Showing 101 - 110 of 258 annotations tagged with the keyword "Illness Narrative/Pathography"

Annotated by:
Willms, Janice

Primary Category: Literature / Nonfiction

Genre: History

Summary:

This is the wrenching history of the development, evolution, and eventual obsolescence of the leper colony established in 1866 on the isolated and only sometimes accessible peninsula on the Hawaiian island of Molokai--and the lives of the people who were exiled there to die over a period of more than 100 years. The tale opens with the declaration by the Board of Health that all persons proven (or strongly suggested) to be afflicted with leprosy be exiled immediately to the site on Molokai.

The author dramatically describes the selection and separation of the exiles from their families and the tortuous and sometimes deadly sea voyage to their primitive new homeland. Mixed with the public policy and the individuals who made and implemented it, are the descriptions of the hospital in Honolulu where diagnoses and dispositions were rendered, as well as the poignant personal stories of the "detainees." The reader follows the colony from the arrival of its first 13 patients in 1866, through its peak population of 1,144, to its residual 28 in 2003.

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Limbo: A Memoir

Ansay, A.

Last Updated: Nov-21-2009
Annotated by:
Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Novelist A. Manette Ansay's beautifully crafted, emotionally complex memoir describes living with a chronic painful, debilitating condition that began mysteriously and has continued to elude both diagnosis and remedy. Without a clear inciting event or a healing resolution to frame her narrative, Ansay structures her memoir as a series of agile reflections in which scenes from the past and present dissolve into one another, mimicking the distortions of time that chronic illness issues. "Time doesn't pass," she writes. "It bleeds, blurs, washes me along" (27).

Ansay's narrative opens when, at age 36, she has returned to visit the somber rural Wisconsin town of her childhood in a body that has lost its "unselfconscious sense of movement" (10). She recounts how she insisted on beginning piano lessons when she was 7, persevering through years of pain and increasing fatigue that ultimately caused her to withdraw from the Peabody Conservatory of Music in Baltimore. The withdrawal ended her dedicated labor to become a performer. Instead, Ansay navigated medical systems in an urgent, but elusive search for a diagnosis.

Multiple Sclerosis, Chronic Fatigue Syndrome, and Lupus could not be verified. Neither could the possibility that playing the piano with nearly manic vigor (in her teachers' view) damaged her body. Ansay's matter-of-fact description of playing Hurricane with her friends in her grandparents' apple orchard-trucks full of pesticides doused the children as they hid in the branches-suggests another still unproven etiology.

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Summary:

Poets on Prozac contains sixteen essays written by poets about their individual struggles with a variety of psychiatric disorders. The editor, physician and poet Richard Berlin, has gathered these essays in order to examine, and shatter, the long-standing notion that madness, particularly madness in poets, enhances creativity---we need only think of the myths surrounding writers such as Sylvia Plath and Dylan Thomas to understand how the relationship between madness and creativity might foster both fear and longing in novice writers.

In his informative and comprehensive introduction, Berlin poses these, and other, questions: "Do poets need to be mentally ill to produce great work? What is the influence of substance use/abuse? Does a person have to be 'crazy' to write good poetry? What do poets themselves define as crucial elements in their creative process?" (p. 2). He goes on to site current evidence that madness actually impedes creativity, as well as evidence that "some forms of mental illness may enhance, or at least coexist, with creativity" (pp. 4-5); he reviews the findings of researchers who have looked at "The Myth of Inspiration" and "The Myth of Very Special Talent" in creative persons (pp 6-7).

But it is in the wonderful essays themselves that we take a privileged peek into the lives, the often tortured lives, of successful poets (Berlin only considered the essays of poets who had published at least one book). Reading the essays is somewhat like eavesdropping on the therapy sessions of highly articulate and self-aware patients. Clearly Berlin has created a safe place for these writers to look again at their creative lives and how those lives intertwine with, and sometimes have been overgrown by, mental illness. All the essays, happily, come to a place of resolution; the writers find, in various degrees, that understanding or relieving their emotional distress results in the possibility of increased creativity. Along the way, they give us writing alive with metaphors, images and intelligent musings on art, poetry, life and suffering.

In the first essay, "Dark Gifts," Gwyneth Lewis writes about her depression: "I became Woman in a Dressing Gown. At my worst, the duvet on my bed looked like a body bag and I was the corpse inside it" (p. 13). Finally she concludes, "I've learned that depression is one of the most reliable guardians of my life as a poet. It's like a fuse in a house with suspect wiring" (p. 22). In his essay, Andrew Hudgins describes cortisone psychosis this way: "I was a fire station in which the alarm bells seldom stopped clanging and the firemen were exhausted and indifferent" (p. 163). In "The Desire to Think Clearly," J. D. Smith says, "Being a poet in despair does not necessarily make one a poet of despair" (p. 23). As most of the poets do, Denise Duhamel uses examples of poems within her essay to demonstrate how her illness, in this case bulimia, variously inhibited or influenced her writing. The rawness of illness shows up, again and again, in her ability to be brave and resolute in her poems: "I'm still working it out, as they say, as therapists say, as my friends say, / as I guess I'm saying now in this poem" (p. 37).

