Summary:

The Renewal of Generosity: Illness, Medicine, and How to Live contemplates the phenomenon of generosity as it is realized in the stories of physicians and patients.  For Arthur Frank, generosity is grounded in the willingness of people to give themselves over to dialogical processes of communication wherein participants best realize themselves through relational engagement: generous, dialogical communication leads to a renewal and realization of human being. Health care systems today tend to impede communicative generosity, however, and the result is a de-humanization and de-moralization of both physicians and patients.  As a remedy, Frank proposes, first, that we re-figure our conceptualization of the physician-patient relationship—from the economic or business metaphor of “provider” and “client,” we should turn to the metaphorical conceptualization of “host” and “guest,” which clearly has implications for manner of treatment and communication that occurs in the relationship.  In addition, Frank turns to and thinks with stories of physicians and stories of the ill to reflect on the ways that generosity is realized.  Drawing on the wisdom of the striking philosophical triumvirate of Marcus Aurelius (Stoicism), Mikhail Bakhtin (Dialogism), and Emmanuel Levinas  to amplify the reflections emerging from the physician and patient stories, Frank ultimately proposes “exercises” for training to generate a vivifying generosity within the medical profession, which can in turn lead to a re-humanization and re-moralization for physicians, improved care for patients, and enhanced flourishing for all.

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Andrew Schulman is a New York guitarist with a long history of playing in hotels, restaurants, small groups, and formal concerts—even in Carnegie Hall, the White House, and Royal Albert Hall. His memoir describes his experience as a patient in a Surgical Intensive Care Unit (SICU), where he was briefly clinically dead. Six months later he began a part-time career as a guitarist playing for patients and staff in that very same SICU. 
           
In July of 2009, Schulman underwent surgery for a pancreatic tumor (luckily benign) but crashed afterward. He suffered cardiac arrest and shortage of blood to his brain for 17 minutes. Doctors induced a week-long medical coma, but his condition worsened. His wife asked if he could hear music; he had brought a prepared iPod. When the opening chorus of Bach’s St. Matthew Passion played in his earbud, the computer monitor showed that his vital signs stabilized, and he survived. The nurses called it a miracle.            

Convinced of music’s healing power, Schulman proposed that he return and play for patients and staff. He describes various patients for whom he played over the next six years (with permission or changes of name and details). He explains his approach to choosing music, pacing it, and feeling hunches for what is right for a given patient. He interviews experts and reads scientific papers in order to explain how the brain processes music. Music reminds patients of their earlier, healthier lives; it coordinates right and left brain; it brings calmness and peace.
 
Imaging studies show that music (and emotionally charged literature) stimulate the brain regions associated with reward—similar to euphoria, sex, and use of addictive drugs.

Schulman knew some 300 pieces from a wide range of music, but his illness damaged his memory so that he could recall only six of them. That meant his work relied on sheet music. Near the end of the book, however, his “rehab” of playing three times a week, concentrating on the music, and intending to help others—all this allowed his brain to heal, and he began to memorize as before. Schulman consults with experts and undergoes two brain scans and other studies that show the neuroplasticity of this brain that allowed it to rewire and memorize once again.

Although Music Therapy is discussed as an allied profession, Schulman is considered, rather, as a “medical musician” playing only in the SICU. Provision of music, whether by Music Therapist or “medical musician,” is, however, usually not covered by insurance and therefore not available to patients.           

There’s a six-page Afterword by Dr. Marvin A. McMillen, who Schulman describes as “central” to his survival. McMillen writes that being both a critical care doctor and a critical care patient himself (polycystic kidney disease), he knows the importance of emotional support to patients, healing environments, and the power of music. McMillen was also pivotal in allowing Schulman to play in the SICU.

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Suzanne O’Sullivan is a neurologist in the British National Health Service. She has a particular interest in psychosomatic illnesses, and in this book, she covers what she has learned about them. O’Sullivan provides these learnings mostly from clinical experience rather than as findings from empiric studies on psychosomatic illnesses.   

Each chapter is built around one or more case studies that focus on particular psychosomatic illnesses, and include historical perspectives and various theories that might explain why they occur.  

