Summary:

This book combines social history with personal memoir. It serves as a reflection on how the various challenges of living with chronic illness have shifted over time, and how they are still real and present for the increasing portion of the population who suffer from ills invisible to others and often hard to account for.  The book's brief treatments of cultural and medical approaches to chronic illness, from ancient practices to "patients in the digital age," provide a broad perspective against which to consider current legislative, political, medical, and personal concerns for those coping with chronic illness or disability. 

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Five Days at Memorial is the book length expansion  of the New York Times Sunday Magazine article that the author, a Pulitzer Prize-winning physician-journalist, published in 2009. The book, the result of years of research and literally hundreds of interviews, chronicles the five days (August 28 to September 1, 2005) during which the medical staff remaining at Memorial Hospital in New Orleans tried to care for the patients -- over a hundred of them stranded, like the staff, in a hospital without water or electricity --following the flooding wrought by Hurricane Katrina.

After an 8 page prologue, the book is divided into two sections, "Deadly Choices" (228pp, the narrative of those five days) and "Reckoning" (256pp, the legal battles over the injections of midazolam (a sedative) and morphine by some of those staff and prosecuted as homicide -- what others called "euthanasia.") "Deadly Choices" relates almost hourly the five days inside Memorial from the viewpoint of patients, patients' relatives, physicians, nurses, administrators of Memorial, Tenet (the holding company owning and running Memorial) and LifeCare -- the long-term care area within Memorial devoted to the care of terminally ill and debilitated patients -- owned by a separate company. Ethical and legal questions of triage, DNR, record-keeping, accountability, communication (primarily the failure thereof) and leadership are on almost every page. At the heart of this book, however, is the mystery of the unexplained deaths of so many patients during those five days. (On September 11, 2005, a disaster mortuary team recovered 45 bodies from many different places in Memorial, page 234). The crux of the mystery of these deaths is the manner in which nine in particular died in the beleaguered hospital on the fifth and last day when, paradoxically, relief had become real and effective and inclusive, seemingly obviating such injections.

The final pages of "Reckoning" deal with the fallout - historical, ethical, political and medical -- and current events relevant to these five days and the almost two years following. (The final verdict of not guilty -- the actual wording was "Not a true bill" since it was a grand jury declining to indict the one physician, Anna Pou, and the two nurses, Cheri Landry and Lori Budo -- was rendered on July 24, 2007). There are a map of Memorial Hospital and a cast of characters at the front of the book and extensive notes, bibliography and index at the end.

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While the author's surgery for throat cancer when he was 14 years old, and its aftermath are the central events in this graphic memoir, Stitches is more essentially the story of a dysfunctional family. The memoir begins when David Small is six, growing up in Detroit, drawing, and observing the body language of his often silent parents and brother. Tension fills the house. David's mother's face is in an almost permanent scowl and the "mere moving of her fork a half inch to the right spelled dread at the dinner table" (16).  She slams pots and kitchen cabinet doors while David's radiologist father lets loose on a punching bag in the basement and his brother beats drums. David is in a constant struggle to avoid his mother's fury, which author/artist David depicts as a tidal wave. His father is remote, puffing silently on his pipe.
 
When David is 11 a female friend of the family, the wife of a surgeon, draws attention to a growth on David's neck, which his parents have either failed to notice or knowingly ignored. In due time the neck is x-rayed. The surgeon-friend diagnoses a sebaceous cyst and recommends an operation. With the mother's frequent protests about lack of money--in spite of an extended shopping spree the parents undertake-- it is three and a half more years before the surgery takes place. David undergoes the procedure with relative equanimity, the hospital and medical staff being familiar -- people he "thought of as my extended family, my protectors" (160). When he wakes up from the surgery, his father assures him that nothing is wrong but that he will need a second operation by a specialist. Uncharacteristically, his mother asks if there is anything she can get for him.

