Showing 321 - 330 of 912 annotations tagged with the keyword "Patient Experience"

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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Migraine

Pastan, Linda

Last Updated: Nov-19-2009
Annotated by:
Ratzan, Richard M.

Primary Category: Literature / Poetry

Genre: Poem

Summary:

The poet describes the suffering associated with a migraine headache.

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Words Like Fate and Pain

Fiser, Karen

Last Updated: Nov-19-2009
Annotated by:
Davis, Cortney

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

This volume is divided into four parts, each containing powerful and fairly short poems--rarely longer than one page and often less than 30 lines--that share the author's experience of disability. The four sections unfold the struggle of coming-to-terms with disability organically, beginning with the body and concluding with the will to survive and transcend the physical.

Section One considers the role of fate or luck (The Short Song of What Befalls--see this database, "Words Like Fate and Pain"), the burden of chronic pain ("Night Shift," Pointing to the Place of the Pain--see this database, "Slow Freight"), the desire to escape physical limitations ("Not Down Here," "What Comes Next"), and the difficulty of adjusting to an altered self image ("What Happened to You?" "Protect Yourself From This").

The sections that follow offer poems that attempt to understand disability intellectually and viscerally ("Levels of Being," "Loving the Clay,"), to look beyond the suffering self to the suffering of others ("Beginning to Write," "The Word 'Class' Should Not Appear in the Poem"), and finally to love and accept what's given ("What Keeps Me Here," "Dreaming the Tree of Life").

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Notes on Emphysema

Carruth, Hayden

Last Updated: Nov-19-2009
Annotated by:
Davis, Cortney

Primary Category: Literature / Poetry

Genre: Poem

Summary:

This long poem is divided into 48 segments, each a meditation on the narrator's struggle to live with emphysema. Some sections consist of only one line (10: "How alone can you get?"), others are more lengthy; for example, section 37 is a primer on inhalers, "puffers, " how to use them and what happens if you don't.

Every observation in this poem is from a literate poet's point of view, one here focused on emphysema, and so the breath, the body, and the daily rituals of living become primary. The whole world breathes--even the computer, which "sighs" when it is turned off (section 34)--but the poet cannot catch his breath. Reading the poem, even silently, the reader becomes short of breath too, physically aware of the patient's limitations.

In section 24, Carruth laments that he cannot even negotiate the 500 yards up hill to his son's house; in section 29, he writes that even the dog seems "reproachful" when his owner is unable "to play" and throw the blue ball. The accumulated limitations of these taken-for-granted actions makes the author both "pissed and sorry" for the dog, for the man, for the world.

In spite of the physical rebellion of the lungs, the narrator continues to smoke, as many patients with chronic obstructive pulmonary disease (COPD) do, adding another dimension to this poem. Even facing death, the patient's addiction to tobacco is overwhelming; in section 11, the narrator says, "Now I am dying. Now I am afraid. Please give me a cigarette." In section 45, Carruth laments this "nonsense of misery."

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Summary:

One day in the 1920’s, a newspaper reporter walked into the laboratory of Russian psychologist A. R. Luria and asked him to test his memory, which he recently had been told was unusual. It was not unusual. It was uniquely and astoundingly retentive. Luria gave him very long strings of numbers, words, nonsense syllables and could not detect any limit to his ability to recall them, generally without mistake, even years later. (Luria studied S., as he identifies him, for thirty years.)

Luria discovers that the man had some interesting characteristics to his memory. He experienced synesthesia, i.e., the blending of sensations: a voice was a "crumbly, yellow voice." (p.24) S.’s memory was highly eidetic, i.e., visual, a characteristic not unique to him but which he used as a technique to memorize lists and details. (He had become a performing mnemonist.) It was also auditory. He had trouble remembering a word if its sound did not fit its meaning. The remainder of the section on his memory involves fascinating aspects of his having to learn how to forget and his methods of problem solving.