The cases O’Sullivan uses presented themselves as seizures, paralysis, urinary tract troubles, generalized and localized pain, gastrointestinal problems, fatigue, blindness, and dystonia. Patients sometimes came to her with pre-determined diagnoses such as epilepsy, Lyme disease, chronic fatigue syndrome, myalgic encephalomyelitis, and fibromyalgia among others. O’Sullivan is emphatic that psychosomatic illnesses are not just any presentation of illness that cannot be linked to a pathological basis. Psychosomatic illnesses arise from “the subconscious mind [that] reproduces symptoms that make sense to the individual’s understanding of how a disease behaves.” (p. 83) Illness presentations that are feigned or self-inflicted (e.g., Munchausen’s syndrome) are not psychosomatic illnesses in O’Sullivan’s view.  

Each chapter delves into some particular aspect of psychosomatic illness relevant to the case study. These include history (e.g., role of the uterus in hysteria), mechanisms at work (e.g., conversion reactions, dissociation), triggers (e.g., stress, loss, personality traits), factors (e.g., previous illness experiences), illness behavior disorders (e.g., associating illness to benign physical sensations), and the higher incidence seen among females. Though O’Sullivan teases out various characteristics and workings of psychosomatic illnesses, she admits that they remain vexing to clinicians because, “almost any function of the body can be affected in almost any way.” (p. 170)

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Wandering in Darkness is an intricate philosophical defense for the problem of suffering as it is presented by medieval philosopher Thomas Aquinas.The work addresses the philosophical / theological problem of evil, which might be expressed as follows:  if one posits an all-good, all-powerful God as creator, yet suffering exists in the world, then (a) God must be evil, since he created it; (b) God is less than all-powerful, since suffering came to be in his creation, and he could not stop it; (c) God is evil and weak, since suffering came to be in his creation, and he did not want to stop it; or (d) suffering is an illusion.  No alternative is, of course, very satisfying. In her book,   Eleanore Stump augments Thomas Aquinas’s theodicy by reflecting upon what she calls “the desires of the heart,” a dimension of human experience that Aquinas leaves largely untreated in his consideration.  Stump explores this dimension by breathtaking exegeses of Biblical narratives as narratives: the stories of Job, Samson, Abraham, and Mary of Bethany.  “Understood in the contexts of [these] narratives,” Stump argues, “Aquinas’s theodicy explains in a consistent and cogent way why God would allow suffering" (22).

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This is an ethnographic work written by a Swedish anthropologist who has lived in Cairo, Egypt for several years curating the cultural tropes that are woven into the lives of her traditional Egyptian subjects. Malmström sets the scene for her work by describing a 1994 incident wherein CNN broadcast live the female genital cutting of a young girl in Egypt. A secret practice made public, Malmström uses this event to springboard her commentary on how female genital cutting is practiced, experienced, and viewed among Egyptians.  

Female genital cutting is defined as the partial or total removal of external female genitalia for non-medical (i.e. cultural) reasons. This is largely a practice carried out in Africa and some parts of the Middle East. Egypt has one of the highest global rates of female genital cutting, and the cutting usually occurs at the age of 9 years. Many reasons are cited for the cutting, and in Egypt it is done to decrease a woman’s sex drive as well as to fit the standards of beauty (i.e. labia minora are considered unattractive). It had usually been performed by a traditional practitioner, but more recently, this human rights violation has been medicalized in Egypt and is often performed by doctors in an operating room using anesthesia. Even though Egyptian law and Muslim as well as Coptic Christian clerics have issued bans on female genital cutting, the practice continues in secrecy.  

Malmström starts her book by saying that female genital cutting may actually be carried out in large part as Egyptian political protest against the West. She uses excerpts from interviews with women of different generations, social strata, and degree of devotion to Islam to describe their different experiences and opinions on topics that center around womanhood and the many components of womanhood in Egypt.  

