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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The author is a practicing neurosurgeon, one of only two hundred or so women in this specialty which numbers about 4,500. She was the first woman to be admitted to her neurosurgery residency program. Her father was a surgeon and she was definitely influenced by him and says that, as the oldest of four children, it was always expected that she would become a doctor; but she didn't decide for sure until partway through her second year of college.

Once in medical school her decision for neurosurgery as her specialty came very easily. Oliver Sacks's writing had a significant influence on her decision. She was also influenced by her college sweetheart who became her husband and who also chose to train as a neurosurgeon. He is not practicing now and they do not have children.

Her description of her long years of training are interestingly related with many individual patient stories and also many descriptions of her teachers and peers. She takes time to describe how she views the specialty itself and its power structure and all that entails. Among the interesting chapters are two about her research years, one at the center for cognitive brain imaging at Carnegie-Mellon and one as a fellow in Epilepsy Surgery. The author was fascinated with the complexity of brain function and its relation to anatomical structure with which she was much more familiar.

Firlik found that she loved "life on the learning curve" and that her curiosity was broad. About her last year as Chief Resident she said "I have had my hand in saving lives and I have had my hand in helping to end them: I'm not talking about murder, of course. I am talking about helping people die" (227). She was able to write this book because she kept a journal during her training.

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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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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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In 1701, the wax sculptor Gaetano Zumbo is invited to the Court of the Grand Duke of Tuscany, Cosimo III de Medici. His talent in is portraying the human form in various states of decay – anatomically correct, each figure set in a box recreating scenarios, as chilling memento mori.

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A movie buff in northern France goes blind after watching a short anonymous horror film. He calls on Lucie his ex-girlfriend and a cop in Lille, to take the film to an expert film analyst. The expert demonstrates that the film, made in Canada in 1955, contains subliminal images and a whole other hidden movie of little girls torturing rabbits. He is soon found brutally murdered and the film stolen.

Four bodies missing part of their skulls, their eyes, and hands are found buried by a crew laying a pipeline and the profiler Sharko is brought in to explore the crime. They make a connection to a triple murder of girls in Egypt in 1994—the three girls who did not know each other were found in different places with their brains and eyes missing.

Sharko and Lucie begin to unravel the mystery by tracking the people in the film and those who made it. Sharko goes to Egypt; she goes to Canada –both nearly lose their lives as a result. Their research brings them closer to linking the seemingly disparate murders to occult military operations, involving the French Foreign Legion and the CIA.

They solve the crime, but the ending is disturbing.

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In 1907, Mary Mallon, an Irish-born cook, is identified as the source of typhoid fever outbreaks in several of the households where she has been employed. Deemed a healthy carrier, she nevertheless cannot comprehend her role in the tragedies and rejects her responsibility. How could she harbor the germ that causes the disease and not be ill herself?

Led by Dr. George Soper, the authorities ensure that she is incarcerated on North Brother Island in the Hudson River – until a lawyer takes an interest in her case. An important part of her defence comes from the growing knowledge that many other people are also healthy carriers of the germ and they have not been incarcerated. Finally in 1910, she regains her freedom on condition that she never cook for others again.

But Mary loves cooking, and it is a far more lucrative occupation than her work as a laundress. In addition, she needs to support her common-law partner, Alfred, who has a serious drinking problem and is chronically unable to find work. Alfred had left her for another woman during her incarceration and succeeds in giving up alcohol. But he still loves Mary and abandons the other woman; he vanishes out west and is injured in a horrible fire that leaves him deformed and in chronic pain. Mary finds him and tries to help him, but Alfred now slowly slips into drug addiction.

The temptation to start cooking again is too great. The inevitable happens and Mary is caught. This time, however, she does not protest and ends her days as a captive of New York City.

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The great French actress Sarah Bernhardt (1844-1923) conducted an affair with her doctor, gynecologist Samuel Pozzi (1846-1918) in the decade before he married. They remained friends, and she always called him her Docteur Dieu (doctor god).

The handsome physician was a leading light in French gynecology and in the Paris arts community. Clad in his red dressing gown, Pozzi was the subject of John Singer Sargent's wonderful portrait (1881), which spawned erotic legends about him.

At first happy, Pozzi’s marriage degenerated into coldness, but his wife would not grant him a divorce. He then established a long-standing, public relationship with Emma Fischhof. During the Dreyfus affair, which unmasked the horror of entrenched anti-Semitism in France, physician and actress both fought against the ill treatment of the Jewish officer.

In 1915 and at Sarah’s insistence, Pozzi amputated her painful leg. Three years later, he was shot and killed by a disgruntled and delusional patient who blamed him for a minor illness.

 

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