Showing 1 - 10 of 286 annotations tagged with the keyword "Illness Narrative/Pathography"

Annotated by:
Glass, Guy

Primary Category: Literature / Nonfiction — Secondary Category: Literature /

Genre: Biography

Summary:

Maria Callas, the most famous opera singer of the second half of the 20th century, continues to exert a fascination.  Critical consensus is that Callas fused a technically flawed voice with an extraordinary stage presence to create something unique.  More than forty years after her death, Callas’s recordings continue to be best-sellers, and her life has inspired dozens of biographies.  Prima Donna: The Psychology of Maria Callas appears in Oxford University Press’s Inner Lives series, which consists of psychobiographies of artists that make use of current psychological theory and research.  The focus of author Paul Wink, a psychology professor at Wellesley College, is adult development and narcissism.  

The facts of Callas’s life are well known. She is born in New York City to an ill-matched Greek immigrant couple.  Her father is barely able to keep a roof over their heads.  Her mother Litza struggles to get over the death of an infant son, requiring hospitalization for a suicide attempt. As the story goes, Litza cannot bring herself to look at her new daughter for the first four days of her life.  Litza, who imagines herself in a lofty social class, disdains their neighbors, and thus Maria is discouraged from playing with other children.  When Maria is discovered to have talent, Litza exploits her.   

As Litza’s marriage deteriorates, she brings Maria back to Greece.  With the onset of World War II, they endure hardships.  Yet, improbably, the overweight and awkward Maria shows a streak of brilliance.  She is the hardest working student at the conservatory, quickly outpacing her peers.  On Maria’s first day in Italy, where she gets her first big break, she meets a businessman who is more than twice her age.  Within weeks they are a couple.  For a time, she allows Litza to share in her success, even buying her a fur coat.  But soon, in response to a request for money, she tells her mother to “jump out of the window or drown yourself” (p. 78), and then never speaks to her again.  

Maria loses weight and transforms into the operatic counterpart to Audrey Hepburn.  She enjoys one operatic triumph after another. Nevertheless, she becomes as famous for her bellicose and imperious behavior as for her singing.  She kicks a colleague in the shin after a performance so she can take a solo bow. She is publicly fired from the Metropolitan Opera.  She incurs scandal by suddenly canceling a performance at which the president of Italy is present.   

When the fabulously wealthy Aristotle Onassis courts her, Callas unceremoniously rids herself of her husband.  Soon, her technical flaws catch up with her, and her career dwindles away.  Meanwhile, Onassis goes for a bigger trophy: Jacqueline Kennedy, and Callas is humiliated in the press.  Voiceless, she exiles herself to Paris with her two poodles, develops an addiction to sleeping pills, and dies a decade later, alone.  

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Annotated by:
Grogan, Katie

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

In her memoir Ask Me About My Uterus, science writer Abby Norman tells two intertwined stories: one about her fraught relationship with her own chronically ill body, and another about the fraught relationship between women and medicine. Norman is a sophomore at her dream college when a sudden, unrelenting abdominal pain sends her to the emergency room—and into a revolving door of medical appointments for years to come. Thus begins her diagnostic odyssey, protracted by an infuriating obstacle: not only must she endure excruciating pain, she must convince doctors that it’s real.

Norman is eventually diagnosed with endometriosis but has several frustrating clinical encounters along the way. Her symptoms are repeatedly minimized or disbelieved by doctors of various identities and specialties. One actually says the words that have long been inferred to Norman and so many women before her: “This is all in your head.” Finally receiving an accurate diagnosis provides some measure of clarity about Norman’s pain but little in the way of relief. She learns firsthand that medical knowledge about endometriosis is desperately lacking—a troubling realization given its prevalence. A commonly cited statistic suggests one in ten women have endometriosis but, as Norman notes, most studies have excluded marginalized communities, so the incidence is likely higher. Norman ultimately becomes an expert on the condition, setting her on a path to advocate for herself and others with endometriosis—and to write about it.  

The memoir is organized chronologically, beginning with the onset of Norman’s symptoms about seven years prior to the book’s publication, with occasional flashbacks that draw connections between her current crisis and her difficult childhood. She opens several chapters with descriptions of famous case studies and experiments, situating her own experience within a long and disturbing lineage of women dismissed, misdiagnosed, and mistreated by medical professionals.  

