Summary:

Entering a school as the first student with a serious disability (cerebral palsy) after starting his education in a "special" school, Christopher Nolan had to develop careful and clever strategies for developing friendships, allowing others their curiosity, and finding ways to use his considerable gifts against the odds of both the disease and the prejudice it bred.  One of his strategies is the inventive, cryptic, poetic, Joycean idiom in which he writes his story.  He did, in fact, succeed in a school where he was accepted as a kind of experiment, in an area of Ireland not known for its progressive attitudes.  In this narrative he moves back and forth between inner life, family life, and life at school, allowing readers to get to know him as a deeply reflective, adventurously social, and courageous human being, living with his debilitating condition with a degree of consciousness that took full account of the losses as well as finding avenues of expression that allowed him, intellectually, at least, full range of motion.  The narrative takes us through his school years where he distinguished himself as a poet and also as a human being for whom life with a disability shaped an extraordinary dexterity with language.

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The author takes us on a highly colorful autobiographical tour of his medical career - his personal life never enters this account - from a classical medical education in Paris as a young expatriate Swede (he remains expatriate the entire book) to his internal medicine practice in France, including a tour of Naples as a volunteer during the cholera epidemic of 1881 and his finally settling in Italy. There are also anecdotes - many of them side-splitting and told with uncommon skill - about conducting a corpse back to Sweden, a truly thrilling journey to Lapland,  encounters with the legendary Charcot, his return to San Michele whence the book begins with a mythopoetic retelling of his first visit there, and his last years at San Michele as patron of a community (both local and international) and as collector and explorer of the nearby Mediterranean.        

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Dr. Paul Brand, who grew up son of English missionaries to South India, achieved world renown for his research on leprosy and related research on the dynamics of pain. This book, one of several of his reflections on physiology, combines autobiography, stories of research, and reflections on pain and pain management. The three topics roughly correspond to three discrete sections.

It opens with a story of the early death of a child with a rare neurological dysfunction that made her insensitive to pain. Brand's long work with victims of leprosy in India and then in Carville, Louisiana, gave him wide exposure to the consequences of life without adequate pain. Having spent 27 years in India, 25 years in England, and 27 years in the U.S. before writing this retrospective, many of his reflections include observations about cultural variables in perception of pain, how pain is communicated and managed, and how people deal philosophically with the problem of pain.

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Robert Murphy was a professor of anthropology at Columbia University when he became progressively paralyzed by an inoperable spinal cord tumor. His book is a personal journey through profound physical disability, an exploration of the self, and a study of the social construction of disability ["Disability is defined by society and given meaning by culture; it is a social malady" (4)]. As he writes The Body Silent he is virtually quadriplegic, hitting the keys of his computer with the eraser end of a pencil held in place by a 'universal cuff' wrapped around his palm. He is still traveling to Columbia to teach his classes.

Murphy applies the metaphor of an anthropological field trip to his experience: "This book was conceived in the realization that my long illness with a disease of the spinal cord has been a kind of extended anthropological field trip, for through it I have sojourned in a social world no less strange to me at first than those of the Amazon forests. And since it is the duty of all anthropologists to report on their travels . . . this is my accounting" (ix). Drawing not only on his own experience but also on research for which he received funding, Murphy instructs his audience in the metaphysics of his situation, and in the social as well as physical challenges of disability.

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Lucy Grealy, poet, tells the story of her childhood and young adulthood, a twenty year period of overwhelming physical and mental suffering. Yet the author is so resilient, so intelligent, so insightful, and such a good writer that her story transcends mere illness narrative. At age nine, first misdiagnosed and finally identified as having facial bone cancer (Ewing’s sarcoma), Lucy underwent several surgeries and more than two years of intensive chemotherapy and radiation treatments. Pain and nausea, anxiety and fear of more pain and nausea were only part of the ordeal.

The young Lucy became aware of what it is to be severely, chronically ill. Her sisters behaved differently toward her: they were polite. "Suddenly I understood the term visiting. I was in one place, they were in another, and they were only pausing." Even her father felt uncomfortable at her hospital bedside, and Lucy was relieved that he came infrequently.

But being at home was worse: in the hospital the other patients and the staff expected little from her and she felt no guilt or shame; amidst her family, she blamed herself for the tension, arguments over money, and her mother’s depression, even though these elements had existed prior to her illness. Her hair fell out and she became dimly aware that people were staring at her face. Nevertheless, "I . . . was naturally adept at protecting myself from the hurt of their insults and felt a vague superiority . . . . "

Well enough to return to school, Lucy’s disfigured face drew taunts from classmates; she understood finally that she was perceived as ugly and that she would not be loved. Only on Halloween, when she could mask her face, did she feel free and joyful, unconcerned about her appearance, "normal." Her moods now alternated between despair, determination, and escapism. She became convinced that only facial reconstruction and a restored appearance would make life bearable.

