In Two Voices: A Patient and a Neurosurgeon Tell Their Story

Clarke , Linda; Cusimano, Michael

Last Updated: Aug-05-2019

Kohn, Martin

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

About 20 Years ago, Linda Clarke, writer, professional storyteller and bioethics consultant was a neurosurgery patient of a colleague, Michael Cusimano at St. Michael's hospital in Toronto Canada. What was a distant relationship turned into one that was much closer. 10 years ago, Linda and Michael had a dialogue about recounting the story of her surgery and their relationship together. Linda became the "architect" of their project-- and they became co-authors in 2019 of In Two Voices: A Patient and a Neurosurgeon Tell their Story. The result is a lyrical co-memoir-- at times riveting, at other times sobering of their shared experience. What is probed goes much deeper than the facts, exposing the actors involved, their lives outside of their callings, their upbringing, and, most importantly, their differing interpretations of an important event during the surgery that only came to full light during the writing process.

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The Ninety-Third Name of God

Krugovoy Silver, Anya

Last Updated: Jul-25-2019

Davis, Cortney

Primary Category: Literature / Poetry

Genre: Poetry

Bodies of Truth: Personal Narratives on Illness, Disability, and Medicine

Moore, Dinty; Murphy, Erin; Nicholson, Renee

Last Updated: Jul-19-2019

Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

Bodies of Truth gathers twenty-five essays about experiencing illnesses and disabilities from the perspectives of patients, healthcare professionals, and families. These personal stories join the growing company of narratives that reflect on the inner experience of illness or caring for the ill and on the social circumstances that influence those experiences. In addition to the diversity of perspectives, the editors have selected pieces about an exceptionally wide range of health conditions: multiple sclerosis, brain damage, deafness, drug addiction, Down syndrome, pain, cancer, infertility, depression, trauma, HIV, diabetes, food allergies, asthma. They also include essays on the death of a child and an attempted suicide.

The essays resist easy categorization. In their Preface, the editors explain that they took “a more nuanced approach” to organizing the contributions loosely by themes so that they would “speak to each other as much as they speak to readers.” For example, Teresa Blankmeyer Burke’s spirited “Rendered Mute” calls out the OB-GYN who refused to remove his mask during delivery to allow this deaf mother-in-the-making to read his lips to exchange vital communications. Her essay is followed by Michael Bérubé’s “Jamie’s Place.” In it the father recounts the emotionally and logistically complicated path he and his son with Down syndrome navigate as they seek a place for him to live as independently as possible as an adult. This sequence invites readers to listen to two stories about disability from differing parental perspectives and circumstances. But perhaps readers can also to find commonalities in ways social attitudes toward disability fold themselves into the most intimate moments of the families’ lives.

Several of the essays take readers into a professional caregiver’s medical and moral struggles. In “Confession” nurse Diane Kraynak writes sensitively about a newborn in intensive care who distressed her conscience. She was troubled by both the extensive medical interventions he was given “because we can” and their failure to save him. When Matthew S. Smith was an exhausted neurology resident, he ignored a stroke patient who inexplicably handed him a crumpled paper. Scribbled on it was a ragged, ungrammatical, and urgently expressive poem, which he read only years later, admonishing himself “to cherish the moments of practice” that could “change your life forever (“One Little Mind, Our Lie, Dr. Lie”). Madaline Harrison’s “Days of the Giants” recounts “the sometimes brutal initiation” of her early medical training decades ago. Narrating those struggles has led her to “compassion: for my patients, for myself as a young doctor, and for the students and residents coming behind me.”

Overall, the essays range widely across medical encounters. After attending her husband’s death, Meredith Davies Hadaway (“Overtones”) became a Certified Music Practitioner who plays the harp to calm hospice patients. Dr. Taison Bell graciously thanks a pharmacist that he regards as a full partner in his treatment of patients (“A Tribute to the Pharmacist”). Tenley Lozano (“Submerged”), a Coast Guard veteran, was traumatized first by the various abuses of male supervisors, once nearly drowning, and then by her struggle to receive psychiatric care.

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The Presentation on Egypt

Bordas, Camille

Last Updated: Jul-15-2019

Galbo, MA, MILS, Sebastian

Primary Category: Literature / Fiction

Genre: Short Story

Summary:

‘It wasn’t his job to explain it over and over, to sit the families down and say, “The husband/the brother/the son you knew is no more, it’s only machines breathing for him now, and you wouldn’t be letting him go, because he’s already gone."’ These are the frustrated musings of Paul, a wearily disillusioned brain surgeon who struggles with the emotional aftermath of delivering grim prognoses to his patients’ families. After comforting a patient’s wife who has decided to remove her husband from life support, Paul hangs himself in his family’s laundry room, leaving neither a note nor trace of what compelled him to take his own life.

