Summary:

In a dramatic monologue, Joanne traces the devastation of a familial proclivity to breast cancer through four generations of women: her grandmother Sarah; her mother; Joanne herself and her two daughters, one of whom is also Sarah.

Joanne’s mother and grandmother both died very young of breast cancer; however, many other family members vanished in the Holocaust and the number of familial cancer deaths is insufficient for her to qualify for genetic testing. Her friend Linda, also a mother of two daughters, learns too late that she carries the BRCA gene; she urges Joanne to be tested.

Tormented by not knowing and equally tormented by what should be done if the test is positive—both for herself and her daughters, she convinces a doctor to lie so that the test can be performed. It is positive; Joanne opts for bilateral preventative mastectomies. During a visit to the gravesite of her mother and grandmother, she begins to explain the genetic risk to her daughters. 

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Twelve-year old Philip is admitted to the hospital for a month of nightly infusions of amphotericin, a drug used to treat severe fungal infections. Wise beyond his years, he’s been in the hospital before and is only too familiar with its routines: the "vampires" who take blood; the candy-stripers who volunteer cheerfulness.

Four nurses welcome Philip back, teasing him about his annoying but intelligent insights and promising excellent outcomes this time. The doctors are testing a wonderful new drug that should eliminate all the horrible side effects that he had experienced in the past. But the new drug does not work, and Philip passes a miserable night. 

He feels sorry for his parents who are eager for him to receive the best of care; he puts on a smile for them and notices them putting on smiles for him. He tries to be brave for the doctor too, but surprises himself by voicing his opinion, finally making his physician understand that the new anti-side-effect drug does not work.

In the midst of yet another difficult night, Philip decides that he will refuse all future infusions. And he begins to feel well. We do not know what will happen in the morning, but one has the hopeful impression that Phillip will have his own way.

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A chorus of lab techs making symmetrical repetitive motions with microscopes, pipettes, and petri dishes opens the play. They persist in the background of the set, which is the waiting and consulting rooms of a clinic for reproductive technology.  The chief, Dr. Staiman, is not only an expert in this field of human biology — he also enjoys an international reputation (and many patents) for his genetic manipulation of orchids in a quest for perfect blooms.

Heather and Rose are both clients of the facility. Heather wants a baby and needs help to be able to conceive. Rose could actually conceive on her own; however, she is investing in expensive and painful genetic selection to avoid having a child with the same trait as her brother. His Tourette’s syndrome, she contends, ruined life for her parents and herself as well as for him.

It emerges that Heather too has Tourette’s syndrome, but she does not believe it ruined life for her family and is unafraid of having an affected child. The women must wrestle with the notion that Rose does not think someone like Heather should exist; and Heather wonders if she should be testing her own embryos.

The two clinic doctors, Blume and Staiman, offer similar services, but as an ethicist, Blume worries about the moral implications of the new technology. Heather challenges Staiman over his willingness to destroy an embryo that might become a person like herself. He seems baffled by her concern, claiming that science makes perfection possible and that the decision should belong to the parent.

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The first-person, nameless narrator is in mid-1970s San Francisco on a "sabbatical" that is more like an exile from his academic post in the east. He takes an office in a downtown building to force himself to leave his dull accommodations. Occasionally he can hear everything that transpires from the space on the other side of the wall, which is the office of psychiatrist, Dr. Schüssler. Normally, the woman doctor runs a white-noise machine to ensure privacy, but one patient — who becomes “my patient” — hates the noise and insists it be turned off.

Adopted in infancy, “my patient” is in a fraught lesbian relationship. Her doctor has been encouraging her to find her birth mother, but she keeps resisting. Finally she embarks on a long exploration that is told through her accounts to the doctor, through conversations repeated and letters read out loud. As an academic scholar, the eavesdropping narrator is able to trace records that could not be found by the patient; he takes the liberty of meddling, falsifying an agency letter and setting her on the correct path. He also realizes that the psychiatrist’s father was a Nazi officer by listening to telephone conversations with her own mentor.

“My patient” learns that her mother was Jewish and escaped death by being in a special facility as a comfort woman. Chameleon-like the mother’s identity changes over and over. In contrast to the nameless patient, her name moves from Maria to Miriam to Michal; she lives in Israel where the patient goes to find her. The biological father’s identity is a mystery—perhaps someone whom Michal loved, perhaps a Nazi officer. The sacrifice of her child to a Catholic adoption agency moves from inexplicable selfishness to desperate selflessness. Surprises continue to the end when "my patient" finds an Israeli sister who has been in contact with the mother but is no less confused over her identity.