During years of reconstructive surgery Lucy evolved complex rationalizations to give meaning to her suffering. Two anchors had stabilized her existence throughout the misery: a passionate adolescent love of horses, and an adult love of poetry. Eventually outward appearance and inner life became harmonious. "The journey back to my face was a long one."

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A son’s story of his father’s illness, treatment, and resultant destruction by the "psychic-driving" experiments of Dr. Ewen Cameron at Montreal’s Allan Memorial Institute in the 1950’s. The effect of the father’s illness on the family is recounted, as is the son’s gradual realization, only when he is himself about to become a psychiatrist, that something abnormal must have taken place during those long hospitalizations. Weinstein tells other patient stories in some detail as he recounts the legal fight for compensation awarded finally in October, 1988.

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A new graduate from medical school experiences her first seizure on the eve of beginning internship. Diagnostic workup reveals a mass in the wall of the third ventricle, which, at the time of surgery, is a vascular malformation. The narrative takes the reader through the four years of the author's struggle with her diagnosis, treatment and resultant disability, a seizure disorder.

Laced through the tale are patient vignettes, told from the vantage point of a newly sensitized doctor who is a long-term patient herself. Heymann is gently critical of many of the interactions she experienced with her physicians, attempting to chide her colleagues into being more sensitive to patient-centered concerns.

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Born in 1921 in Belarus (White Russia), the author lost his father (a doctor) as a baby and was raised by his mother who worked as a surgical nurse and midwife. He excelled in school and was on the verge of entering medical school, but the political upheaval of World War II drew him away from studies.
 
Drafted to serve in the Polish army, the eighteen year-old became a sergeant in charge of a platoon by June 1939 fighting against Germany along its border with Poland. Three months later he was captured and imprisoned in cruel conditions. By November, he escaped and began a long walk home, helped by strangers, only to find that the Soviets had taken over. Arrested again, this time for being anti-Communist, he spent January to June 1941 in a Soviet prison, and narrowly avoided execution when the Russians retreated at the German invasion of Minsk. Another return home was met with the tragic news that his mother had been killed when German bombs hit the hospital in which she worked.

Enraged by the succession of destructive invaders, Ragula helped create a nationalist freedom army, the Eskradon, ironically with German support, and a Bulletin to inform citizens and lobby for better conditions. By the time World War II drew to an end he was married to Ludmila (in 1944) and on the move, seeking a medical education.

As refugees, the couple moved to Marburg, Germany in 1945, where Ragula began medical school. But money was always a problem and the post-war restructuring of Europe made them fearful. Hearing of a program for refugees in Louvain, Boris entered Belgium illegally in 1949 and finally completed his medical degree in 1951 at age thirty-one. In 1954, the couple settled in the medium-sized town of London Ontario, Canada. There Ragula interned and set up a family practice. He and Ludmila raised their family of four in peaceful security that contrasted starkly with their own upbringing.

Precocious in promoting health, Ragula campaigned tirelessly against smoking, inactivity, and overeating, and he worked in aboriginal communities, convinced that a doctor's role was to prevent disease as much as it was to treat it.  Here too he found enemies and friends.
 
In 1963, Ragula was involved in a non-related kidney donation between patients-a selfless act that touched him deeply. For him, it represented the pinnacle of scientific achievement and epitomized how humans should care for one another.

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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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Aaron Raz Link was born a girl, named Sarah, and loved as a daughter. Twenty-nine years later, after inner turmoil, deep thought and relentless examination of how society views gender, Sarah became Aaron, a gay man. This starkly open and moving book describes, in Aaron's words and then in his mother's words, both the costs and the rewards of this journey.

The book is divided into two sections: the longer, beginning section is Aaron's, an intense rendering of what might be called an inner dialogue: Aaron talking to himself about his place in a gendered world; Aaron talking to society about the role of men and women; and Aaron talking to us, the readers, as if we were his close friends, gathered around him as he revealed his life.

The second section belongs to his mother, Hilda Raz. In musing, episodic scenes, she writes about herself as Sarah and then Aaron's mother, about her own work as a poet and editor, and most poignantly about losing her breast to cancer.

On page 86 Aaron says, "A stereotype is a kind of camouflage; the eye finds what it expects to find, and passes over details." Throughout this book we are asked to look at, directly but never sensationally, our bodies' organs, our gender "details," not only as functional anatomy but as symbols of identification.

In both sections, I felt pulled along on this journey, both as someone invited and as someone looking on, an emotional voyeur, and in both sections I observed the unflinching honesty of the authors' revelations. But it in was this final section, the mother's story, that I felt most keenly the love between the two authors. It is this love that becomes the strength of the narrative, the ground on which this incredible story unfolds.

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