Career burnout, perhaps even a nagging sense of futility, would seem to be among the issues behind Paul’s mysterious suicide—in one conversation with a patient, he alludes gnomically to bad dreams that leave him either flummoxed or exhausted. Whatever the cause, Paul’s death leaves gaping lacunae in the lives of his family—his wife, Anna, and daughter, Danielle—that they struggle to patch and, in their own ways, comprehend. It is Anna who finds Paul, hanging, in the laundry room, though ‘she didn’t scream. She didn’t believe what she saw…' In that moment of speechlessness, of disbelief, Anna devises a ‘cold plan’ to keep secret the true circumstances of Paul’s death. Concealing the truth from her daughter, Anna creates a scaffolding of lies, false impressions, garbled half-truths that shape both Danielle’s and her own perception of the past.

Years later, in a moment of introspection, Danielle intuits, not likely for the first time, that her 'mother was lying about her father’s death. […] Anna insisted that the heart attack hadn’t woken him, but that didn’t make any sense to Danielle, who could be woken up by the smell of toast.’ Danielle dimly senses that her father had ‘woken up and suffered,’ but cannot grasp the facts that her mother withholds.

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I AM

Clare, John

Last Updated: Jun-24-2019

Ratzan, Richard M.

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

"I AM" is a poem by John Clare with three sestets in iambic pentameter with an ABABAB rhyming pattern unique to each sestet. In it the poet affirms his identity, his sorrows to date and ends with the expressed longing for a happier life in the presence of God and the solitude of Nature. Due to his disorderly life, unconcern for conventional spelling, and transcriptions of his poems by others, there are often multiple versions extant for an individual poem. This is true for "I AM", which Jonathan Bate, the author of a magisterial biography of the poet, states was written in a psychiatric institution about 1846. (1, page 505) For this annotation I have used what many consider to be the most authoritative edition of his poems. The poem also exists in several reliable sites on the internet.

The poet was a troubled man born near Peterborough, Cambridgeshire, England, in 1793, in meager circumstances and remaining so throughout his entire life. Save for a five month period in 1841, Clare spent the last 27 of his 71 years in psychiatric institutions. He wrote his poetry, which primarily celebrates the natural world he spent so much time in alone, before and during his hospitalizations. His reputation as a poet has burgeoned significantly in the last 100 years.

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The Unspeakable Mind: Stories of Trauma and Healing from the Frontlines of PTSD Science

Jain, Shaili

Last Updated: Jun-19-2019

Shafer, Audrey

Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

A psychiatrist and PTSD (post-traumatic stress disorder) specialist, Dr. Shaili Jain has written a book on PTSD and its many angles, from diagnosis to treatment to a larger perspective on cultural and historic influences on the development of traumatic stress. She weaves the story of her own family’s experience with the Partition of India and Pakistan in 1947, particularly its effect on her father and grandparents, as a way to consider the effect of trauma on family, but also how those traumas become ‘unspeakable.’

A brief but effective introduction outlines the seven parts of the book:
1. Discovering Traumatic Stress: historical perspective and the changing language to describe the effects of trauma.
2. The Brain: the physiologic and psychological underpinnings of PTSD, including effects on memory formation and retrieval.
3. The Body: such as addiction, cardiac effects and concerns at different stages of life.
4. Quality of Life: domestic and sexual violence, socioeconomic factors.
5. Treating Traumatic Stress: programs, treatment strategies and psychopharmacology.
6. Our World on Trauma: global health, large scale tragedy, terror and war.
7. A New Era: An Ounce of Prevention: resilience, accessibility of care including early and preventative care.

Additionally, almost 100 pages of notes, glossary, resources and an index provide an easy way to further explore, to use the book to look up specific topics, and underscore the heavily researched nature of the text. The book is eminently readable, with numerous, well-placed stories of patient encounters and particular experiences and manifestations of PTSD. These stories are illustrative of the concepts Jain ably explains. However, they also provide an insider’s view of what happens in the consulting room. In the prologue, Jain describes a young Afghanistan War veteran, who has been hospitalized after a violent outbreak at a birthday party: “Josh’s PTSD was fresh, florid, and untreated…. His earlier poise caves in to reality, and his face falls to anguish.” (p. xvi) We are in the room, listening to the patient, witnessing the tears of the medical student, glimpsing the attending psychiatrist’s response, and relating to Jain, as a psychiatry chief resident, as she understands that the individual before her, even as he shows classic signs of traumatic stress, remains an individual, a person in need of care.

