Showing 1 - 10 of 701 annotations tagged with the keyword "Illness and the Family"

The Farewell

Wang, Lulu

Last Updated: Aug-19-2019
Annotated by:
Jiang, Joshua

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

In The Farewell, we follow Billi, a young Asian-American woman, as she takes an unplanned trip from New York to Changchun, China, to visit her grandmother—perhaps for the last time. Billi has just found out that her grandmother (Nai Nai) has lung cancer, stage IV. The doctor gives her three months to live. As troubling as such a diagnosis already is, the situation is further complicated by the family’s choice to lie about the truth of Nai Nai’s illness to her. Now, Billi’s family gathers to see Nai Nai under the pretense of a wedding, but the festivities can barely conceal a heartfelt and heart-wrenching struggle over familial responsibility, filial piety, and whether Nai Nai deserves to know.

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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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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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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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Annotated by:
Perkins, Sam

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

 In Strange Relation, Rachel Hadas, poet, teacher and classicist, recounts the years just short of a decade of her husband’s descent – retreat is the word she’d prefer – into dementia. Although no definitive diagnosis emerges for George’s “spooky condition,” frontotemporal dementia possibly with Alzheimer’s disease in the frontal lobe seems the most likely. By Hadas’s reckoning, George’s symptoms began when he was in his late fifties—relatively young for dementia. Diagnosing any form of early onset dementia is extremely difficult, especially if memory loss is not among the symptoms, as was the case with George. Hadas noticed the symptoms — his silences and growing remoteness— and ascribed them to her husband’s loss of interest in life and their marriage. She writes, “Slowly and insidiously your partner changes from the person you married into someone else.” 

The book opens in 2004, just before his diagnosis in 2005 at the age of 61. George Edwards was a successful and celebrated composer of symphonies, chamber works and art songs, as well as a professor of music at Columbia University. Through flash-backs, Hadas fills in a portrait of a happy, mutually supportive marriage of two engaged, successful artists, a life that slowly melted away as George’s disease tightened its grip. She ends with George in a long-term care residence in 2009, the year Strange Relation was published and two years before his death in 2011.  

The core of the book, intertwined with the story of George’s dementia, is Hadas’s account of the comfort she sought and gained from reading and writing prose and poetry. “This ordeal has eloquently reminded me of the sustaining power of literature,” she writes. “These gifts of the imagination,” gave her strength. “They are not sufficient, but they are damn well necessary.”

Over seven decades of reading have given Hadas a vast store of literary references to draw on. George is Mr. Dick from David Copperfield, mentally scattered, shuffling his papers; he is King Lear, losing clarity and dignity and consumed with anger and humiliation as he feels his abilities fade. Like Penelope awaiting Ulysses’ return, Hadas sees herself living with George as “neither wife nor widow,” her husband a physical presence but spiritually gone. When she reads James Merrill’s “Days of 1964,” she identifies with the poet who “has gone so long without loving that I hardly knew what I was thinking.” The poem speaks to her as it captures, “The thirst, the loneliness, the habituation to emotional deprivation that marked the way I was living.”

 A recurrent theme that many will relate to is the loneliness she feels caring for someone who, because of his condition, hardly speaks or expresses emotion. Robert Frost’s “Home Burial” reminds her how quickly friends will turn away from death and illness and “make their way back to life.” Sickness, says Flannery O’Connor, is a country “where there’s no company, where no one can follow.” She sees her life reflected in Philip Larkin’s wry poem about a couple’s estrangement, “Talking in Bed,” – the couple’s growing estrangement is “this unique distance from isolation.” Hadas finds the clarity and the company of these works a huge comfort.

There are moments of uplift, too. When her college-age son, Jonathan, and his friends propose to take George on a two-week getaway of very rustic living in Vermont, she reluctantly agrees, certain that disaster or injury will ensue. The reader is as relieved as Hadas is when all goes off without a hitch. 