Many of the poets approach their illness histories with wry humor or pointed irony. Caterina Eppolito states that "Poetic form is an anorexic form of writing. So instead of restricting calories, I was restricting words" (p. 118). Ren Powell asks, "Maybe when it's all over I can ask my children if they think the days of dancing in the kitchen were worth the days I spent shut away in the bedroom" (p. 52). Powell, like most of the authors in this anthology, honors hard work at the craft as the measure of success, and says, "If I have any success at all as a writer it is as much despite my disorder as because of it" (p. 57). Other writers admit wondering, sometimes, if their writing success might be due to their disorders. Jesse Millner writes, "After all, wasn't it the melancholy that led me to write?" (p. 67). Most writers agree that abusing substances did not enhance but sidetracked their poetic energies, while prescribed medications often, as Jack Coulehan says, helped: "The obsessive traits softened, so I felt free to approach life in a more flexible manner. Despite this new experience of freedom, my productivity did not suffer; in fact, it increased" (p. 101).

The chemical basis for some mental disorders is acknowledged in many of the essays. In her discussion of postpartum depression, Martha Silano notes, "I'd simply woken up in a foreign country without a map, without a dictionary, with no way to understand this strange place" (p. 142). Silano, like others in this collection, found that once the chemical imbalance was corrected, something good happened to the writing---she moved from writing about her own personal experience to writing that reached beyond her fears: "Now I was writing poems with a more universal, all-encompassing vision" (p. 146). Liza Porter says it this way: "Voice comes from safety. Silence becomes words. The truth can be told" (p. 153). But the downside of medication is admitted as well. Chase Twitchell laments the loss of "metaphor-making," and compares it---in quite a fine metaphor---to someone turning "off the spigot" (p. 176). "It takes longer and requires far more doggedness than it did before medications" (p. 176). But medications also give many of these poets what Vanessa Haley names "the emotional insight and stamina to write" (p. 76). If these excellent essays are any indication, they are, and will continue to be, writing extraordinarily well.

 

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Summary:

This volume belongs in the category of cross-cultural studies of medicine and the humanities. Its main audience is scholars of nineteenth-century American psychiatry and culture. The author divides his study into six chapters, each with a topic, including the simultaneous emergence of nineteenth-century public debate about improving the treatment of insanity and the movement to abolish slavery; cultural activities in asylums directed toward humanizing the patients; bardolatry in British and American medical circles; discussions of Emerson, Hawthorne, Poe, and Melville in the context of their literary and personal relationship with madness; a chapter on captivity narratives and popular novels by former female and male patients; and an epilogue.

Unlike today, "In mid-nineteenth-century America, the condition of the mentally ill seemed to demand-and to a large degree received-national attention and the full creative energy of a group of dedicated reformers" (p. 2). Reformers linked the emancipation of slaves with curing the delusions of the insane. Slaves and the mentally ill had in common deprivation of their civil liberties; however, the difference was that white mental patients could be expected to grow up eventually, whereas black slaves would always remain children, and hence could not be trusted with the right to vote, own property, or sign contracts.Some causes of insanity were deemed to be the individual's reaction to the stress of modern life, too much freedom and choice, religious fervor, masturbation, or excessive study. In their aggressive attempts to remake patients into proper gentlemen and ladies, the new asylums promoted cultural activities such as reading selected texts, theater performances and writing.

Most asylums housed males and females in approximately equal numbers; cultural activities for females stressed piety, fashion, and domestic activity while men could comment on politics, the temperance movement, and opposition to women's rights. Reiss refers to the French model of using cultural activities in asylums, f.ex., Philippe Pinel's staging of plays to educate patients, and Marquis de Sade's theater performances at Charenton. He ends with a discussion of patient narratives that depict some horrific abuses tolerated in nineteenth-century asylums; the degree of these abuses is familiar to us from One Flew Over the Cuckoo's Nest (see film annotation).

The work includes a few illustrations, the most important being an engraving from a painting by Tony Robert-Fleury titled: Pinel Freeing the Insane (1876). (Yale University). Philippe Pinel (1745-1826) was a French pioneer in the humane treatment of mentally ill patients. A Director of Bicêtre Hospital in Paris, he is depicted as a heroic physician, liberating, mostly female, patients there. However, scholars have shown that only 10 of the 270 patients were chained, and that Pinel '"accepted the traditional use of chains to restrain the violent insane as a matter of course"' (p. 160). Reiss's point is that the revolutionary nature of Pinel's treatment of the insane has been exaggerated.

