Showing 1 - 10 of 533 annotations tagged with the keyword "Disability"

Pain Studies

Olstein, Lisa

Last Updated: Jun-10-2020

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

“All pain is simple” reads the opening sentence of this unusual and striking book. The next sentence reads, “And all pain is complex.” These two sentences foreshadow many puzzles to come: how do we live between chaos and control? Why can’t doctors figure migraines out? Why don’t they agree on a treatment for a particular patient? Olstein is a poet and long-term migraine sufferer. Her book offers many observations about pain, and her attempts to define it, describe it, and plumb its nature through language. There is no linear narrative or argument, rather 38 very brief chapters—usually three to five pages—and many of these could be read in a different order. 

Olstein uses the terms “studies” and “research” for her efforts to capture pain, to explain it, and to understand the cause(s) of her disease. Her mother had migraines; women have three times the rate of men; she had a childhood head injury. Do any of these factors explain her disease? No. And what treatments work? She lists some 50 drugs/supplements/activities she has tried to deal with her illness. None of these have worked in a definitive way. Further, she lists some 30 side-effects she has experienced from these various treatments (pp. 74-75). She has had multiple migraines, one lasting three months, but she also says drugs keep pain at bay: “mostly the medication does work” (p 90).

Some disparate figures help her focus her inquiry: Joan of Arc (possibly a migraine sufferer), the TV character Dr. Gregory House (racked with chronic pain, he is an opioid addict), Virginia Woolf, and Hildegard of Bingen (possibly a migraine sufferer). Also ancient writers such as Lucretius, Pliny the Elder, and Antiphon the Sophist, and contemporaries from different fields, such as mathematics and neurology. Also she refers to poems by Emily Dickinson, Elizabeth Bishop, and C. D. Wright, as well as to an article on gendered literature by Siri Hustvedt. 

Largely written during a writing residency, these are incisive notes plus associations as she plumbs not only her illness but also her responses—as poet, as thinker, as searcher for healing—to the bizarre, long, difficult path of her migraines. (We have only brief mentions of her personal and family life.) While she refers to some scientific literature, it is more often that her insights come from artistic fields such a literature, sculpture, drama, and popular music. She writes that her work with a therapist over a dozen years has been helpful to her.

There is no conclusion…nor can there be. Her illness, treatment, and writing are all works in progress. Patients are different; doctors are different; science evolves. In their many forms and presentations, migraines are mysterious and complex, as this book creatively and powerfully shows. Olstein writes, “The beauty, the love, is in what we perceive” (p. 144). We may take this observation as the guiding principle for the book.   

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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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See You On the Other Side

Wong, Matthew

Last Updated: Nov-04-2019
Annotated by:
Lam, MD, Gretl

Primary Category: Visual Arts / Painting/Drawing

Genre: Painting

Summary:

A tiny figure sits alone, looking back at a building in the distance. The building looks like a one-story home, the rudimentary kind you learn to draw in kindergarten, with a triangle roof and a blocky rectangular body, embedded with smaller rectangles to signify the door and windows. The figure in the foreground and the house in the background are the same size, and this scale emphasizes the depth of the landscape – the figure and the house are separated by a vast white space. And yet they are clearly connected, not only because the house is centered in the figure’s line of vision, but also because they share the same teal colors.  

The house sits at the foot of a spring-green mountain, painted over with long cascading strokes of darker green, giving the impression of a verdant and peaceful setting. Contrast this to the brown ridge where the figure is sitting, huddled in a long sleeve jacket, hands tucked into pockets. The ridge is barren except for a single tree that is mostly bare branches with sparse pale-pink leaves.

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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:

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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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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Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The Scar is a powerful, thoughtful, and moving book, part memoir about the author’s illness across some 30 years, part history of depression and its treatment and part essay to evoke cultural and personal values about sickness, suffering, health, and death. Cregan, a gifted stylist herself, draws on literature that deals with human suffering, mortality, and wisdom.  She frankly describes her sorrows and hopes, the death of her baby, her attempts to kill herself, and her survival today with many blessings.   
           
The title refers to a scar on her neck, a result of her effort to cut her throat with a piece of glass so that she would die. This attempt, in a hospital, reflects the depth of her illness and the failure of her caregivers to prevent it. Her book explores the complexity and variety of mental patients and the range of medical responses—some useful, some not—to  treat them. Writing as a survivor, she draws on her journal, hospital records, emails, interviews, and more; she is part journalist, detective, archivist, and forensic pathologist—as if doing an autopsy on the suicide she attempted.
 
Ch. 1
What Happened describes the birth and immediate death of her daughter Anna and her descent into depression and initial hospitalization.

Ch. 2
What Happened Next discusses mental hospitals and her perceptions of being a patient in one. A dramatic paragraph describes her cutting her throat (p. 51).

Ch. 3
How to Save a Life presents electroconvulsive therapy (ECT), from the jarring images of “One Flew Over the Cuckoo’s Nest” to her own experience of some 17 treatments; she reports that these helped in recovery.

Ch. 4
The Paradise of Bedlams gives a history of mental hospitals. She is hospitalized three months, “a prisoner,” in her term.

Ch. 5
Where Do the Dead Go? explores the dilemmas of the living as they mourn the deaths of people they love, including approaches from Judaism and Christianity. Mary has nightmares about her lost baby. She discusses Freud, Rilke, T. S. Eliot and others. She buries Anna’s ashes.

Ch. 6
Early Blues discusses modern attempts of science and the pharmaceutical industry to create drugs for mental illnesses, with influences from psychodynamic and biological concepts.

Ch. 7
The Promise of Prozac discusses that famous (notorious?) drug; she takes it on and off while working on her PhD, then other drugs as they became available.

Ch. 8
No Feeling Is Final sums up many themes.  She’s in her late 30s, remarried, and trying to conceive. After IVF, she’s pregnant. Baby Luke is born. She understands that the scar on her neck has an analogue with Odysseus’ scar on his leg: a symbol of survival through hard, even desperate times, for her a “double trauma: the loss of my child, the loss of myself”  (p. 243).  

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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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Annotated by:
Kohn, Martin

Primary Category: Literature / Plays

Genre: Play

Summary:

First published in 1898, Chekhov’s “A Doctor’s Visit”  has been ably adapted as a short play by physician-playwright, Guy Fredrick Glass. In addition to the original characters, in his adaptation Glass has added a new character, a medical student, Boris, as a foil and interlocutor for the work’s main character, Dr. Korolyov. Staging directions and scene setting also add dramatic dimensions to the story, as do elaborations of conversations including  comedic encounters with the governess, Christina Dmitryevna, and a display of "compassionate solidarity" (see Coulehan annotation ) with the doctor’s patient, Liza. The primary theme of the story stays true in this adaptation—Korolyov’s impressions of the patient viewed from a cold objective stance are changed as he develops personal insights into the social and political nature of her (and his) malaise.

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