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Marrow: A Love Story

Lesser, Elizabeth

Last Updated: Sep-25-2019
Annotated by:
Burke, Katherine

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Elizabeth (Liz) Lesser receives a call from her sister Maggie, telling her that she has had a relapse of lymphoma. Maggie’s best chance of survival is a bone marrow transplant; of the three other Lesser sisters, Liz is Maggie’s perfect match. In an effort to bolster the stem cells’ chance to be successfully grown, harvested, and transplanted, Maggie and Liz embark on a process to do a “soul marrow transplant;” with the help of a therapist and through many difficult conversations, the sisters resolve sibling rivalries, explore their family history, and forgive each other for old assumptions and judgments. Through the journey they learn to live with vulnerability and authenticity, and as the poet Rumi writes, meet each other in the field “beyond ideas of wrongdoing and rightdoing.”  

Eventually, Maggie’s body begins to succumb to the cancer, and the entire family prepares for her inevitable death. Maggie, an artist who works with dried and pressed botanicals, strives to complete a formidable exhibition entitled “Gone to Seed,” an exploration of life and mortality. Liz seeks forgiveness and reconciliation with their other two sisters. Finally, Maggie and her family wrestle with the decision to end standard treatment, begin palliative care, and consider physician aid in dying.




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Annotated by:
Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

In Ladysitting, novelist and memoirist Lorene Carey writes candidly and reflectively about the year and a half she cared for her century-old, ferociously independent paternal grandmother. The experience became a critical moment for personal and familial discovery. Carey’s intensive caregiving began when Nana Jackson could not be discharged from the hospital to the house where, for decades, she had lived by herself. Growing up, Carey enjoyed enchanted weekends of indulgence in Nana’s sunlit suburban home in South Jersey, a respite from her family’s life in urban West Philadelphia. Partly in gratitude for those weekends, partly from a sense of duty, Carey made physical, emotional, and spiritual space for Nana in the home she shared with her husband, a minister, and their teenage daughter. Along with Carey’s own artistic, community, and professional commitments, she also maintained the property management business that her grandmother ran until her confinement. Carey’s decision to become Nana’s primary caregiver brought momentary satisfactions along with overwhelming frustrations.  

Carey’s narrative agilely transitions between present encounters with Nana Jackson and the past: her own past and her African- and Caribbean-American relations’. By doing so, Carey tries to make sense of the complicated woman in her care, herself, and relationships within her family. She discovered generations of mostly “free-people-of-color,” several financially and politically successful, whose ambitions confronted Reconstruction, the Jim Crow South, the migration north, and the “lynchings [that] made sure that every gain would be paid for in blood and money, if not by [her family], then by other black people, somewhere.” How might that history, Carey asks, help her understand her family’s generations of divorces (including her own), alcoholism, deceptions, estrangements, and the elusive efforts of one generation to build on the accomplishments of the others?   

It took Carey ten years to research and reflect on that question. And then to write, hoping “to clear away the rage, uncover the simple grief, stored in the muscles that seized up then and cannot remember how they were before, and to convince us both, Nana and myself, that she has left this plane. And to forgive.”  

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Annotated by:
Ratzan, Richard M.

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Strange Relation is a memoir of the terminal illness of George Edwards, a composer and professor of music at Columbia University, written by Rachel Hadas, his wife, a well- known poet and herself a professor of English at Rutgers University. Hadas begins with the insidious onset of Edwards's dementia, which is eventually diagnosed as frontotemporal dementia, a slow neurodegenerative disease characterized by a progressive paucity - and then absence - of communication, especially speech. She then continues with their meetings with physicians, especially neurologists, social workers, support groups and eventually nursing home personnel, recording, often in the form of her poems, her thoughts and reactions at the time.

The book consists of short chapters, more or less chronological, with occasional flashbacks to earlier periods in her life or their marriage. In addition to her poems, there are ubiquitous references to literature, many of them familiar, as well as not so familiar illness narratives by patients and relatives, especially those involving dementia and bereavement. George died in 2011, the year of the publication of this book, after 33 years of marriage to Ms. Hadas.




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Annotated by:
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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Annotated by:
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
Annotated by:
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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Annotated by:
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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Annotated by:
Davis, Cortney

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

There are 46 poems in this volume (the author's first full-length collection), divided into three parts--the poems in the second section are in memory of women who have died of inflammatory breast cancer, the same disease that claimed the life of the author in August, 2018, when she was forty-nine-years old.  Diagnosed in 2004 during her pregnancy, Anya waited until after her son Noah was born to begin cancer treatment.  These poems, published in 2010, begin in images of her domestic life and her family, move forward to her cancer diagnosis (p. 17: "Biopsy"), and progress to examine, in poems that balance beauty and pain, what it is like to live with the knowledge of early death.  This awareness imparts a crystalline honesty and urgency to every poem. 

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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
Annotated by:
Galbo, 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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