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Annotated by:
Henderson, Schuyler

Primary Category: Literature / Nonfiction

Genre: History

Summary:

A memoir of raising a daughter with autism and an anthropological and historical investigation into autism around the world, Unstrange Minds: Remapping the World of Autism draws upon Grinker's own experiences, those of families of children with autism in the United States, Korea, India and South Africa, and a variety of experts and caregivers.  Putting the story of autism into a historical, anthropological, and personal context, the book deals with hot-button topics - the question of an autism epidemic, of etiology, of treatments - with a careful, patient approach.

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Annotated by:
Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

On February 16, 2003, readers of The New York Times Magazine came upon Harriet McBryde Johnson's cover story, "Unspeakable Conversations," and a remarkable image of her gazing directly at those readers from her power wheelchair.  Her story memorably recounts her uncompromising, yet civil disagreements with Utilitarian philosopher Peter Singer about nothing less than the value of her life.  That narrative essay is one of eleven stories published in Too Late to Die Young.

They make the case that philosophers and others have incorrectly imagined Johnson's life, and the lives of others with chronic and disabling conditions, as burdensome and not worth living.  Born with a degenerative neuromuscular disease, Johnson grew up in a family that appreciated her; she practiced law in her native Charleston, South Carolina, and became nationally known for her disability activism.  Still, she encountered a world filled with people who feared her condition.  Fear, she found, led them to assume that disability inevitably brings suffering and to use that assumption to justify acts that would prevent her birth.

Her stories, conversationally and often humorously, ask readers to question why they burden some people with calls to justify their lives or to assure the world that they experience pleasure.  Each story recounts an episode that reveals the pleasures Johnson experienced as an active agent in the world.  She ran for a county office, represented her state at a Democratic National Convention, stood her ground for free speech and against Secret Service tactics when President Reagan spoke at her law school, protested Labor Day Week-end telethons, traveled to Cuba to cover a disability conference for a magazine, advocated for clients in employment discrimination cases, and made many, many friends.

Feeling exhilarated rather than confined by her wheelchair, she bears witness, perhaps unexpectedly, to another pleasure:  "the simple delight of movement."  She writes of maneuvering around Charleston, "I zoom through chaotic swarms of tourists, zip around the raggedy sidewalks . . . loop around every inconveniently placed garbage can, with maximum speed and also with style and grace" (252).  But her stories also describe her wheelchair stumbling over incompatible surfaces, one of which sends her to an emergency room far from home.  This episode also brings moments of grace, this time with the ER staff.  After learning who she is, they Google her on-line profiles and writings.  Delighting in their patient with unpredictable needs, they place print-outs of her electronic portfolio in her chart.

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Summary:

This collection of stories offers a sidelong view of medicine from the perspective of a thoughtful, experienced doctor of internal medicine at a teaching institution (UCSF) in an urban setting that brings a wide variety of types of patients to his door.  In a context of evident respect and admiration for even the quirkiest of them, Watts admits to the kinds of personal responses most have been trained to hide-laughter, anger, bewilderment, frustration, empathetic sorrow.  The cases he recounts include several whose inexplicabilities ultimately require action based as much on intuition as on science.  He includes several stories of illness among his own family and friends, and makes it clear in others how his professional decisions affect his home life and his own state of mind.  

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Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Triggered in part by a trip to the Galápagos Islands, the author interweaves two parallel narratives: Darwin's "journey toward evolution" along with the related work of Alfred Russel Wallace; and the author's own journey through life, partially disabled and dependent on the specially fitted shoes that help him to walk.  Together these two narratives develop "all I have come to understand about chance and change, fear and transformation, variation and cultural context, ideas about the body that question the definition and existence of difference in all of our lives" (xvii).

Born with an unnamed congenital condition in which his fibulae are absent along with other lower limb "abnormalities," Fries underwent five major reconstructive surgeries as a child, but after those, what helped him most were special shoes that were fitted to his special body, assisting him to walk.  As an adult, however, he begins to experience back pain and knee problems.  The memoir relates, both in flashback, and in the present day, Fries's quest for a proper pair of shoes that will help him avoid yet another surgery -- the shoes he has been wearing are 20 years old and no longer do the job.  We meet Dr. Mendotti, who treated him like a peculiar specimen and offered a pharmacologic way out of his pain; shoemaker Eneslow, in a dingy Union Square office, whose shoes not only fit Fries well, but were festive in appearance -- "I felt both normal and special" (17); other practitioners of orthotics who try but fail to construct shoes that relieve Fries's pain, and finally, the gifted, patient orthoticist, Tom Coburn, who persists until he is able to provide shoes that work.  The shoes have been adapted for Fries's body, just as man has constructed adaptations that allow him to live in a variety of climates and circumstances.  Conversely, Fries, convinced he "can adapt to the circumstances in which my body places me (169)," draws from Darwin, whom he quotes: "individual differences are highly important for us, as they afford materials for natural selection to accumulate" (169).
 
