Showing 1 - 10 of 274 annotations tagged with the keyword "Illness Narrative/Pathography"

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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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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Annotated by:
Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

Esmé Weijun Wang is a novelist who has been diagnosed with Schizoaffective Disorder.  The Collected Schizophrenias is a book of personal essays that was the 2016 winner of the Graywolf Press Nonfiction Prize. 

A precocious young person on a track to success, Wang experiences a manic episode at Yale that leads to her first hospitalization.  After a second hospitalization, her college washes its hands of her.  Hitting roadblocks time and time again requires her to rebuild her life over and over.  This is not a conventional chronological autobiography but rather essays that provide different approaches to the author’s experience of mental illness.  The plural “schizophrenias” of the title encompasses the whole schizophrenic spectrum of disorders.  As Wang explains, her own diagnosis is “the fucked-up offspring of manic depression and schizophrenia” (p. 10).  

In an essay entitled “High-Functioning” we learn how the author, having been a fashion editor, knows how to pass for normal: “My makeup routine is minimal and consistent.  I can dress and daub when psychotic and when not psychotic.  I do it with zeal when manic.  If I’m depressed, I skip everything but the lipstick.  If I skip the lipstick, that means I haven’t even made it to the bathroom mirror” (p.44).  

Later, in “The Choice of Children,” volunteering at a camp for bipolar children makes Wang think about what it would be like to inflict her diagnosis on her own offspring.  In “Reality, On-Screen” she attempts to convey the sensation of decompensating to psychosis.  And in “Yale Will Not Save You” she considers the failure of universities to accommodate mentally ill students. 

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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:
Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Biography

Summary:

In That Jealous Demon, My Wretched Health (subtitled “Disease, Death and Composers”), Jonathan Noble, a retired surgeon gives us the medical and psychiatric history of seventy classical music composers. Chapters are organized by illness, ranging from cancer to syphilis to alcoholism.  Famous composers such as Schubert and Shostakovich predominate, but many lesser-known composers, ranging from Jeremiah Clarke to Gerald Finzi, are also included.  

Mozart is one composer whose cause of death has long been the subject of controversy, and the various theories are comprehensively explored here. However, the author goes even further, developing a detailed medical case study of the composer beginning in childhood.  He examines the toll that Leopold Mozart’s exploitation took on his prodigy son’s constitution, what Wolfgang’s appearance in the surviving portraits has to say about his general health, and even whether he may have had Tourette’s Syndrome. Finally, the author ties all of this together, methodically refuting or confirming each diagnosis, offering far deeper analysis than one would expect to find in a standard biography.  

Another example, the case of Tchaikovsky, reads like a veritable whodunit. The composer’s activities during the last two months of his life are scrutinized, with the likely causes of death systematically disproven or confirmed.  

A list of composers who suffered accidental or violent deaths provides some surprises. You will learn that Lully accidentally stabbed himself with his conductor’s baton, and that Alkan may have been crushed to death by a bookcase upon pulling his Talmud off a shelf.

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Summary:

In 2006, Emergency medicine trainee, Damon, and his wife, Trisha, have two boys, Thai (age 4) and Callum (age 2.5).  All is well in their lives until Callum begins vomiting for no apparent reason.  He is found to have medulloblastoma, an aggressive brain tumour, for which the only possible hope for a cure comes from surgery and six cycles of ever more arduous chemotherapy with stem cell recovery at Toronto’s Hospital for Sick Children. The little family moves to Toronto and commits to supporting Callum as best they can, ensuring that he is never alone even during his long weeks of reverse isolation. They also try to keep Thai nearby, involved and aware, with the help of a local school and grandparents. But Callum dies during the last cycle of treatment.  

Saddened, exhausted, and bereaved, Damon and Trisha go back to their home town and try to (re)construct their lives, slowly returning to studies and work. They find meaning in creating tangible and intangible memorials to their lost son, and they find purpose in the more difficult task of moving forward, never losing the pain of grief. They adopt a little girl. Damon knows that Callum is always with him and the experience of his illness and death has dramatically infused his work as a physician.