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Hidden Valley Road

Kolker, Robert

Last Updated: Jun-15-2020
Annotated by:
Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Biography

Summary:

The Galvins of Hidden Valley Road, just outside Colorado Springs, appear to be the kind of wholesome, all-American family that others might envy.  The tragic fact is that six of the twelve children go on to develop schizophrenia, a situation that is practically unprecedented.  In Hidden Valley Road, journalist Robert Kolker gives us the tale of the deterioration of six afflicted children and the traumatization of six healthy ones in an improbable, bucolic setting.  As one after the other reaches young adulthood in this “funhouse-mirror reflection of the American dream” (p. xxi) and inexorably succumbs to madness, the family struggles to cope.   

In their search for answers, the Galvins’s extraordinary circumstances come to the attention of researchers.  Ultimately, although there is no cure, the family makes a contribution through their genes to our understanding of schizophrenia, as a mutation is discovered that is shared by the afflicted children.   

Hidden Valley Road follows the travails of this “multiplex schizophrenia” family over so many years that there is a sea change in our understanding of the disease’s origins.  At first, it is taken for granted to be the result of a faulty upbringing at the hands of “schizophrenogenic” parents.  Later, biological explanations prevail.  Finally, a more balanced view is attained, with nature and nurture each thought to play a role.  

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Summary:

A dramatic prologue depicts Joan Kleinman screaming and hitting her husband Arthur in bed. She is ill with Alzheimer’s disease and does not, for that moment, recognize him. The following chapters provide a long flashback, beginning with Arthur’s family background, his youth as a tough street kid in Brooklyn, his medical education, and his marriage to Joan. We learn of their work in China, travels, and professional success. Arthur gradually realizes that the US health care system has become “a rapidly fragmenting and increasingly chaotic and dysfunctional non-system” (p. 126). Further, he sees a reductive focus on patients as mere biological entities, ignoring their personal, familial, and cultural natures. As a result, “Caregiving in medicine has gone from bad to worse.”

Joan suffers from an atypical kind of Alzheimer’s that increased over “that dismal ten years” (p. 156) with Arthur providing care to her, at cost to himself. There is no home health aide, no team approach with doctors, indeed no wider interest in her care other than the state of her diseased brain. Kleinman vividly describes the toll on her and on him.

Kleinman is aware of the privilege he has as a Harvard doctor, well known for his psychiatric work, his teaching and writing, and his wealth—in contrast to other patients and families. Some patients go bankrupt from medical bills.

Visits to nursing homes reveal a wide range of social conditions, contexts, and levels of care; the best have a sense of “moral care” (p. 200). Joan’s final days are hard. Supportive family members agree to her living will and healthcare proxy for morphine pain control only. She dies, apparently “at peace” (p. 232).

In the last pages Kleinman introduces the notion of “soul” as “essential human interactions” (p. 238). He discusses some of the limits of medicine (see paradoxes below) but also praises local efforts to improve humane care, such as team approaches, uses of narrative medicine, and medical/health humanities programs.  

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The Edge of Every Day

Sardy, Marin

Last Updated: Jan-25-2020
Annotated by:
Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The Edge of Every Day is the memoir of a woman who comes from a “multiplex” family, in which schizophrenia is manifested in successive generations.  

The book consists of a series of essays.  Some, on topics ranging from gymnastics to building altars, were first published independently and do not appear (at least at first glance) to be linked. The choppy effect this produces speaks to the disorganized thinking that psychotic persons experience.  Other essays propel the tragic narrative of family members slipping into psychosis. At the age of ten, the author Marin Sardy, watches as the “shapeless thief” of schizophrenia steals her mother’s personality away.  Later, as she reaches her thirties, she witnesses her younger brother succumb to an even more pernicious illness.   

Despite Sardy’s mother’s conspicuous symptoms, (she advises her daughter to move to Pluto and informs her that her father has been swept away in a tsunami and replaced by another man), she functions just well enough to avoid being compelled to accept treatment. Thus, no one can stop her from going through a large inheritance and becoming destitute.  

Sardy’s brother Tom suffers his first psychotic break in his 20’s and then rapidly deteriorates.  He repeatedly “cheeks” his meds and falls through the cracks of Anchorage’s mental health system. The author and her family scour the streets, hoping to lure him inside for a shower or hot meal. As the weather worsens, they can only hope he will land in prison if it means not being exposed to the Alaskan elements.  Ultimately, the young man, who once sailed through college with A’s, commits suicide in the bathroom of a psychiatric facility. 

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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 second full-length collection), divided into four sections.  The author's first book, "The Ninety-Third Name of God" , introduced us to her family and especially to her diagnosis--inflammatory breast cancer--the disease discovered in 2004 during her pregnancy, the disease that claimed that claimed her life in August, 2018, when she was forty-nine-years old.  This second collection continues Silver's illness narrative, poems that might serve as a journal of her journey through treatment, anger, despair, determination, and faith.

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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:
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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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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