While the title suggests that Malmström will tackle female genital cutting  head-on throughout this piece, she actually takes a more circuitous route. She spends several chapters describing other woman-centric issues to familiarize the reader with Egyptian culture. For instance, Malmström describes how sexuality is expected to be expressed at different points in life: in girlhood, adolescence, and after marriage. She focuses on how Egyptian women are expected to straddle many expectations regarding sexuality depending on the context: sexually receptive to the husband only, for instance, but not so much so that the husband struggles to satisfy her.   One of the most telling quotes regarding the meaning of womanhood is,

“A woman should always be soft towards a man...She should never accuse her husband of anything or argue with him. A woman should be strong and never show her true feelings. A woman must be beautiful. A woman will win through beauty, softness, and through cooking....A woman should not show her sadness because of him [her husband], since she turns ugly, loses her health and eventually, her husband. She should be even softer towards him and give him everything in life” (p. 169).  

Malmström delves into the centrality of cooking, pain, and endurance of suffering in the lives of traditional women and how these items, as well as being “cut” are seen as necessary to the satisfactory construction of Egyptian female identity. This exploration of many parts of womanhood in Egypt allows the reader to attempt to engage in a nuanced understanding of female genital cutting in the context of a broader, textured Egyptian culture. 

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INTRODUCTION            
Writing for all the co-authors, Rita Charon challenges “a reductionist, fragmented medicine that holds little regard for the singular aspects of a person’s life” and protests “social injustice of the global healthcare system” (p.1). She gives a history of narrative medicine, lists its principles, and summarizes the book’s chapters, mentioning that several come as pairs that present theory then practice. The six principles are “intersubjectivity, relationality, personhood and embodiment, action toward justice, close reading (or slow looking), and creativity” (p. 4). The basic thesis is that healthcare can be improved by narrative medicine because “narrative competence can widen the clinical gaze to include personal and social elements of patients’ lives vital to the tasks of healing” (p. 1). 
This is a dense, theory-laden book from the group at Columbia University. The summaries below touch of some of the major points.   

PART I, INTERSUBJECTIVITY             
Ch. 1, Account of Self: Exploring Relationality Through Literature
Maura Spiegel and Danielle Spencer describe the richness of literature that allows readers to respond creatively. In clinical settings, a caregiver may similarly listen attentively and help co-construct a narrative with the patient. Literature can help us explore “the limits of rationality and positivism” (p. 29) and move from “a model of autonomy to one of relationality” (p. 34). 

Ch. 2, This is What We Do, and These Things Happen:  Literature, Experience, Emotion, and Relationality in the Classroom.
Spiegal and Spencer write that current medical education does a poor job of helping future physicians with their emotions.  Clinicians profit from a more integrated self and will listen better to patients and respond to them.      

PART II, DUALISM, PERSONHOOD, AND EMBODIMENT            
Ch. 3, Dualism and Its Discontents I:  Philosophy, Literature, and Medicine
Craig Irvine and Spencer start with three literary examples that illustrate separation of mind and body. This dualism has pervaded modern medicine, causing losses for patients and caregivers, especially when there are power imbalances between them.  The “clinical attitude” (p. 81) dehumanizes both caregivers and patients.           

Ch. 4, Dualism and Its Discontents II:  Philosophical Tinctures
Irvine and Spencer argue that both phenomenology (appreciative of embodied experience) and narrative hermeneutics (privileging reciprocal exchange of persons) help us move beyond dualism.  Theorists Edmund Pellegrino (also a physician), Richard Zaner, and Fredrik Svenaeus help us understand how caregivers and patients should relate. 

Ch. 5, Deliver Us from Certainty: Training for Narrative Ethics
Craig Irvine and Charon write that various humanistic disciplines “recognize the central role narrative plays in our lives” (p.111). There is, however, “indeterminacy” in stories that “cannot be reduced by analyzable data” (p. 113). Narrative ethics urges us to consider issues of power, access, and marginalization for both the teller and the listener. The authors review recent ethical traditions of principalism, common morality, casuistry, and virtue-based ethics. They believe that narrative ethics, emerging from clinical experience and now allied with feminist and structural justice frameworks, will provide a better approach for many reasons. “Narrative ethics is poised to integrate the literary narrative ethics and the clinical narrative ethics” (p. 125).  