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A Mind Unraveled: A Memoir

Eichenwald, Kurt

Last Updated: Jan-02-2019
Annotated by:
Miksanek, Tony

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Kurt Eichenwald shares his experiences living with epilepsy in an electrifying narrative. Beginning with staring spells as a child and then later on generalized convulsions with loss of consciousness, he experiences as many as 4 seizures a week between the ages of 18 to 30. After that, the seizures become milder and less frequent. Coincidentally, his wife, father, and older brother are physicians and his mother a nurse.

Eichenwald describes his encounters with multiple neurologists, the best of them being Dr. Naarden. Unfortunately, other health professionals are portrayed as incompetent, careless, lacking empathy, or even unscrupulous. Multiple mishaps with prescribed anticonvulsant medications are chronicled – drug side effects, toxic levels of medicines, and a bout of bone marrow suppression. He suffers broken ribs, cuts and wounds, burns, and is even blanketed by deep snow due to seizures.

Eichenwald acknowledges the toll that epilepsy exacts on roommates, friends, and family. He admits to lots of fear and guilt. At one point, he seriously considers suicide by overdosing. Everyday life is hardly ever ordinary: “Now I was scared every day, checking where I stood for dangers, wondering when consciousness would disappear” (p157). A large section of his account details the discrimination he encounters at Swarthmore College in Pennsylvania in the early 1980’s. The school dismisses him because of his uncontrolled epilepsy. He successfully fights their decision and returns to graduate. Obtaining and holding a job is complicated by his illness, but Eichenwald becomes a journalist who works for the New York Times.




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Annotated by:
Schilling, Carol

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

Genre: Memoir

Summary:

Devan Stahl’s opening essay in this unusual book explores the tension between her lived experience of being diagnosed with multiple sclerosis (MS) in her twenties and her physicians’ biomedical descriptions of it. While that tension is a familiar theme in patients’ narratives, Stahl’s approach is fresh and generously collaborative. Stahl, a bioethicist, focuses her brief narrative on her uneasy hours inside MRI machines and with clinicians who read the images. Stahl encouraged her sister, artist Darian Goldin Stahl, to transmute her physicians’ diagnostic tools into printmaker’s works, which bring personal meaning and sisterly solidarity to Devan’s experience. Devan then invited Darian and four humanities scholars to write reflective commentaries on her narrative, Darian’s images, and the commentaries themselves. The result is a richly layered, multi-vocal reflection on what Devan Stahl has accepted as “the dark gift of bodily frailty” (xxvii).

Darian Stahl’s prints were inspired by the drawings of Renaissance anatomist Andreas Vesalius that the sisters admired. Unlike their modern counterparts, the older images placed bodies in humanly built and natural environments that are rich with metaphor and theological implications. Darian’s photographic silkscreened and stone lithographic prints, some of which accompany her essay, imaginatively relocate her sister’s MRI scans in domestic spaces that suggest both Devan’s present state: her spine captured in a glass kitchen jar. And her future: a ghostly figure (actually Darian’s) at the base of the staircase that Devan will someday have trouble climbing. Making art became an act of caregiving.

The scholarly essays affirm that a single diagnosis can set in motion processes of interpretation in the context of family, community, academic discipline, and culture. But in this context, they too are expressions of caring for Devan. Literary and health humanities scholar Therese Jones writes that Stahl’s narrative “testifies to [her] hope of transcending or at least managing the alienation and incoherence of a disrupted life” (49). Literature professor Kirsten Ostherr links the Stahls’ collaborative projects with the patient empowerment movement, where creative expression offers one way to resist “the technomediated patient narrative” (71). Two of Devan Stahl’s theological studies professors contribute the remaining essays. Ellen T. Armour believes that the Stahls’ projects suggest the value of engaging the medical humanities in pastoral practice and vice versa, especially to challenge biomedicine’s claims to mastery and its “disavowal of vulnerability” (89). Jeffrey P. Bishop, who is also a physician, understands a patient’s position within the asymmetric power of medicine. Yet he also resists “the power ontology that animates so much of the West” (102). He offers instead a vision of accepting “the dark gift” of the fragility of the body, which can be both humbling and liberating (105). Viewing one of Darian’s images, he writes, “calls me out of myself” (105).

