammetta Bianchini opens her house to the marauders, inviting them inside for food and comfort. The act gives her household a moment’s reprieve. Her golden tresses savagely shorn, she swallows her jewels and escapes north to her native Venice in the company of her servant and companion, the dwarf, Bucino Teodoldi.

Arriving with almost nothing, they set about establishing a reputation and securing backers. The small company is helped by Fiammetta’s friend and admirer the satirist and poet, Pietro Aretino. Her portrait is painted by his friend, Titian.

Clever and loyal to a fault, Bucino frets over finances and willingly engages in subterfuges that mesmerize their audiences. Fiammetta accepts the attentions of tedious but wealthy admirers in exchange for a house and status. She comes to rely on a blind woman healer, called La Draga who supplies medicine and cosmetics. Bucino is suspicious and jealous, but he tolerates the competition grudingly. He too has many ailments, including headaches and arthritis, because of his deformity.

Suspense swirls around a banned book, a Jewish shopkeeper, and La Draga’s mysterious origins in the glass-making town of Murano.

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Summary:

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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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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Summary:

At the request of a German editor, Charles Darwin (1809-1882) began his autobiography at the age of 67. His granddaughter and editor, Nora Barlow, tells us that he revised it over several years.

Darwin remembers little about his mother who died when he was 8, but talks at length about his forceful physician father, who measured 6 foot 2 inches, and weighed over 336 pounds. His father's success guaranteed that Charles would never have to work for a living. Darwin was a naughty boy schooled in humaneness and manners by his loving sisters. Early on, he showed a passion for collecting, mostly beetles, but also coins, shells, and minerals. He hated boarding school; he enjoyed running in the open air and shooting snipes with his dogs. He quotes his father's characterization of him as a young boy: "You care for nothing but shooting, dogs, and rat-catching, and you will be a disgrace to yourself and all your family" (28).

As a medical student at Edinburgh University, he witnessed operations without anesthesia which caused him to revolt against his father's wish that he become a doctor; he couldn't take the sight of blood.  At Cambridge, he found most of his classes and professors dull, except for his botany professor, John Stevens Henslow, his mentor and hiking companion. The paternal plan for him to become a clergyman foundered at Cambridge, as Darwin questioned the Thirty-nine Articles of the Church of England.

From 1831, he sailed with Capt. Fitz-Roy on board  The Beagle for 5 years and 3 days (again, against his father's wishes). He quarrelled with  Fitz-Roy whose mood swings required Darwin's tact. They disagreed about slavery, FitzRoy defending it, and Darwin abominating it. He carried Lyell's Principles of Geology with him, read Milton, and collected numerous specimens which he sent back to Britain.

28 months after his return, Darwin married his cousin, Emma Wedgwood. The marriage was happy and produced 10 children.

In the chapter on his religious beliefs, Darwin gives 4 reasons for believing the Old Testament to be false; as he has studied the laws of nature, he has ceased to believe in miracles. He rejects Bishop Paley's argument for intelligent design: "Everything in nature is the result of fixed laws" (87). The Christian god is cruel, as he causes innocent animals to suffer and condemns non-believers to hell. Darwin confesses he does not understand "the mystery of the beginning of all things" (94), calling himself an agnostic. He outlines the great Victorian men he has known, though his ill health has long  prevented him from traveling or seeing friends. He discusses his publications, including Origin of Species, stating he did not care whether he or Wallace got the credit for the theory of evolution. He attributes his success to his moderate abilities. He has been methodical, industrious, and commonsensical.

The appendix includes Darwin's list of pro and con arguments about marriage, Mrs. Darwin's papers on religion, and a short chapter on his illnesses.

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Summary:

John Romulus (also known as Richard) Brinkley was a physician (in the diploma-mill sense of the word) who, in 1917, pioneered, in the U.S. at least, the notion of goat testicle transplant. "Transplant" must be understood in the loosest sense of the word since Brinkley simply removed the testicles from young goats and sewed them into the abdominal wall and scrotal tissues - without any attempt to connect blood or nervous tissues of either goat testicles or human  - of men for the alleged purpose of relieving impotence. From 1917 until his downfall at the hands of Morris Fishbein, a medical crusader esconced in the AMA, which organization Dr. Fishbein helped establish as the premier advocate of organized medicine in the U.S., Dr. Brinkley was perhaps the most recognizable physician in the U.S.

He ran for the office of Governor of Kansas in 1930 (losing by technicalities that today would have overturned the results), and established the most powerful radio station in the land, XERA, that promulgated his glandular chicanery all across the continental U.S. As a proponent of such skullduggery, Brinkley was continually in the sights of Dr. Fishbein, whose main reputation nationally was as an exposer of medical fakery. Eventually Fishbein lured Brinkley into a libel trial that resulted, in 1939, in the catastrophic downfall of an immensely talented and wealthy man who spiraled into bankruptcy and death in 3 short years.

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Summary:

In the early Eocene period, a small horse (Eohippus) accidentally dies in the depths of a lake. Over time, the body of the mare decays. Heat and pressure convert the remains of the animal into oil. Thousands of feet beneath the surface of Utah and millions of years later, that oil is tapped. As it travels through a pipeline, a nearby worker is injured. As a result of the accident, the man loses part of his arm.

The worker, Djamolidine Hasanov, was born in Azerbaijan. Before coming to the United States, he changed his name to Jimmy Nash. As a boy, he loved to bicycle. As an adult in America, his pastimes include drinking beer and writing haiku. After he is injured at work, Jimmy becomes a drifter and lives off his disability benefits.

