Summary:

Perhaps no topic in the history of medicine has been explored as much as the lobotomy.  Psychiatrists, historians and journalists have weighed in on this controversial topic, and the procedure has been featured in a number of Hollywood films.

Yet there is nothing like a narrative of a specific lobotomy patient to draw us into the subject anew.  And that is why Kate Clifford Larson’s new book, Rosemary: The Forgotten Kennedy Daughter, is so compelling—even if we already know the sad outcome of Rosemary Kennedy’s life.

Originally devised in 1935 by the Portuguese neurologist Egas Moniz, the lobotomy involved drilling holes in the skull and using a blade to sever nerve fibers running from the frontal lobes to the rest of the brain.  Moniz believed that psychiatric symptoms were caused by longstanding faulty nerve connections.  Severing them, and allowing new connections to form, he postulated, would help treat patients with intractable mental illness, such as schizophrenia and its paranoid delusions.

America’s chief proponent of lobotomy was Washington, D.C. neurologist Walter J. Freeman who, working with neurosurgeon James W. Watts, reported in 1937 that 13 of 20 patients undergoing the operation had improved.  Freeman would later devise his own procedure, the transorbital lobotomy, in which he actually used a mallet to pound an ice pick through the patient’s eye socket into the brain, then moved the pick around blindly to cut the nerve fibers.

Among the first histories of lobotomy was psychologist Elliot S. Valenstein’s  Great and Desperate Cures (1986), which strongly criticized Freeman and his contemporaries as overzealous physicians who did far more harm than good, creating docile and apathetic individuals no longer capable of caring for themselves.  Physician-historian Joel Braslow’s Mental Ills and Bodily Cures (1997) argued convincingly that a main motivation for the popularity of lobotomies—roughly 40,000 would be performed in the United States by the 1960s—was to enable staff members to maintain order in crowded, understaffed institutions.   In Last Resort (1998), historian Jack D. Pressman made the provocative claim that lobotomy represented the best science of the day and that, at least in some cases, it allowed patients to return home with fewer psychiatric symptoms.

Rosemary Kennedy was born in 1918, the third of what would eventually be nine children of Joseph and Rose Kennedy.  Joe was a successful businessman and investor who later entered politics, first as chairman of the Securities and Exchange Commission from 1932 to 1935 and then as U.S. Ambassador to Britain from 1938 to 1940.  At an early age, it was clear that Rosemary was not as mentally sharp as her two older brothers, Joe Jr. and John.  Larson hypothesizes that Rosemary’s “intellectual disability” occurred at birth, when a nurse forcibly kept her in her mother’s womb—perhaps without adequate oxygenation—while waiting for the doctor to arrive.

It was Rosemary’s blessing and curse to be born into the high-powered and prominent Kennedy family.  Her parents left no stone unturned in trying to help their daughter, sending her to special schools and programs around the world.  But they simply could not tolerate her lack of improvement.  Rosemary was a terrible speller and writer, socially awkward and at times unruly.  Joe Sr., in particular, worried about the negative ramifications to his sons’ possible political careers if word got out about their “retarded” sister.

Reading about Rosemary’s first two decades, and knowing that her lobotomy is approaching, is truly heartbreaking.  Writing letters home from her various placements, she was so eager to please.  “I would do anything to make you happy,” she told her father in 1934 at the age of 16.  “I hate to Disppoint [sic] you in anyway.”

When the Kennedys first arrived in England in 1938, Rosemary, her mother Rose and her younger sister Kathleen were presented to the king and queen.  For once, the circumstances tilted in Rosemary’s favor.  The event was smashing.  Photographs show Rosemary, who had become a very attractive young woman, resplendent in a “picture dress of white tulle.”  She felt, she said, like Cinderella.

But when the family returned to the United States in 1940, with war approaching in Europe, the situation was no different than it had always been.  Plus, now in her early twenties, Rosemary’s moodiness and emotional outbursts were becoming more frequent.