Waking up from the second surgery, David has no voice -- one vocal cord and his thyroid gland have been removed. "The fact that you now have no voice will define you from here on in" (186). Later, when changing his bandage by himself, he discovers a long, ugly array of stitches on the side of his neck. He has nightmares, and on one sleepless night as he wanders the house, discovers a letter written by one of his parents to "mama" which says, "of course the boy does not know it was cancer" (204). The accumulated silences and parental betrayal trigger David's delinquent behavior and  time in a boarding school, from which he runs away three times; ultimately he is expelled with a recommendation to get psychiatric help. Reluctantly, his mother drives him to a psychoanalyst -- "it's like throwing money down a hole, if you ask me" (247) -- but this intervention turns David's life around. The analyst, depicted by the author as a tall, fully clothed white rabbit, explains to David, "your mother doesn't love you" (255).  "It was such a relief to hear" said Small in an interview. Another truth is eventually revealed by David's father, who takes David out to dinner to tell him, after a lengthy silence, that the numerous x-ray treatments for sinus infections he had given the young David must have caused the throat cancer: "two-to-four hundred rads. I GAVE YOU CANCER" (286-287).

 

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The author of this long, compassionate and often startling treatise on identity interviewed over three hundred families to elicit stories about raising exceptional children, stories that also come from these exceptional children ('exceptional' is the term chosen to describe the children in the author's material about the book).

'Far From The Tree' explores the challenges children face in being raised in families where one prominent feature in their identity is forged by something out of their parents' control and generally not part of the family's experience until then. These identities are not 'vertical' (passed down from generations of parents to their children), but 'horizontal', springing up between those who share in that identity at any one time. Solomon begins by wondering about his own relationship with his parents when he was a child discovering his sexuality and ends with his own role as a father, 'the terrifying joy of unbearable responsibility' (702); between the two poles of his own experience, he meets parents and children who have experienced deafness, dwarfism, autism, schizophrenia, severe physical disabilities and diverse gender identities, prodigies, children who were concieved by rape and children who became criminal.  

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Young, beautiful Caroline Mathilde (Vikander) writes a letter to her children explaining why they have been separated. A few years earlier in 1766, she was sent from her native England to Denmark to become consort to King Christian VII (Følsgaard).

Her hopes are dashed when she discovers that her regal husband is deeply disturbed and little interested in her. They manage to conceive a baby boy – and all further relations between them discontinue.

Dr. Johann Struensee (Mikkelsen) is a progressive, German physician, interested in helping the poor. His friends wish to curry favour with the monarch and sway politics. They believe that Struensee might be good for the King and good for them. He is recruited to the royal entourage.

The plan works well. Struensee is able to calm the king, who grows fond of and dependent on his physician. Under his influence, the king asserts his own authority and begins making progressive laws – banning torture, improving sanitation, outlawing biased financial practices for artistocrats. These changes displease some of the very people who had brought Struensee to court.

Worse, the doctor understands Caroline Mathilde and her loneliness. He is instrumental in a partial reconciliation between the queen and the king, but inevitably he and she fall in love. Their affair is an open secret at court. When she bears a daughter, the King recognizes the child, but everyone knows that the infant is not his.

Eventually the affair is used to bring down both Struensee and the Queen. She is sent into exile without her children. He is lied to, and brutally decapitated in 1772. Three years later, she writes to her children and dies of fever.

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First published in France as a six-volume series from 1996-2003, this narrative is often referred to as an autobiographical graphic novel, but it is more accurately described as a graphic memoir. The author, born Pierre-François Beauchard, tells and draws the story of his family's life with the author's older brother, Jean-Christophe, whom we meet on the first page, in the year 1994: "It takes a moment for me to recognize the guy who just walked in. It's my brother . . . The back of his head is bald, from all the times he's fallen. He's enormously bloated from medication and lack of exercise." Flashback to 1964 when the author is five years old and his seven-year-old brother begins to have frequent grand mal epilepsy seizures. There follows the parents' mostly fruitless search for treatment to control the seizures, including: possible brain surgery which Jean-Christophe refuses in favor of an attempt at zen macrobiotics (this seems to work for six-months), consultation with a psychic, Swedenborgian spiritualism, magnetism, alchemy, exorcism by a priest, psychiatry (a different form of exorcism!).