A recurrent theme of the book is the importance of the language used to describe a disease and its treatment. Metaphors and similes, of course, are staples of medical caregiving – “they help us see freshly,” says Hadas; they help her step outside the moment and understand George, whom she describes as retreating into a “walled garden” or behind a “frosted window”; his disease is a bath in which he’s immersed and can never escape; it is a malignant fluid his brain is stewing in.

Equally, using the wrong metaphors and similes can cause pain and guilt. A neurologist tells Hadas that she’s feeling depressed because Hadas has moved into a “new house” and is still living out of boxes, still in transition. “Make yourself at home,” the doctor advises, “I don’t think you’ve completely moved in yet.” This only makes Hadas feel inadequate and guilty. “Let’s at least find the right kind of house,” she writes. Caring for a person with dementia, as she sees it, is not a house but a prison in which the family caregiver is the voluntary inmate, “responsible for the daily care of a warden who has mysteriously changed into a ward.” 

By the end of the memoir, George has declined to the point that Hadas can no longer care for him and has found him a residence, which raises a new host of concerns. He fails out of the first home and she finds another. She visits George regularly and experiences a new kind of tethered freedom. Her divided self, composed of the Drudge and the Poet, dusts off their apartment to reclaim it from the associations of George’s illness, hoping to rescue her memories of twenty years of happiness before his illness began to take him. “It became my home in a new and different way.”  

Each phase of her journey is accompanied by poems, twenty-nine in all, that Hadas wrote to understand herself, clarify her feelings, cope with the loss of George. Never was Robert Frost’s dictum regarding the ingredient of a successful poem— “No surprise for the writer, no surprise for the reader” —more pertinent. Along with her reading, Hadas’s poems lead her to insights that comforted and sometimes surprised her—and will do the same for the reader.   

The book ends with George’s birthday party in 2009 at the long-term care residence where he finally settled. He died shortly after the book was published in 2011.   




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The House on Lippincott

Burstow, Bonnie

Last Updated: Apr-03-2019
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Miriam Himmelfarb is the middle of three daughters of holocaust survivors Rachael and Daniel, who are secular Jews born in Europe.  Safe in the house on Lippincott in an immigrant neighborhood of Toronto, Sondra, Miriam and Esther grow up hearing their parents’ nightmare screams every night. They bask in genuine affection and learn to respect the horrific history of their elders whose needs come to dominate their own. Their father angers at the slightest provocation, and every tiny domestic issue is a reminder of Auschwitz. 

These conditions become their own form of trauma. Daniel allows his child-abusing younger brother into the home where he secretly molests Sondra. The girl flees to live on the street in prostitution and addiction. Esther turns to religion and marries within the faith, finding comfort in traditions. Following in the footsteps of her professor mother, Miriam becomes a philosopher. She briefly moves out during her studies to live in the avant-garde Rochdale College, but she is unable to build a life outside the parental home and returns, denying herself independence and love.
The loss of her mother by carefully planned suicide is terrifying.

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Annotated by:
Galbo, Sebastian

Primary Category: Literature / Nonfiction

Genre: Short Story

Summary:

Jolted awake by a ringing telephone, the narrator (assumed to be Mukherjee) listens to his mother give a tearful report of his 83-year-old father’s waning health. Telling her that he will book the next flight from New York to New Delhi, Mukherjee’s mother wavers, regretting that her call now spurs him to purchase expensive airfare. In a tone of knowing sarcasm, Mukherjee writes, “The frugality of her generation had congealed into frank superstition: if I caught a flight now, I might dare the disaster into being.” Arriving in “sweltering, smog-choked Delhi,” Mukherjee joins his mother in a hospital’s I.C.U. A physician himself, Mukherjee notes the facility’s piteously tumbledown conditions, its crumbling floors and exposed utilities, jibing that, if one were to trip on the concrete rubble, “a neurologist would be waiting conveniently for you around the corner.” No doubt accustomed to the comfortable amenities of American hospitals, Mukherjee magnifies the miserable disarray of the Delhi facility—a defective heartrate monitor, a fractured suction catheter, a hospital bed with cracked wheels, a delivery van used as an improvised ambulance. This world, far from New York, is mired in seemingly eternal disrepair: “Delhi had landed upside down. The city was broken. This hospital was broken. My father was broken.”