Lobotomy had gotten a lot of press in 1941, particularly in a May article in the Saturday Evening Post that highlighted the work of Freeman and Watts.  And while this piece warned about the dangers of the procedure, it mostly praised its ability to make people with mental illness into “useful members of society.”  At some point, Joe Kennedy met with Freeman and decided that Rosemary should undergo the operation.  Larson does not unearth exactly how the decision was reached—or what Rosemary was told.  But it seems to mostly have been Joe’s doing.

The problem, of course, was that lobotomy was not meant for what Rosemary had—essentially a low IQ.  But Joseph Kennedy, in conjunction with her doctors, had convinced himself she had an “agitated depression,” and thus was a candidate.  That Freeman was a zealot for the operation, as is well documented in journalist Jack El-Hai’s The Lobotomist (2005), did not help.  Most tragically, when Rosemary underwent her lobotomy some time in November 1941, something went “horribly awry.”  Patients were kept awake during the procedure and asked to talk or sing to help guide the surgeon’s scalpel.  But in Rosemary’s case, when Watts made his final cut of brain tissue, she became incoherent.  “The operation,” Larson writes, “destroyed a crucial part of Rosemary’s brain and erased years of emotional, physical and intellectual development, leaving her completely incapable of taking care of herself.”

The rest of Rosemary discusses her life after the lobotomy until her death in 2005.  She spent most of these years at a Catholic residential institution in Wisconsin.  Most cruelly, family members rarely visited, trying to render invisible what had happened.  To the Kennedys’ credit, in later years they corrected this error and brought Rosemary for visits to Hyannis Post and other family outposts.  There are only a few photographs in the book from this later era, but they help to humanize the woman who suffered for so long.

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Summary:

The book offers a detailed account by one of the nation’s leading cancer researchers of developments in chemotherapy over the past several decades, as well as the recent history of surgical and radiation treatments in the “war on cancer”—a term he resisted at first but finally embraced with full understanding of its implications.  The narrative touches on many of the writer’s own struggles over economic, political, and moral implications of what a NYT reviewer described as a “take-no-prisoners” approach to cure.  He also includes stories about disagreements with other researchers that give some insight into the acrimony that is part of high-stakes science.  At the NIH and later as head of the National Cancer Institute, DeVita faced many decisions about distribution of resources, how much to put patients at risk, and whom to include in clinical trials.  He provides his own point of view on those controversies frankly.  Not much mention is made of the causes of cancer, of nutritional or other complementary approaches, or the environmental factors in the spread of cancer. The strong focus on the book is on the development of chemotherapeutic treatments that have succeeded in raising survival rates, though few current statistics are cited.

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Kozol tells a multilayered story about himself and his father, a distinguished physician who becomes increasingly demented by Alzheimer’s disease, starting at age 88. A neurologist, Dr. Harry Kozol is able to diagnose with great specificity his own disease.     
          
Son Kozol describes his father’s initial symptoms and the slow decline, a direction that is sadly and fatefully, clear. The son goes on walks with him, describes their conversations, arranges for paid companions, and puzzles about what must be “a life beneath the life” of his progressively inarticulate father.            

Over the 14 years of this illness, there are some medical mishaps—including problems in continuity of care—depletion of the family’s money, and Jonathan’s hesitation to use a DNR (Do Not Resuscitate) order for his father or for his aging mother. He writes of his doubts, uncertainties, and mixed emotions. When his father is actively dying, Kozol dawdles elsewhere with lists and papers “obsessively.” He understands this, in retrospect, as denial. Nevertheless he arrives at the hospital and places his ear on his father’s chest, hearing breaths come slower and slower until death. Dr. Kozol dies in 2008 at the age of 102.            

Alternating with this story are long passages about Dr. Kozol’s professional life, including his work with Eugene O’Neill and family, also Patty Hearst and Albert DeSalvo (“The Boston Strangler”). For the latter two, he is an expert witness in court cases. These passages illustrate his many skills, tenacity, and ideals.