Jean-Christophe's illness transforms family life as other children mock and fear the boy, the family moves to an isolated area, joins communes, and attempts to cope with Jean-Christophe's increasingly disturbed and disturbing behavior that alternates between passivity and physical aggression. The author has vivid visions and dreams and changes his name to David ("a symbolic act. I've won the war [against the threat of acquiring epilepsy" (164)]; his sister Florence suffers from constant anxiety; his mother grieves for many months after her father dies. As an adolescent and young man Jean-Christophe spends time in several institutions for handicapped individuals as well as at home, where he lives a desultory existence that is interspersed with violence toward the author and his father.

David escapes to Paris, living in a studio apartment paid for by his father, reading, writing stories, drawing, and attending classes at the Duperre School of Applied Arts. "I had to draw and write constantly. I had to fill my time in order to prevent my brother's disease from reaching me" (276). He is lonely but avoids people, feels guilty for neglecting his brother and ‘picking on' him yet is fearful that he too will be taken over by epilepsy, or death. Equally upsetting is when David discovers writings by Jean-Christophe: "He speaks of his despair and loneliness and the words might as well have come from my pen" (316). On and off, in moving displays of empathy, the author attempts to understand what happens to his brother during the seizures -- is he conscious, where does he go, does he die temporarily?

Within the narrative are intercalated multigenerational family histories that include two world wars, and European philosophical and cultural movements that influenced his parents and their search for treatments. The final section of Epileptic relates in words and images the author's adult life as he becomes a commercial artist; struggles through several relationships with women; his own infertility; his ever-present confusion, anger, and misery about his brother's illness; and his founding with five colleagues of the independent publishing house, L'Association: "It's the creation of L'Association that saves me" (327).

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Eric Calhoune is known to his classmates as "Moby" because of the extra weight he has carried since grade school.  Though his mother is young and athletic, he has inherited the body type of the father he's never known.  Now, in high school, the fat is turning to muscle under the discipline of hard swim team workouts.  But that transformation has been slow in coming, since for some time Eric has taken on a private commitment to "stay fat for Sarah Byrnes."  Sarah, whose name is a painful pun, was severely burned as a small child not, as we are given to believe early on, because of an accident, but because of a cruel and crazy father who stuck her face and hands into a woodstove in a moment of rage.  She has lived with him and his threats for some time; that and her disfiguring scars have made her tough, smart, and self-protective.  Eric and she became friends as social outcasts.  Well-matched intellectually and in their subversive wit, they write an underground newspaper together.  Sarah, however, lands suddenly in the hospital, speaking to no one, making eye contact with no one.  Eric faithfully visits her and, per nurses' instructions, keeps up a running one-sided conversation as if she could hear him.  As it turns out, she can.  She is faking catatonia because the hospital is a safe place, and she has chosen this as an escape route from her father.  Eric and a sympathetic coach/teacher go to great lengths to find Sarah's mother-who, it turns out, can't bring herself to be involved in her daughter's life because of her own overwhelming shame.  Ultimately the father is apprehended, and Sarah, nearly eighteen, is taken into the coach's home and adopted for what remains of the childhood she bypassed long before.  In the course of this main plot, other kids enter the story and in various ways come to terms with serious issues in their own lives, some of which are aired in a "Contemporary American Thought" course where no controversy is taboo.

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Tora lived happily on a mountain farm in Norway until her beloved mother's death  and her own subsequent diagnosis with leprosy, an illness common in early 19^th-century Norway and one that drove her mother to suicide.  Upon diagnosis (at the age of 13) she is taken to the leprosarium in Bergen, from which very few emerge.  Most are left there by families whose fear of the disease leads them to abandon even much-loved children, parents, and spouses.  There, despite the misery of living among many who consider themselves the living dead, she finds a friend in Marthe, the chief cook and general caregiver, a woman of almost boundless kindness; and the "Benefactor," a pastor who is remarkably unafraid of the disease from which most flee, and who befriends Tora as she grows into an unpromising early adulthood.  Another unlikely friend is a noblewoman who has languished, embittered, behind a closed door with a trunk full of her old gowns and several cherished books, including the Bible, The Divine Comedy, Gulliver's Travels, and a popular Norwegian epic about the adventures of Niels Klim at the center of the earth.  She gradually softens toward Tora, who cares for her tenderly as the older woman teaches her to read.  Reading becomes not only Tora's consolation, but that of many of her fellow inmates.  Near the end of her own short, but surprisingly rich life, Tora's father shows up after years of neglect.  Forgiving him, almost against her will, she reaches a new level of acceptance of her own mysterious fate.  The book includes a short afterword about the actual leprosarium in which the story is situated and about Gerhard Armauer Hansen who in 1873 discovered the bacillus responsible for leprosy, the first bacterium proved to be the cause of a chronic human disease.