The remainder of the book is equally interesting since it relates the epiphenomena of S.’s prodigious memory: how he mentally saw everything in his past memory; how he was virtually paralyzed when it came to understanding poetry since metaphorical thinking was almost impossible for him, a mnemonist who lived in a world of unique particulars! As Luria wrote, "S. found that when he tried to read poetry the obstacles to his understanding were overwhelming: each expression gave rise to an image; this, in turn, would conflict with another image that had been evoked." (p. 120)

S. could control his vital signs by his memory and, last but not least, this human experiment of nature had such a vivid imagination that, probably more than the most creative of us, he engaged in "magical thinking": "To me there’s no great difference between the things I imagine and what exists in reality. Often, if I imagine something is going to happen, it does. Take the time I began arguing with a friend that the cashier in the store was sure to give me too much change. I imagined it to myself in detail, and she actually did give me too much--change of 20 rubles instead of 10. Of course I realize it’s just chance, coincidence, but deep down I also think it’s because I saw it that way." (p. 146)

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The Ninth Life of Louis Drax

Jensen, Liz

Last Updated: Nov-19-2009
Annotated by:
Ratzan, Richard M.

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Louis Drax is a nine-year-old boy living in France with his stay at home mother and Air France pilot father. Such an apparently normal family description is the merest tissue of appearances. The father is probably an alcoholic and unfaithful; the son is "accident-prone" (a nearly fatal episode of SIDS at two weeks of age, a near fatal electrocution at age 6 after falling on the tracks of the métro in Lyon; salmonella, tetanus, botulism, meningitis, etc. [or, as Louis is fond of saying, "blah, blah, blah."]) and the mother has issues that only emerge as one becomes more deeply involved in what is a mystery story.

Like Gabriel Garcia Marquez’s A Chronicle of a Death Foretold, or Janet Lewis’s superb The Trial of Søren Qvist, one knows the ending early on (page 16 in Louis Drax), but not the details. The why and the how are the stuff of the novelist’s art in all three books.

With premonition of more danger, Louis goes on a family picnic (see below for the author’s biographical basis for this tale) and winds up at the bottom of a ravine, dead. Drowned and dead. A few hours later, in the morgue, he is found to be alive. Comatose and in a persistent vegetative state but alive. He is therefore transferred to the care of a neurologist specializing in comatose patients at the Clinique de l’Horizon (formerly l’Hôpital des Incurables).

It is here that the mystery unfolds. The questions are: How did Louis end up at the bottom of the ravine? Did his father, now missing, push him as his distraught mother alleges? What role does the clearly neurotic mother play in this tragedy? And who exactly is Louis Drax? Lastly, how do the mysterious letters allegedly from him, written while still in a coma, come to be?

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The Echo Maker

Powers, Richard

Last Updated: Nov-19-2009
Annotated by:
Ratzan, Richard M.

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Mark Schluter, a 27 year old beef-processing plant worker, becomes involved in a car crash outside Kearney, Nebraska, the locus of this novel. The car crash---on February 2, 2002, a date that the author wishes to impress the reader as one that seems too numerically mystical (02/02/02) to be co-incidental--clearly has mysterious elements about it since it occurred far outside town on desolate flat country roads and amidst the tire tracks of another car. Too, just after Mark is hospitalized, there appears an undecipherable note of anonymous provenance:

I am No One
but Tonight on North Line Road
GOD led me to you
so You could Live
and bring back someone else.

Mark has an initially troublesome route to recovery, including a temporary ventriculostomy to relieve the pressure in his head. Meanwhile his only sibling, Karin, 31, rushes to his side from Sioux City, a move that becomes permanent and costs her her job. Mark eventually awakens but with an unusual mis-identification syndrome, called the Capgras syndrome (more commonly encountered in patients with psychiatric condition), in which the patient fails to recognize those closest to him as such. For a Capgras patient, there is a disconnect between the visual ability to recognize their faces and emotional response to them as close relatives or friends. He recognizes the visual similarity but considers the significant other an impostor.