A 25-page Epilogue written a half a dozen years later casts a different light on the father-son relationship. While the bulk of the book shows a loving, respectful relationship, the Epilogue describes tensions and disagreements between the two from Jonathan’s childhood to later years. The father criticizes what he perceives as failures, lack of ambition, poor choices, and the like. Kozol describes his own illustrious career, often in directions his father disapproves. In later years, however, Kozol accepts some of his father’s advice and understands their status more as equals. In another seven years, however, Dr. Kozol’s mind starts its difficult path, and the son becomes the caregiver to the father.  

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Those who are familiar with the Mütter Museum of the College of Physicians of Philadelphia, best known for its anatomical oddities, may have wondered about the institution’s namesake.  The author of this book, a poet and native of Philadelphia, endeavors to place Thomas Dent Mütter within the context of 19th-century American medicine.  

We learn here that notwithstanding being “medicated” with wine, surgical patients emitted such agonized screams that observers were known to vomit and pass out in their seats. We learn that Philadelphia was a cesspool of infectious disease for which there was no effective treatment.  We learn too of the rivalry (including behavior that would be considered unprofessional today) between the well-established school of medicine at the University of Pennsylvania (Mütter’s alma mater) and upstart Jefferson (whose faculty Mütter would join).  

In an era before the germ theory of disease became widely accepted, there was of course no concept of sterile technique.  To suggest that a surgeon should wash his hands was to imply he was not a gentleman because “all gentlemen were clean” (page 104).  Resistance to anesthesia was based not so much on concerns about potential danger but on the notion, when it came to obstetrics, that pain was a punishment for the sins of Eve.  Doctors could be downright sadistic to their patients, to the point of beating them like livestock.  That there was no concept of surgical aftercare meant that patients would be sent home immediately following an amputation. Victims of grotesque tumors and disfiguring accidents were considered “monsters” who lived lives of unimaginable misery.  

Enter Mütter, whose importation of plastic surgery from Paris to America brought hope to thousands of incurables.  He had an intuitive sense of the role of cleanliness in reducing morbidity and mortality.  He was a passionate advocate for anesthesia when it was seen as little more than a fad.  He abandoned traditional teaching methods that held a professor should be distant and unapproachable, and became beloved by generations of Jefferson students.    

In short, Mütter emerges as not just a likeable guy, but the forerunner of a whole new concept of what a good doctor should be, a sort of cross between P.T. Barnum and Mother Teresa.    

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Brian Dolan has done a great service for the field of medical humanities through his efforts in putting together this volume. Its 19 reprinted articles cover the spectrum of disciplines/fields/methodologies that anchor our work:  history, literature, film, theater, arts, narrative, storytelling, critical (disability) studies, human values, and professionalism. His opening essay, “One Hundred Years of Medical Humanities: A Thematic Overview” very pertinently and extremely ably sets the stage for the remainder of the book. Quite helpfully, authors of “recently published articles,” in this instance from 1987 on, were asked “to reflect on their piece and add introductory comments that would help frame it, or enable them to address issues raised since its original publication” (p.167).  To the reader’s benefit, almost all of those contemporary authors did so.  As cited on the book’s  back cover, the work of some of our field’s most important educators are in this volume, including contributions from Erwin Ackernecht, Gretchen Case, Rita Charon, Jack Coulehan, Thomas Couser, Lester Friedman, Kathryn Montgomery Hunter, Paul Ulhaus Macneill, Guy Micco, Martha Montello, Edmund Pellegrino, Suzanne Poirier, Johanna Shapiro, Abraham Verghese, and Delese Wear. 

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Many are familiar with these stories from the author's practice as a midwife among the urban poor in London's East End in the 1950s.  Each piece stands alone as a story about a particular case. Many of them are rich with the drama of emergency interventions, birth in complicated families (most of them poor), home births in squalid conditions, and the efforts of midwives to improve public health services, sanitation, and pre- and post-natal care with limited resources in a city decimated by wartime bombings.  As a gallery of the different types of women in the Anglican religious order that housed the midwives and administered their services, and the different types of women who lived, survived, and even thrived in the most depressing part of London, the book provides a fascinating angle on social and medical history and women's studies.