The oil derived from the matter of the prehistoric horse continues its journey through time and space. It is refined into gasoline and transported to a gas station in Austin, Texas. On June 23, 1975, some of that gasoline is pumped into the tank of a Ford Pinto. One drop of the fuel comes from the once-pumping heart of the ancient equine.

The car is driven by Clarissa Sanders, a college student who is enthralled by biology and genetics. Later that day, she picks up a hitchhiker on a highway leading to San Antonio. The man has an accent and is missing his lower right arm. Jimmy Nash shares some LSD with Clarissa. He even drives her automobile. On the same day, Clarissa inhales some soot particles emitted in the car's exhaust fumes. They contain a carcinogen - benzapyrene. Thirty years later, she is diagnosed with metastatic adenocarcinoma of the lung. Three months after receiving the diagnosis, Clarissa dies.

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Summary:

Author Jennifer Culkin has been involved, for all of her nursing career, in high stakes, heart stopping, instant-decision-making areas of critical care.  After years working in Neonatal Intensive Care, she became a flight nurse--and giving intensive care to trauma victims while trying to maintain balance and sterile technique in a wind-buffeted helicopter has to be one of the most difficult tasks a nurse might undertake.  Her memoir, A Final Arc of Sky, opens with such a scene.  The patient, Doug, is soon crashing, and the nursing team, Jennifer and her partner, have to make a series of tough decisions (pp. 8-12).  From this scene on, the action rarely wavers.  And although Culkin keeps the pace moving, she is not always, or even most often, telling us about similar traumas.  She deftly weaves her personal narrative--husband and sons and dying parents--in and out of scenes from her nursing career, braiding the plot lines of her life in chapters both moving and compelling. 

In those chapters that deal with the often dangerous helicopter transports Culkin has flown, we learn (and we feel) just what it's like to be a flight nurse crammed in-between patient and helicopter door, juggling instruments that too often slip to the floor and trying to save patients that too often want to die.  In those pages that deal with family, we are privy to Culkin's internal debate about how to separate family from nursing (what she calls "the great neuronal divide between my work and my life" (p.136), and we see that she sometimes doesn't have much energy left at the end of the day to draw close to those she loves.  Part of what makes this memoir difficult to put down is the persona of the narrator herself: Culkin comes across as an honest, often irreverent risk taker, a woman who likes to ride her bike down dangerous hills at breakneck speed and allows her son to do the same (see chapter six, p. 57); a woman who loves the dangerous drama of flight nursing and doesn't worry about crashing (p. 80)--in fact she enjoys strapping herself "into the eye of a maelstrom" (p. 80). 

This memoir entertains, and it provides a glimpse into how some caregivers not only risk their lives to save the lives of others but also shoulder the responsibility of making split second decisions upon which a patient's life might depend.  And there is a surprise in this memoir, one that I can't too fully divulge because to do so would be to rob potential readers of their own discovery.  Suffice it to say that near the end, Culkin reveals something about her own health, an illness she has fought against in every chapter.  When we learn the details of her own illness narrative, we look again, with new understanding, at her fascinating career and her interactions with her loved ones.   

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Mabry Kincaid, a New York art conservator is flying home on September 11, 2001, when news comes to him on the plane of the attacks on the World Trade Center.  Unable to return to his apartment in the city, he decides to visit his aging father, an Episcopal priest, in his boyhood home in North Carolina. There he meets Audrey, an African-American seminary student in her forties, who has moved in to care for his disabled father.  In the ensuing weeks Mabry is led to reflect deeply not only on the fate of the country and of his career, but on how his father's apparently final illness compels him to come to new terms with their constrained relationship. The death of the brother Mabry always believed to be the favorite has left a painful chasm between father and son, made more so by his father's own admission of favoritism.

At the same time Mabry is coming to terms with his own diagnosis of multiple sclerosis and with the grief he continues to process since his wife's death from cancer.  Audrey and her son bring a new dimension to the life of the household and a widened sense of family to the two men as they struggle to lay the past to rest and to accept the radical uncertainties of the personal and national future. One interesting subplot involves Mabry's discovery of what is reputed to be a minor, uncatalogued Van Gogh painting, covered by the work of another artist, that he has brought home for his employer, now dead, and his musings about what to do with this undocumented treasure.  The question remains open for symbolic reflection as he leaves it behind in North Carolina and returns to New York for a very different kind of life than the one he left. 

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Deenie is an attractive seventh-grader whose mother, determined that her good looks not be wasted, is pushing her toward modeling. When she tries out for the cheerleading team, however, Deenie's gym teacher notices her slightly crooked posture and refers her to an orthopedist who diagnoses adolescent idiopathic scoliosis. Both Deenie and her mother are horrified. Deenie decides an operation to "fix it" is the lesser of two evils when the alternative is to wear a brace for four years, but the doctor assures her the brace is the appropriate treatment.

Wearing the brace, initially merely a source of embarrassment, frustration, and anger, gradually makes Deenie aware of other kids with whom she has avoided contact because of various "handicaps." Her relationships within the family and among friends shift because of this new self-awareness and of others' varied capacities to accommodate to her new limitations.

The most gratifying discovery for her is that the boy with whom she has been developing a first romance does not find the brace a barrier either to friendship or to the tentative intimacies of early love. The subtheme of developing sexuality complements the novel's focus on body image as a crucial aspect of adolescent psychology.

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