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The Scar: A Personal History of Depression and Recovery

Cregan, Mary

Last Updated: Jun-11-2019

Carter, III, Albert Howard

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The Scar is a powerful, thoughtful, and moving book, part memoir about the author’s illness across some 30 years, part history of depression and its treatment and part essay to evoke cultural and personal values about sickness, suffering, health, and death. Cregan, a gifted stylist herself, draws on literature that deals with human suffering, mortality, and wisdom. She frankly describes her sorrows and hopes, the death of her baby, her attempts to kill herself, and her survival today with many blessings.

The title refers to a scar on her neck, a result of her effort to cut her throat with a piece of glass so that she would die. This attempt, in a hospital, reflects the depth of her illness and the failure of her caregivers to prevent it. Her book explores the complexity and variety of mental patients and the range of medical responses—some useful, some not—to treat them. Writing as a survivor, she draws on her journal, hospital records, emails, interviews, and more; she is part journalist, detective, archivist, and forensic pathologist—as if doing an autopsy on the suicide she attempted.

Ch. 1
What Happened describes the birth and immediate death of her daughter Anna and her descent into depression and initial hospitalization.

Ch. 2
What Happened Next discusses mental hospitals and her perceptions of being a patient in one. A dramatic paragraph describes her cutting her throat (p. 51).

Ch. 3
How to Save a Life presents electroconvulsive therapy (ECT), from the jarring images of “One Flew Over the Cuckoo’s Nest” to her own experience of some 17 treatments; she reports that these helped in recovery.

Ch. 4
The Paradise of Bedlams gives a history of mental hospitals. She is hospitalized three months, “a prisoner,” in her term.

Ch. 5
Where Do the Dead Go? explores the dilemmas of the living as they mourn the deaths of people they love, including approaches from Judaism and Christianity. Mary has nightmares about her lost baby. She discusses Freud, Rilke, T. S. Eliot and others. She buries Anna’s ashes.

Ch. 6
Early Blues discusses modern attempts of science and the pharmaceutical industry to create drugs for mental illnesses, with influences from psychodynamic and biological concepts.

Ch. 7
The Promise of Prozac discusses that famous (notorious?) drug; she takes it on and off while working on her PhD, then other drugs as they became available.

Ch. 8
No Feeling Is Final sums up many themes. She’s in her late 30s, remarried, and trying to conceive. After IVF, she’s pregnant. Baby Luke is born. She understands that the scar on her neck has an analogue with Odysseus’ scar on his leg: a symbol of survival through hard, even desperate times, for her a “double trauma: the loss of my child, the loss of myself” (p. 243).

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From Reading to Healing: Teaching Medical Professionalism through Literature

Stagno, Susan; Blackie, Michael

Last Updated: May-30-2019

Coulehan, Jack

Primary Category: Literature / Nonfiction

Genre: Anthology (Mixed Genres)

Summary:

The subtitle of this collection explicitly states its purpose and implies its audience. The content includes essays on teaching, as well as a number of canonical stories taught in medical humanities courses. The first section consists of key texts that present a rationale for teaching narrative literature to medical and other health professions students. This is followed by five sections, each of which covers an aspect of that rationale, i.e. narrative exploration of professional boundaries, empathy and respect, authority and duty, stigma, and truth-telling and communication.

Within each section, several essays describe teaching considerations or techniques, often focusing on a specific story or novel. For example, in “A Novel Approach to Narrative Based Professionalism: The Literature Classroom in Medical Education” by Pamela Schaff and Erika Wright (p. 72), the authors describe how Pat Barker’s novel Regeneration stimulates discussion of doctor-patient antipathy, doctor-patient intimacy, and interprofessional communication. From Reading to Healing also includes the full text of many stories relevant to the essays; for example, “Toenails” (Richard Selzer),“The Most Beautiful Woman in Town” (Charles Bukowski), “The Speckled Rash” (Mikhail Bulgakov), “The Death of Ivan Ilyich” (Leo Tolstoy), “The Use of Force” (William Carlos Williams) and “The Birthmark” (Nathaniel Hawthorne).

In addition to stories and novels, From Reading to Healing presents essays on teaching with film, religious literature, and even comics, cf. “Assisting Students in the Creation of a Class Oath Using Comics,” by Michael Redinger, Cheryl Dickson, and Elizabeth Lorbeer (p. 217)

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Confessions of an English Opium-Eater: Being an Extract from the Life of a Scholar

De Quincey , Thomas

Last Updated: May-28-2019

Teagarden, J. Russell

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Thomas De Quincey was a British writer—essayist, mostly—during the first half of the nineteenth century. He is best known for writing about his personal experiences with opium, which appeared in two sequential issues of London Magazine in 1921, and then published as this book in 1822. He would later write a sequel, and later still a more elaborated version of the original.