PART III, IDENTITIES IN PEDAGOGY            
Ch. 6, The Politics of the Pedagogy: Cripping, Queering and Un-homing Health Humanities
Sayantani DasGupta urges attention to issues of power and privilege in classrooms, lest they “replicate the selfsame hierarchical, oppressive power dynamics of traditional medicine” (p. 137). “Cripping” and “queering” provide new perspectives on knowledge, for example the untested binaries of physician/patient, sick/well, elite/marginalized, teacher/student. Drawing on disability studies, health humanities, and queer politics, DasGupta challenges “medicalization” and the “restitution narrative” (p. 141).  

PART IV, CLOSE READING            
Ch. 7, Close Reading: The Signature Method of Narrative Medicine
Charon stresses “the accounts of self that are told and heard in the contexts of healthcare” (p. 157). Close reading, traced from I. A. Richards through reader response theorists, is “a central method” for narrative medicine (p. 164). Close reading enhances attentive listening, and both of these deepen relationality and intersubjectivity, allowing for affiliation between caregiver and patient (pp. 175-76). Such linkages aid healthy bodies and minds, even the world itself (p. 176).             

Ch. 8, A Framework for Teaching Close Reading
Charon describes how she chooses texts and provides prompts for responsive creative writing. She illustrates “the cardinal narrative features—time, space, metaphor, and voice” (p. 182) in literary works by Lucille Clifton, Henry James, Galway Kinnell, and Manual Puig.  

PART V, CREATIVITY            
Ch. 9,  Creativity: What, Why, and Where?
Nellie Hermann writes that “healthcare in particular has a vexed relationship to the notion of creativity,” in part because of issues of control (pp. 211-12); values of “evidence based” and “numbers-driven” medicine are also factors. Narrative medicine, however, “is about reawakening the creativity that lives in all of us” (p. 214).            

Ch. 10, Can Creativity Be Taught?
Hermann reports on techniques used in the College of Physicians and Surgeons at Columbia, including prompts and a Portfolio program. A “Reading Guide” helps clinical faculty (and others) respond to student writing. Responses to writing can nourish the “creative spark.”  

PART VI, QUALITATIVE WAYS OF KNOWING            
Ch. 11, From Fire Escapes to Qualitative Data: Pedagogical Urging, Embodied Research, and Narrative Medicine’s Ear of the Heart
Edgar Rivera Colón suggests that “we are all lay social scientists of one kind or another,” seeing people in action in various contexts. He affirms an “assets-based approach to public health challenges, as opposed to a deficits-based and pathology-replicating paradigm” (p. 259). We are all embodied actors in relationship to power, privilege, and social penalty. Research through interviews and participant observation show “meaning worlds” in tension with “systemic inequality and structural violence” (p. 263). 

Ch. 12, A Narrative Transformation of Health and Healthcare
Charon presents and analyzes a case study of patient Ms. N. as treated by internist Charon. They’ve been working together for decades. Charon writes up her perceptions and shares them with Ms. N. Speaking together, they “became mirrors for one another” (p. 274). Psychiatrist Marcus discusses transference and transitional space in that experience. A caregiver as witness can shift healthcare from “instrumental custodianship to intersubjective contact” (p. 288).            

Ch. 13, Clinical Contributions of Narrative Medicine
Charon describes applications of narrative medicine, all with the aim of improving healthcare. She describes techniques for interviews of patients, writing methods, and ways to improve the effectiveness of healthcare teams, as well as changes in clinical charts and other narrative descriptions of patients.

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The subtitle is accurate enough: “A Memoir of a Family and Culture in Crisis,” although the author J.D. Vance is, in fact, the focal point of view throughout, from his childhood to his success as an adult. Few young people made it out of the hills to enjoy stable and successful lives, but J.D. was one of them, earning a degree at Ohio State University, then a law degree at Yale. While recounting his life, he also describes his relatives and neighbors, and he interprets the many dilemmas of his hillbilly culture. 
 