This rupture in the usual see-sister's-face-acknowledge-as-sister apparently occurs, in the Capgras syndrome, in connections between one's "primitive" or "reptilian" brain, including the amygdala, and the cortex. Much is made of this failure of neuronal circuits to connect, and reminds one of the parable in His Brother's Keeper (see database) about the Chinese Emperor and the failure of the transmission of a message to explain the pathophysiology of amyotrophic lateral sclerosis. As Karin remembers the neurologic explanation, " 'His amygdala, she remembered. His amygdala can't talk with his cortex" [original italics] (80). This amygdala-cortex dichotomy becomes, in behavioral terms, feeling versus reason. As discussed by the two neurologists involved in Mark's case, "But no emotional ratification. Getting all the associations for a face without that gut feeling of familiarity. Pushed to a choice, cortex has to defer to amygdala"; "So it's not what you think you feel that wins out, it's what you feel you think" (131).

Out of desperation, Karin emails a request to Gerald Weber, a famous cognitive neurologist-author modeled primarily after Oliver Sacks but with a little A. R. Luria, whose "To find the soul it is necessary to lose it" is the epigraph of the novel. From the time Weber meets Mark and Karin, the book becomes an intricately entangled design of various metaphysical threads all of which, directly or indirectly, revolve around Mark's syndrome and identity--in fact the identity of all the characters. Karin becomes involved-- re-involved-- with two men from her earlier days in Kearney, Robert Karsh, a developer, and Daniel Riegel, a conservationist. Later the two men become ideologically more opposed than ever when Karsh tries to develop the annual nesting grounds of the cranes, Grus canadensis, who return to Kearney, thousands of them, every February. Barbara Gillespie, a guardian angel to Mark at the extended care rehab center, and Gerald Weber, until then a man happily married to a prototypically liberal intellectual woman, Sylvie Bolan, become romantically drawn to each other. Weber's own doubts about his work and his public image after unprecedentedly critical reviews of his latest book torment him and lead to concerns about his own identity as a physician who may be using, rather than trying to understand, his patients.

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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:
Mathiasen, Helle

Primary Category: Literature / Nonfiction

Genre: Collection (Essays)

Summary:

Subitled, Invisible Wounds of War. Psychological and Cognitive Injuries, Their Consequences, and Services to Assist Recovery, this monograph features 27 contributing researchers. Published by the RAND Corporation, it is funded by a grant from the Iraq Afghanistan Deployment Impact Fund. The study was conducted under the joint auspices of the Center for Military Health Policy Research, a RAND Health Center, and the Forces and Resources Policy Center of the National Security Research Division of the RAND Corporation.
 
The work deserves our full attention as it delineates and explains the economic, human, medical, political, public health, and social consequences of injuries suffered by returning veterans of US involvement in 8 years of continuous conflict in Afghanistan and Iraq. The introduction defines the three kinds of invisible wounds affecting thousands of the 1.64 million American troops deployed in Operation Enduring Freedom (Afghanistan) and Operation Iraqi Freedom (Iraq) since 2001. These combat related injuries are post traumatic stress disorder (PTSD), major depression, and traumatic brain injury (TBI). Upwards of 26% of returning troops may have mental health concerns, including drug and alcohol dependency, homelessness, and suicide.

The monograph analyses numerous studies of these issues, both governmental and non-governmental, and RAND has conducted its own study. The data collection is recent: from April 2007 to January 2008. RAND estimates that approximately 300.000 persons currently suffer from PTSD or major depression; in addition, 320,000 veterans may have experienced TBI during deployment.

The recommendations include evidence based care at the VA level, the state and community level, and on site in Afghanistan and Iraq. Adequate care would pay for itself and save money in the long run by improving productivity and reducing medical and mortality costs for members of the US armed forces.

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