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Beginning in 1992, Mark Duxbury and Dean McClellan are high-flying salesmen for Johnson and Johnson, Ortho branch – happily promoting the drug Procrit, (or Epogen -- erythropoietin), for anemia. The drug stimulates the bone marrow to produce more red blood cells. Developed by fledging company Amgen, it was licensed to Ortho for specific uses. Their careers take off, and they earn bonuses and stature, peaking in 1993. Soon, however, Duxbury realizes that he is being encouraged to promote the drug for off-label uses and in higher doses that will enhance sales and profits through kickbacks. He soon realizes that the drug is not safe when used in these situations. People are dying because their unnaturally thickened blood results in strokes and heart attacks.

He raises objections with his employer. For voicing concerns he is ostracized and then fired in 1998. Along with the stresses of his work, the financial difficulties and emotional turmoil, Duxbury’s home life is in tatters; his marriage falls apart and he worries about his daughter Sojourner (Sojie). He develops multiple health problems, including sleep apnea and dependency on drugs and alcohol.

Enlisting the help of the famous lawyer Jan Schlictmann (A Civil Action), whistleblower Duxbury launches a qui tam lawsuit in 2002 against his former employer. This is a civil action under the False Claims Act, which can offer cost recovery should the charges prove warranted. The lengthy process is still going. The last ruling issued in August 2009 allowed the case to proceed. But Duxbury soon after died of a heart attack in October 2009 at age 49.

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El Deafo is a graphic novel and memoir describing the author’s childhood experiences after she loses her hearing from meningitis at age 4. During her first year in school, she attends a special class with other students who also wear hearing aids. They have fun and learn how to lip read together. However, Cece’s family moves to a new neighborhood the following year, and she is forced to attend regular classes at a new school. In order to understand her teachers, she gets a powerful new hearing aid known as the Phonic Ear, which is a large device she must wear strapped to her chest. The Ear makes her feel more self conscious than ever. She struggles to fit in and make friends at school, and often feels very lonely. However, she discovers that the Phonic Ear also gives her a “superpower” – she can hear what her teacher is saying and doing around the school, even when they are not in the same room together! To cheer herself up, she pretends she is a superhero named El Deafo with super-hearing. Even better, her newly realized powers soon make her the popular kid at school because she can warn everyone to quit goofing off when the teacher is coming.

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Born into a Montreal Jewish family in 1924, Richard Goldbloom was always sensitive to minorities and at ease with difference. Jewish and Christian, French and English, music, theatre, and the arts in all forms were prevalent and valued in the family home. He became a skilled pianist and a gifted storyteller. Richard trained in medicine with his father and at McGill University then specialized in pediatrics at Harvard with the famous Charles A. Janeway at Boston Children’s Hospital.

He met the vivacious, intrepid Ruth Schwartz at McGill when they both auditioned for a play. Also Jewish, she hailed from Cape Breton Island, Nova Scotia. They married in 1945 before his studies were complete and had three children. Unlike many male physicians of his era, Richard was in awe of this tiny dynamo and attributes his happiness and success to her.

In 1967, the family moved to Halifax, Nova Scotia, where Richard became Professor of Pediatrics, Physician in Chief and director of research at the new children’s hospital. Ruth was instrumental in a wide array of philanthropic endeavors that inevitably involved her husband. She developed a remarkable museum at Pier 21, the point of arrival for generations of immigrants to Canada—a place to gather their stories and their achievements.

Many anecdotes about clinical practice and scientific innovations are told with accessible enthusiasm and gentle humor. He dispels myths, exposes hidden agendas and explains with clear examples the importance of listening to children and their parents. Underlying the entire narrative is a refreshing humility and gratitude for his “lucky life.” 

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