Vance was born in 1984 and grew up in Jackson, Kentucky, a poor town following the collapse of coal mining. His family was beset with poverty, alcoholism, mental instability, and more. His mother had nine miscarriages and suffered from addictions; she had multiple husbands. The culture around him suffered from domestic violence, drug abuse, hoarding, unemployment, honor defended by fists, knives, or guns, as well as bad financial habits, bad diets, obesity, lack of exercise, sugary drinks, dental problems, and what he calls “emotional poverty.”  There was welfare abuse and, in general “a chaotic life.”  He credits his grandparents, other relatives, various teachers and professors for supporting him, guiding him, and comforting him when he was hurt, angry, and/or confused.  

Like many other hillbillies, J.D. moved some hundred miles north into southern Ohio, where steel companies provided jobs—that is, until they closed, like many other employers in the Rust Belt. There also, hillbillies were left without income and social problems increased. Stores and restaurants closed. Payday lenders and cash-for-gold shops took their place. Drug dealers and users took over empty houses.  

After high school, Vance joined the Marines. He credits the military for teaching him discipline, persistence, and for developing his self-respect. For his success at Yale, he thanks his professors, his girlfriend (later wife), and classmates for helping him understand customs of New England society. One example: he leaves a banquet to call his girlfriend; she instructs him on how to handle the nine pieces of unfamiliar silverware surrounding his plate.  

The last three chapters (11, 12, 13) and the conclusion analyze his experience on more conceptual terms, including the “social capital” prized by the the New England world, social instability of the culture he was raised in, and “adverse childhood experiences” (or ACEs), the psychologists’ phrase for the damaging events children experience in a culture of poverty, violence, and limited futures. He writes that governmental child services have policies that don’t understand the important roles of aunts, uncles, and grandparents in subcultures that rely on extended families.  Indeed, faithful to his mother, he, as an adult, provides specific help to her. 

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Talking with Doctors, a memoir by David Newman, follows the author’s dizzying journey to find a physician and treatment plan after being diagnosed with a rare malignant tumor perched dangerously near his brain stem. Despite the author’s education, money, connections and geographic privilege (Mr. Newman is a New Yorker surrounded by “the best” hospitals and the “the best” doctors), he finds himself struggling to make any sense of the conflicting medical advice he receives. The vertigo induced by the deluge of advice he gathers in his countless trips to multiple medical centers, is only exacerbated by the egotism and childishness of some of the doctors he sees. The indecencies range from the routine—waiting hours for doctors that are running behind schedule—to the utterly bizarre—a doctor returning Mr. Newman’s $10 copay as a gesture of good will after explaining that his tumor was inoperable and would likely be fatal.   Mr. Newman’s career as a psychotherapist is intimately interwoven into the fabric of the memoir. His analytical eye strongly informs his search for a physician whom he can trust. Moreover, knitted into the narrative is Mr. Newman’s experience with his own patients whom he is forced to refer to other therapists while he is receiving treatment.   Coloring the tone of the entire memoir is the fact that Mr. Newman has survived the tumor around which the memoir is framed. Nonetheless, Talking with Doctors is a harrowing and suspenseful read.

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This monograph is an important contribution—along with the Health Humanities Reader (2014)—to the burgeoning field of health humanities, a new academic field and the presumed replacement for (and expansion of) medical humanities. While the medical humanities included philosophy, literature, religion, and history, health humanities includes many more disciplines, and the creative arts.
This book is dense with theory and abstraction, but it imaginatively and intelligently promotes the notion that health is a larger and more useful concept than disease, which dominates and limits standard medicine. 

Five authors are listed for the book as a whole; none are attributed specifically to any of the eight chapters.
 
The first chapter “Health Humanities” promotes health humanities as an expansion of medical humanities to include more people (including unpaid caregivers and patients), social and national well-being, and the arts, such as dance, music, and visual art. We need to consider wider ranges of meaning, agency, and patients’ varying life stories. Unpaid caregivers have been neglected, even though “the majority of healthcare as it is practiced, is nonmedical” (p. 13). Medicine per se has been too science-based and too disease oriented, but critical theory and the arts can be “enabler[s] of health and well-being” (p. 19) with many applications to hospitals, clinics, homes, and neighborhoods.

“Anthropology and the Study of Culture” describes a wide range of inquiry, both worldwide and throughout human time, including rituals, conceptions of disease, health, death, and impacts for patients. Some cultures believe in spirit possession. The Chinese have worked with qi (life energy) for millennia. Cultural studies look at popular media, spiritual perspectives, also local and subcultural values.
 