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Parts of medical history read like detective novels.  The discovery of the source of cholera by Dr. John Snow in London in 1854 is one of those episodes.  The Ghost Map tells the story of Snow's pioneering work in what have now become standard epidemiological methods.  Tracing a cholera outbreak to a local pump in a poor section of London involved many door-to-door visits working with people who weren't always cooperative, incurring the suspicion and/or ridicule of both them and the medical professionals with whom he worked.  In the course of the story the author offers reflections on the organization of cities and on public hygiene.  Snow, an out-of-the-box thinker, also helped develop surgical anesthesia. 

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Margaret Price, a university professor with expertise in disability studies and rhetoric, alerts us to rhetorical and institutional strategies that marginalize or exclude from academic life people regarded as mentally disabled.  Her term "mental disability" subsumes an array of cognitive and psychological conditions--autism, attention deficit disorder, depression, post-traumatic stress disorder, difficulties processing spoken language or speaking in a group, among others--that are generally identified as falling outside definitions of normative cognitive or psychological functioning.  Whether a student or a teacher, manifesting such conditions can label one unfit for school.  Price asks us (1) to consider whether such conditions rightly disqualify one from academic life, (2) to question the validity of some assumed criteria for academic success, and (3) to design institutional infrastructures that accommodate neurodiversity. 

Price's analysis and her insights into forms of exclusion point to an underappreciated relationship between academia and medicine, which after all generates diagnoses of mental illness or fitness and the presumed teachability of students.  Price's book thereby engages the wider culture, which can deem the "unteachable" unfit for society.       

Probably the most startling chapter, titled "Assaults on the Ivory Tower: Representations of Madness in the Discourse of U.S. School Shootings," analyzes the rhetoric of the stories told within academia and throughout print and televised media about two campus shootings: the ones at Virginia Polytechnic and Northern Illinois Universities in 2007 and 2008.  The chapter uncovers the easy acceptance of stereotypes about mental disability and of the presumed, but unsubstantiated link between mental disability and violence that these stories insistently repeat.             

Three chapters have direct bearing on pedagogic and professional practices and assumptions.  Chapter 2 scrutinizes typical classroom practices and Chapter 3 questions criteria for professional excellence in academia, such as collegiality and productivity, from a disability perspective.  Both chapters uncover the often hidden problems that those with mental disabilities have meeting what Price views as a limited range of academic expectations and practices.  Together the chapters propose ways that academia can become more accommodating and ask what it might lose by not doing so.  In Chapter 6 Price interviews disabled independent scholars Cal Montgomery, Tynan Power, and Leah (Phinnia) Merridith.  Questioning the "rhetoric of ‘choice'" that infuses discussions of the institutionally unaffiliated or marginally affiliated, Price asks to what extent disabled scholars become independent by default.  By interviewing people she knows and who share her experience of living with a mental disability, Price also challenges models of research that assume that disengagement with its subjects generates the most valid knowledge.    

Another chapter examines three examples of autobiographical writing about mental disability:  Susanne Antonetta's A Mind Apart,  Lauren Slater's Lying , and Wendy Thompson's essay "Her Reckoning."  Price finds "transgressive power" in autopathographies written by those "who are not (conventionally) ‘articulate'" (178).  Part of that power, Price proposes, arises from the narrators' unconventional use of pronouns (Who is "I"?) and ways of "refiguring the rational" (195).  

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