In Devan Stahl’s final reflection on her colleagues’ commentaries and her sister’s art, she concludes that sharing her experience has revealed both a “power in submission” and her responsibility to other patients (112). Her discovery leads her to a “new image” of herself and acceptance of Bishop’s observation: “Flesh calls the self into question” (115, 103).

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Annotated by:
Davis, Cortney

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

When poet and writer Amy Nawrocki was nineteen years old, a college student returning home after her freshmen year, she suffered a sudden and mysterious illness.  She was transformed, in an eye-blink, from an active young woman to a bed bound and comatose patient.  "There is nothing to embellish--I got sick, I fell into a deep sleep, I woke up.  No fairy tale" (page 3).  Months of her life went missing: this brief and lovely memoir is her attempt to reconstruct those hours and those experiences.  She begins with reflections on journal entries written before her illness began, giving the reader (and herself) a persona, a personality, a living breathing young woman who already writes, who lives in her head, and who always felt "totally comfortable" in her body (page 3). Then we lose her, as she lost herself.  She re-visions the story of her months of suffering and recovering from encephalitic coma through the various medical records and family memories she gathers in order to reconstruct the missing pieces of her life. "The coma girl has detached herself from me. I have to dream her up or rely on what others saw, eye witnesses who had to detach themselves in a different way" (page 21). Coming back into life after a serious illness is a strange and often prolonged journey.  Nawrocki writes, "Waking up took as long as sleeping" (page 33).  And in this waking up time, she begins to see who she was (or how she looked to others) during those blank months. "The images still frighten me. My face was a mess; hair cropped short, puffed up without styling, ragged, like I just woke up. My eyes seemed empty but weirdly wild" (page 35). During her recovery, the author begins journaling again. "In my college notes, I focused on the art of reflection; after the illness, I wanted mainly to observe" (page 42).  And in recovery, she begins to build memories once again. She lists her recollections during weeks in rehab, and she remembers "the final trip home, a cake decorated with blue and yellow icing waiting for me" (page 45).

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The Center Cannot Hold

Wells, Kenneth

Last Updated: Jul-31-2018
Annotated by:
Glass, Guy

Primary Category: Performing Arts / Theater

Genre: Theater

Summary:

This is an opera based on Elyn R. Saks’s best-selling book The Center Cannot Hold.  Subtitled “My Journey Through Madness,” the memoir recounts the author’s struggle with schizophrenia.  Here, Saks has collaborated with composer/psychiatrist Kenneth B. Wells on the opera’s libretto.  

The librettists utilize the device of having three different singers portray Elyn.  One manifestation, the “Lady of the Charts,” represents her when psychotic.  The others are Elyn as a law student and the present day Professor Saks as a law professor.  Another dramatic device involves the use of a chorus to embody the protagonist’s schizophrenic delusions.  At the height of her paranoia, as Elyn sings Beethoven’s 5th Symphony in an effort to keep herself together, the chorus recalls the Symphony’s opening notes by singing “Elyn must die.”  

The opera opens with Elyn as Professor Saks reflecting on her childhood. Even then there were signs of the illness that, to quote a famous poem by William Butler Yeats, ensures “the center cannot hold” in Elyn’s life. During the first act, Elyn, a Yale law student, becomes psychotic in front of her friends and is hospitalized. In a Connecticut hospital she is put in restraints and treated by various mental health professionals. She imagines she hears demons threatening to kill her.  Elyn’s diagnosis and condition overwhelm her parents, who have been called by the hospital.  

In the second act, Elyn works to reintegrate her fragmented mind.  She is determined to get back to law school.  She is released from the hospital. She finds an antipsychotic medication, with fewer side effects, that she can live with. She resolves to devote her career to mental health law.  At the conclusion of the opera, Elyn anticipates graduation.  She has been instrumental in winning a class action suit against the use of restraints in psychiatric patients.  Her parents, friends and doctors proclaim their pride in her accomplishments.

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