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Marie Commeford, daughter of Irish Catholic immigrants who grows up in Brooklyn, narrates her life story in episodes rich with reflection on the losses, failed fantasies, illnesses, and disappointments of a life at the edge of poverty, which is also rich with love and poetry and humor and the stuff of which wisdom is made.  The story unfolds as memory unfolds, in flashbacks and reconstructions shaped by a present vantage point from which it all assumes a certain mantle of grace.   From the opening story in which a neighbor girl slips on the steps to a basement apartment and is killed, to repeated glimpses of a blind veteran who umpires the neighborhood boys' street games, to the bereaved families Marie meets when she works for the local undertaker, to her gradual discovery of her brother's closeted homosexuality, and to her aging mother's death, the story keeps reminding us of how much of life is coming to terms with the "ills that flesh is heir to," and also how resilience grows in the midst of loss.  Because much of the story represents the vantage point of a child only partially protected from hard things, it invites us to reflect on how children absorb large and hard truths and learn to cope with them. 

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Damon Weber's proud father, Doron, has written a searing memoir that enfolds a story of parental love and loss into a medical exposé. By the time Damon turned four, he had two open-heart surgeries to correct a congenital malformation that affected circulation to his lungs. His parents were led to believe that after the surgeries, their effervescent, sociable, academically and artistically talented son was set for life. However, as Damon turned 12, they became concerned about what his father calls "his unsprung height," his shortness of breath, and a strange protrusion in his abdomen (40). Returning to his attending physician, they were surprised that she withheld information from them about a condition known as PLE (protein-losing entropy), which can manifest months or years after the kind of surgery (Fontan) their son underwent. PLE enlarges the liver and allows proteins to leak from the intestines. Without adequate protein, Damon's body could not grow. His father worried that they might have passed the established window of opportunity to treat the complication.

The memoir, which reads like an extended eulogy to a beloved son, fuses scenes of family life with difficult medical decisions aimed at reversing the effects of PLE. However, none of the interventions succeed, leaving a heart transplant as Damon's last hope. As Weber recounts each decision leading to the transplant, he exposes flaws in the way hospital systems operate, in the way families are treated, and in the care provided by the medical team that lobbied to perform the transplant. Damon died after his transplant physician made herself scarce after misdiagnosing a post-operative complication, and an inattentive hospital staff ignored his parents' justifiable alerts to ominous symptoms. Scenes of the hospital staff waiting impatiently at the door to Damon's room to remove the machines sustaining and monitoring him, as his distraught parents say good-bye, are disturbing. When the Webers initiate a lawsuit, the transplant physician cannot locate Damon's medical records. The narrative fully absorbs Weber's sorrow and anger.

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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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Nora Kynd (born in 1825) was a central character in Barrett’s Ship Fever (in this database). She survived illness and quarantine at Grosse Ile, but lost contact with both her younger brothers, Ned and Denis. She reaches Detroit by 1848 where she learns about herbal remedies from a kindly landlady. She marries late and has a son, Michael, but never stops searching for her brothers. Her husband dies. One day in 1868, Nora sees Ned’s name as the proprietor of a hunting and fishing lodge in the Adirondacks. She packs up everything and moves there with her young son.

Ned takes Nora and Michael into his home. He carries on with the hunting business and taxidermy, but they increasingly cater to people with tuberculosis who come for “The Cure” of good food, fresh air, and lots of rest—as a reflection of the famous nearby sanatorium (unnamed but likely the Trudeau Sanatorium at Saranac Lake). In this capacity, they meet lodgers Clara and her two daughters Gillian and Elizabeth—the almost abandoned family of the naturalist Max from Barrett’s story “Servants of the Map” (also this database).

Young Elizabeth has a cough and an eye for Michael, but he has eyes only for Gillian whom he eventually marries. Together they take over Ned’s Inn. For her cough, Elizabeth becomes a resident of the sanatorium and finds her own husband in fellow invalid, Andrew. Together they open a nearby boarding house for other invalids and Nora joins them in the endeavor as the nurse, serving until her death. But Nora was difficult to replace and Elizabeth is now searching for a new nurse to help with the care of her ailing clients.

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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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