Salt in My Soul: An Unfinished Life

Smith, Mallory

Last Updated: Aug-16-2019

Shafer, Audrey

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Mallory Smith died of complications following a double-lung transplant for cystic fibrosis (CF). She was twenty-five years old and kept an extensive journal on her computer for 10 years. Salt in My Soul: An Unfinished Life is her memoir, edited by her mother, Diane Shader Smith, from the 2,500 pages of notes, observations and reflections which Mallory Smith wrote. The title refers to the intimate relationship of salt imbalance in cystic fibrosis, and the fact that Mallory felt her most well while swimming in the sea. Diagnosed at age three, she spent much of her days and nights treating the disease with medication, nutrition, chest percussive treatments, breathing treatments, adequate sleep, and aggressive treatment of infections. Unfortunately, while still a child her lungs were colonized with B. cepacia, a resistant bacteria ‘superbug’ which makes transplantation highly risky and hence leads to most centers to not accept CF patients onto their wait lists. Ultimately, University of Pittsburgh does accept Mallory as a transplant candidate, although her health insurance puts up every road block possible to her receiving care.

Mallory Smith was extraordinarily accomplished – she graduated from Stanford University Phi Beta Kappa, and became an editor and freelance writer. She was also deeply engaged with life and others; she was grateful for her loving, devoted family, and she developed close, fierce friendships within the CF community, among classmates, and eventually, she fell in love.

She resists being called ‘an inspiration.’ She writes: “I’m not an inspiration. I’m just a person, grounded in compassion, striving to achieve empathy and wanting to make my way with goodness and grace.” (p. 171) She marvels at the miracle of life: “Our existence is the result of stars exploding, solar systems forming. Our Earth having an environment hospitable to life, and then, finally, millions of highly improvable events accumulating over millions of years to bring us, a capable and conscious bag of stardust, to the here and now.” (p 111) Her memoir is a story of living and dying from CF, but it is also an inside look at the brief life of young gifted writer.

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That Good Night: Life and Medicine in the Eleventh Hour

Puri, Sunita

Last Updated: Aug-13-2019

Shafer, Audrey

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Sunita Puri, a palliative care attending physician, educates and illuminates the reader about how conversations about end of life goals can improve quality of life, not just quality of dying, in her memoir, That Good Night: Life and Medicine in the Eleventh Hour. Thirteen chapters are grouped in three parts: Between Two Dark Skies, The Unlearning and Infinity in a Seashell. The arc of the book follows Puri as she is raised by her anesthesiologist mother and engineer father – both immigrants from India – Puri’s decision to enter medical school, her choice of internal medicine residency followed by a palliative care fellowship in northern California and her return to practice in southern California where her parents and brother live. Besides learning about the process of becoming a palliative care physician, the reader also learns of Puri’s family’s deep ties to spirituality and faith, the importance of family and extended family, and her family’s cultural practices.

Puri writes extensively about patients and their families, as well as her mentors and colleagues. She plans and rehearses the difficult conversations she will have with patients in the same way a proceduralist plans and prepares for an intervention. She provides extensive quotes from conversations and analyzes where conversations go awry and how she decides whether to proceed down a planned path or improvise based on the language and body language of her patients and their family members. We visit patients in clinic, in hospital, and at home, and at all stages of Puri’s training and initial practice. Some of the most charged conversations are with colleagues, who, for example, ask for a palliative care consultation but want to limit that conversation to a single focus, such as pain management. We also learn of the differences between palliative care and hospice, and the particularly fraught associations many have with the latter term. She feels insulted when patients or families vent by calling her names such as “Grim Reaper” or “human killer” (p. 232), but understands that such words mean that more education is needed to help people understand what a palliative care physician can do.