“Applied Literature” discusses pathographies, including mental illness (for example, self-harm); it reviews concepts from Rita Charon and describes how reading groups can promote well-being. Literature expands our understanding of humans well beyond the biomedical gaze. Closely related, “Narrative and Applied Linguistics” reviews notions from Osler, Barthes, Bruner, Propp, Frank, and others. Patients want, beyond technical expertise, healthcare personnel who will help them co-create an enabling narrative. New techniques in linguistics include analysis of a corpus of usage, for example, teen language, thereby gaining approaches to young patients who cut themselves.

At 23 pages, the longest chapter is “Performing Arts and the Aesthetics of Health.” It posits that all arts are uniquely human because they are relational, aesthetic, and temporal (with time in a kairos sense, not just chronos). The arts fit into health practices, which also share the same three qualities. The arts promote coherence, agency, communication, expression, and social wellbeing, traits that are described specifically in music, dance, and drama. Similarly, the next chapter “Visual Art and Transformation,” promotes this particular art, whether elitist or popular, as communicative and transformative. The making of art can be healing. 

“Practice Based Evidence: Delivering Humanities into Healthcare” argues against Evidence Based Practice and its limitations. Instead of Randomized Controlled Trials, smaller, more qualitative studies may be more accurate and useful. Practice Based Evidence (and feminist and postmodern approaches) all create wider and deeper notions of validity.

“Creative Practice as Mutual Recovery” suggests that caregivers, whether professional or lay, also find healing as they deliver care.

In “Concluding Remarks” we read, again, that  “the majority of health care and the generation of health and well-being is non-medical” (p. 153). Medicine and medical humanities are “too narrow a bandwidth,” but health humanities can support all caregivers, various institutions (including schools), self-care, and complementary medicine.   

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The therapeutic benefits of music are well known, but the theory that music might be harmful to our health, unless it is so obviously loud it injures our eardrums, comes as a surprise.  In this volume, historian of medicine James Kennaway traces the idea of pathological music from antiquity to the present.  The book’s introduction considers whether music really can create illness, whether it be of a physiological or a psychological nature.  We learn, for example, of arrhythmias and seizure disorders that are set off by music, not to mention the so-called Stendhal Syndrome, a psychosomatic reaction to great works of art.

The second chapter describes how, during the 18th century, disease was thought to result from excessive stimulation of the nerves, and how that created a theoretical framework for the “medical dangers of music” (p. 23) as being rooted in the nervous system. The example of the glass harmonica is given. This musical instrument, invented by Benjamin Franklin, had its status elevated when Mozart composed two pieces for it.  However, its success became its undoing, as it was feared the tones would “make women faint, send a dog into convulsions, [and] make a sleeping girl wake screaming through a chord of the diminished seventh” (p. 45). Special gloves were devised so that a performer might, by avoiding direct contact with the apparatus, spare his nerves. 

In the following chapter, Kennaway explores how Wagner dominated 19th-century discourse on pathological music in that his work’s eroticism and novel harmonies were thought to produce neurasthenia (a popular catch-all term for an array of anxiety disorders). Listeners were brought to an unhealthy state of ecstasy, and singers, being driven to the abyss, went insane. Women who had recklessly allowed themselves to become “Wagnerized” were punished with a “lack [of] children, or, in the most bearable cases, men” (p. 74).

Moving into the 20th century, the author describes how ideas about pathological music acquired a political connotation.  In Germany, the perceived threat of avant-garde Jewish composers (eg. Schoenberg) to public health culminated in the so-called Degenerate Music exhibition of 1938. And in  the United States, African American-influenced jazz was credited with the power to “change human physiology, damaging the medulla in the brain” (p. 121).

Finally, the book concludes in the present day with music for brainwashing (e.g. a consideration of whether subliminal messages hidden in rock songs could lead to suicide), and the use of painfully loud or abrasive music as sonic weapons in warfare, or for torture.  The author’s verdict is that the notion of music as bad for your health, though emerging in new forms, is more topical than ever.

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