These would seem to be the smug observations of a dismayed tourist were it not for Mukherjee’s thoughts on the intricate and noiseless machinery of homeostasis, the cohesive force that sustains internal constancy. “There’s a glassy transparency to things around us that work,” he writes, “made visible only when the glass is cracked and fissured. […] To dwell inside a well-functioning machine is to be largely unaware of its functioning.” As Mukherjee witnesses the spiraling decline of his father’s health within a deteriorating, dismally ill-equipped healthcare system, he focuses on the regularities of equilibrium by juxtaposing the homeostasis of healthcare institutions and human bodies. Mukherjee relates a memorable story from his early career when he staffed nightshifts at an urban clinic, where his colleague, an older nurse, stacked oxygen masks, oiled oxygen valves, and arranged beds. He belittled the nurse’s exacting preparations as an “obsessive absurdity” but, when his first patient arrived with an asthma spasm, he realized how critical the clinic’s flawless order was to his life-saving efforts: “The knob of the oxygen turned effortlessly—who would have noticed that it had just been oiled?—and, when I reached for an I.V. line, a butterfly needle, just the right size and calibre, appeared exactly when I needed it so that I could keep my eyes trained on the thin purplish vein in the crook of the elbow.” Had these things not been prepared, had they not been finely tuned for use, had an instrument been misplaced, would Mukherjee’s patient have lived? He experienced an example of institutional homeostasis, conducive to optimum medical care, which facilitated essential processes to occur successfully without mishap.  

Now in the New Delhi hospital, Mukherjee notes that its medical staff has “to settle for a miserable equilibrium. Amid scraps and gaps and shortages, they had managed to stabilize [my father].” He arrives at another stark realization, “I had versed myself in the reasons that my father had ended up in the hospital. It took me longer to ask the opposite question: What had kept my father, for so long, from acute decline?” Recollecting his father’s life at home in between hospitalizations, Mukherjee references a different kind of homeostasis that helped to prolong his life. For example, when his father was unable to go to the local market to haggle for fish and cauliflower, the vendors came to his home for usual business— “The little rituals saved him. They […] restored his dignity, his need for constancy.” Mukherjee accentuates the protean workings of homeostasis, its variegated forms that sustain the patterns of normalcy that give regularity and meaning to human life—indeed, equilibrium is not only an infinitude of minute chemical and biological factors, but familiar ease in a world that one knows and loves. Equilibrium, however rigorously maintained, succumbs to decay. Mukherjee aptly quotes Philip Larkin’s poem, “The Old Fools”: “At death you break up: the bits that were you / Start speeding away from each other for ever / With no one to see.” Mukherjee notes that the experience of his father’s decline was not so much observing him disintegrate into a similar kind of molecular dust, as imaged in Larkin’s verse, as it was his solidity upheld by homeostatic forces, a steady chugging of biological gears that made intricate compromises to sustain his deteriorating body.

After his father emerges from the coma, Mukherjee enlists curious pedestrians to help lift him into a makeshift ambulance. His father’s jostled body resembles a “botched Indian knockoff of an ecstatic Bernini.” The thematic kernel of Mukherjee’s narrative, homeostasis, draws scrutiny not only to the experiences of individual bodies but the systems and institutions that heal them, to the material environments in which fragile bodies are cared for, repaired, and rehabilitated. “The hospitals that work, the ambulances that lift patients smoothly off the ground: we neglect the small revolutions that maintain these functions,” reflects Mukherjee, “but when things fall apart we are suddenly alert to the chasms left behind.”
 

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