As a mediator of extremely difficult conversations, where emotions such as shame, guilt, fear, helplessness and anger can swirl with love and gratitude, Puri finds the grace to acknowledge that all such emotions are part of the feelings of loss and impending grief, and to beautifully render her reflections on these intimacies: “Yet although I am seeing a patient because I have agreed that they are approaching death, if I do my job well, what I actually encounter is the full force of their lives.” (p. 206) Having met many dying people she notes: “Dying hasn’t bestowed upon them the meaning of life or turned them into embodiments of enlightenment; dying is simply a continuation of living this messy, temporary life, humanly and imperfectly.” (pp 221-2)

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The Faraway Nearby

Solnit, Rebecca

Last Updated: Aug-09-2019

Teagarden, J. Russell

Primary Category: Literature / Nonfiction

Genre: Collection (Short Stories)

Summary:

Solnit dares the reader to categorize her book. Autobiography, memoir, travelogue, story collection, history, meditations, and pathography could fit. Common to all the categories and subjects covered is storytelling. “It’s all in the telling… and to be without a story is to be lost in the vastness of the world,” Solnit says in book’s opening. Storytelling can bring what is geographically faraway emotionally nearby.

Solnit’s first and last stories lay the foundation for the others in between. Both center on the hundred pounds of apricots she received from one of her brothers who was getting their mother’s house ready for sale when dementia made it impossible for her to live alone. Solnit saw “the apricots as an exhortation to tell of the time that began with their arrival, and so the stories concern the time from when they arrived onward” (p. 240). Solnit considers this time when her mother’s dementia is worsening, an “emergency,” but in this instance, she conceives emergency as “an accelerated phase of life, a point at which change is begotten, a little like a crisis” (p. 250). The book to her, she says, is “a history of an emergency and the stories that kept me company then” (p. 249).

The topics covered during this emergency are many and varied, related and unrelated. Just some of them are: her mother’s dementia, her cancer, her friend’s cancer, leprosy, Che Guevara as physician and revolutionary, Iceland, the Arctic, Mary Shelley’s Frankenstein, Buddhism, and cannibalism. In general terms, illness, pain, empathy, fairytales, and reading and writing are considered. Some of these topics are intertwined and some stand alone.

The book is organized into thirteen numbered “stories.” Each has a one-word title. The titles of the first five stories are the same as the last five in reverse order, i.e., the first and last stories are both called “Apricots.” They are arranged on the table of contents page to form the shape of a bell curve that has been rotated 90 degrees with the apex of the rotated curve comprising the stories, “Wound,” Knot,” and “Unwound.” Threads run through the stories, and perhaps Solnit is telling us the story threads running through the first six stories are wound into a knot and then unwound in stories running through the last six of them. This structure may be more grist for people interested in how literature can be structured than for people interested in the insights into illness experiences literary nonfiction can provide.

Not among the list of stories is one that is printed as a single line running along the bottom of each page in the book. It’s a story is about stories running along side the other stories. In an interview printed in the 8 August 2013 issue of Harper’s Magazine, Solnit said she used this form in part to invite“readers to decide how to read a book that has two narratives running parallel to each other; the thread can be read before, during, or after.”

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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

Survivors

Pratt, Arthur

Last Updated: Jul-19-2019

Thomas, Shawn

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

For much of the western world, the Ebola crisis came and went without much fanfare. Perhaps we were jolted by the initial news stories, taken aback by the images from affected areas, and slightly unnerved by the travel advisories as we entered security lines at the airport. But for the most part, the Ebola outbreak was an abstract crisis affecting people on the other side of the world, multiple continents away. The closest that most Americans came to Ebola was to hear in the news about the four diagnosed cases in Texas and New York City. It is safe to say that most of the world remains unaware of the depths of this crisis in the West African hotspot countries of Liberia, Sierra Leone, New Guinea, and Nigeria.

Arthur Pratt is a Sierra Leonian pastor and filmmaker, and he witnessed firsthand the invisible enemy that threatened to destroy his country, the communities, and the families that lived there. Despite the human cost that this disease extracted from the West African people, Pratt was inspired by how the people in Sierra Leone rose up to defend their country from a viral invasion that was attacking “the fabric of what it means to be African.” He felt it necessary to tell the world the story of Sierra Leone’s unsung heroes, and so he created a documentary titled Survivors, which focused on the work done by the ambulance drivers and nurses, interwoven with personal stories of children, mothers, fathers, and communities touched by the disease. Survivors gets up close and personal to the 21-month battle against Ebola in West Africa, and shows how the common people of Sierra Leone risked everything to come together and fight back against an existential threat.

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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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