De Quincey’s first encounter with opium was in 1804 when he was eighteen years old. Opium was freely available then and was often consumed for recreational purposes. De Quincey was not seeking it for pleasure, at first. Based on a friend’s recommendation, after suffering excruciating facial and head pain for twenty days, he tried opium to relieve the pain. De Quincey acquired opium in the form of an elixir (laudanum) from a local druggist (“unconscious minister of celestial pleasures!”) (p. 43). The book covers the subsequent eighteen years of his opium use, though he would use it until the end of his life at age seventy-four.

De Quincey refers to opium as the “dread agent of unimaginable pleasure and pain” (p. 42). The book is organized accordingly. After describing his early years of straitened circumstances including near starvation, he divides the book into sections on “the pleasures of opium,” and “the pains of opium.”

De Quincey found the pleasures of opium with his first dose in 1804, pleasures that extended past the pain relief it provided.

But I took it: – and in an hour, oh! Heavens! what a revulsion! what an upheaving, from its lowest depths, of the inner spirit! what an apocalypse of the world within me! That my pains had vanished, was now a trifle in my eyes: – this negative effect was swallowed up in the immensity of those positive effects which had opened before me – in the abyss of divine enjoyment thus suddenly revealed. (p. 44)

For more of these pleasures, De Quincey drank laudanum over the next ten years at a frequency he describes variously as “occasionally,” “at intervals,” and “seldom…more than once in three weeks: this was usually on a Tuesday or a Saturday night.” He learned that some time was needed between “several acts of indulgence in order to renew the pleasurable sensations,” a property of opioids pharmacologists would later call tolerance (pp. 8-9).

De Quincey eventually became familiar with the pains of opium when the return of severe intestinal pains he suffered in his “boyish days” made it necessary that his laudanum use become “an article of daily diet,” (p. 9) because he “could no longer resist,” and “could not have done otherwise” (p. 59). The amount of opium De Quincey consumed as a result was enough to cause severe reactions when he tried to reduce his dose: “It is a state of unutterable irritation of the stomach… accompanied by intense perspirations, and feeling such as I shall not attempt to describe without more space at my command” (p. 71).

Though relieving pain was the initial reason for his daily diet of laudanum, for most of the next eight years, avoiding withdrawal reactions became the more important motivation for De Quincey’s laudanum intake: “it was solely by the tortures connected with the attempt to abjure it, that it kept its hold” (p. 86). He eventually knew he had to quit when he realized: “I must die if I continued the opium: I determined, therefore, if that should be required, to die in throwing if off” (p. 87). Throwing off opium was not easy for De Quincey as he experienced “torments of a man passing out of one mode of existence into another,” (p. 88) but he claims he was ultimately successful.

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The Great Believers

Makkai, Rebecca

Last Updated: May-26-2019

Trachtman, Howard

Primary Category: Literature / Fiction

Genre: Novel

Summary:

The subject of Rebecca Makkai's engaging book, The Great Believers is the AIDS epidemic. Her narrative unfolds in two eras separated by 40 years. It opens in the mid-1980s with the funeral of Nico, one of HIV’s first victims when the epidemic exploded in the gay community living in Chicago. In the second chapter, the time frame abruptly switches to 2015 and introduces Fiona Marcus, Nico’s sister. She was part of the gay scene in Chicago in the 1980s, grew attached to the men, and provided the care and comfort that many of the families were unable to offer when their sons were dying of AIDS.

In the earlier time period, Makkai's main protagonist is Yale Tishman, the director of development at an art gallery affiliated with a prominent unnamed university in the Chicago area. He is working with a small group of colleagues, including a young man uncertain of his gender identity, to acquire a batch of paintings from Nora Marcus Lerner. She is an elderly woman who happens to be Fiona and Nico’s aunt. and who was part of the avant-garde social circle surrounding the modern artists living in Paris in the wake of the First World War. As Nora reaches the end of her long life, she desperately wants to preserve the artistic memory of her lover who died as a young man. As Yale works to finalize the acquisition, his relationship with his lover, Charlie, falters and triggers a series of untimely deaths in Yale’s close circle of friends. Ultimately, Yale also succumbs to the HIV virus.

In 2015, Fiona has engaged a private investigator to locate her estranged daughter, Claire, who is living in Paris and has rebuffed numerous efforts in the past to reconnect with her mother. Ultimately, Fiona is able to move past the intensity of her caregiving role to gay men in the 1980s and to reconnect and reestablish a tentative relationship with her daughter. There is hope that with a renewed bond with her daughter she can restore a reason to live that will be as strong as the work she did to support and sustain her gay friends through the agonies of AIDS.

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