Darwinian connections are invoked throughout the narrative.  The peculiar configuration of Fries's feet and shoes help him to ascend a series of mountain ladders while his partner, Ian -- who usually has to assist Fries with such physical maneuvers -- suddenly becomes fearful of the height and exposure;  back problems might have developed even without his congenital abnormalities because evolution of the capacity to walk upright included the tendency toward back pain; the role of chance in natural selection and the role of chance in the physical fact of congenital conditions; the positive role that his partner Ian's attention deficit disorder (ADD) could have played in the days of hunter-gatherers and the cultural context in which ADD is now considered to be "abnormal."
 
Fries discusses his fears -- both rational and irrational -- as well as his awareness of stigma, difference, and sameness.  The context of these discussions is usually a reminiscence about vacations in far-flung countries (Thailand, the Galápagos, Bali, Alaska, the Canadian Rockies) and physically challenging domestic locales (a Colorado River raft trip, the Beehive Mountain in Acadia National Park).  He  occasionally brings into the discussion his homosexuality, especially as his physical deformity affected sexual encounters.  The relationship between Fries and Ian is woven throughout the memoir as one of understanding, mutual need and benefit.  As the memoir ends, Fries worries about the likelihood he will need a wheelchair, but is at the same time gathering confidence in his ability to ride the Easy Flyer bicycle that Ian has discovered at the local bike shop.

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Annotated by:
Davis, Cortney

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Author Jennifer Culkin has been involved, for all of her nursing career, in high stakes, heart stopping, instant-decision-making areas of critical care.  After years working in Neonatal Intensive Care, she became a flight nurse--and giving intensive care to trauma victims while trying to maintain balance and sterile technique in a wind-buffeted helicopter has to be one of the most difficult tasks a nurse might undertake.  Her memoir, A Final Arc of Sky, opens with such a scene.  The patient, Doug, is soon crashing, and the nursing team, Jennifer and her partner, have to make a series of tough decisions (pp. 8-12).  From this scene on, the action rarely wavers.  And although Culkin keeps the pace moving, she is not always, or even most often, telling us about similar traumas.  She deftly weaves her personal narrative--husband and sons and dying parents--in and out of scenes from her nursing career, braiding the plot lines of her life in chapters both moving and compelling. 

In those chapters that deal with the often dangerous helicopter transports Culkin has flown, we learn (and we feel) just what it's like to be a flight nurse crammed in-between patient and helicopter door, juggling instruments that too often slip to the floor and trying to save patients that too often want to die.  In those pages that deal with family, we are privy to Culkin's internal debate about how to separate family from nursing (what she calls "the great neuronal divide between my work and my life" (p.136), and we see that she sometimes doesn't have much energy left at the end of the day to draw close to those she loves.  Part of what makes this memoir difficult to put down is the persona of the narrator herself: Culkin comes across as an honest, often irreverent risk taker, a woman who likes to ride her bike down dangerous hills at breakneck speed and allows her son to do the same (see chapter six, p. 57); a woman who loves the dangerous drama of flight nursing and doesn't worry about crashing (p. 80)--in fact she enjoys strapping herself "into the eye of a maelstrom" (p. 80). 

This memoir entertains, and it provides a glimpse into how some caregivers not only risk their lives to save the lives of others but also shoulder the responsibility of making split second decisions upon which a patient's life might depend.  And there is a surprise in this memoir, one that I can't too fully divulge because to do so would be to rob potential readers of their own discovery.  Suffice it to say that near the end, Culkin reveals something about her own health, an illness she has fought against in every chapter.  When we learn the details of her own illness narrative, we look again, with new understanding, at her fascinating career and her interactions with her loved ones.   

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Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

In this candid chronicle of what many would call a prolonged depression occasioned in part by her husband's illness and death, Norris, a popular memoirist and essayist, seeks carefully to distinguish the psychological or psycho-medical category of "depression" from the spiritual state of "acedia" or, more bluntly, "sloth," in its oldest and most precise sense.  In doing so she raises important questions about widespread and often imprecise use of categories derived from clinical psychology, an imprecision that may muddy the distinction between spiritual and psychopathological experience.

"Acedia" she defines as a failure of will, signifying a need for spiritual guidance and prayer, whereas "depression" requires medical treatment.  Going beyond the confessional, Norris suggests that acedia may be an endemic condition among middle-class Americans, over-busy but spiritually slothful.  The book is loosely organized, often characteristically lyrical, and more invitational than diagnostic.  Her purpose, finally, seems to be to inspire readers to embrace simple life-giving spiritual disciplines like reading the Psalms as a stay against excessive self-preoccupation and actual depression as well as spiritual depletion.  

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