Showing 71 - 80 of 987 annotations tagged with the keyword "Suffering"

Songs from the Black Chair

Barber, Charles

Last Updated: Sep-08-2017
Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Subtitled "A Memoir of Mental Interiors," this book is both an exploration of self and a search for reasons that led to the suicide of the author's friend, Henry, when both were of college age. But there is more. As the memoir unfolds, we learn that since childhood, the author experienced episodes of inexplicable, preoccupying, repetitive thoughts and behavior patterns--much later diagnosed as obsessive compulsive disorder (OCD). And finally, Barber discusses being drawn to work with mentally retarded people in a group home, and the mentally ill homeless at Bellevue Hospital in New York City.Growing up in an intellectual New England family with a tradition of sending its sons to Andover (a prestigious prep school) and Harvard, Barber was expected to continue the tradition, and so he did. At Harvard, however, Barber found himself disintegrating into obsessive thinking, unable to concentrate, near suicidal. He withdrew from Harvard, went back to his small town, hung out with his friends Henry and Nick, washed dishes in a local restaurant, took courses at the local college. Obsessive thinking continued to torment him.In desperation, he dropped out of college again, quickly finding a position as a "childcare worker" in a local group home. The author believes this step was the turning point that led eventually to effective treatment of his OCD (psychotherapy and Prozac), completion of his education, a fulfilling "career" in mental health recovery, and a happy family life. He is currently an associate of the Yale Program for Recovery and Community Health at Yale University School of Medicine.

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Annotated by:
Aull, Felice

Primary Category: Literature / Literature

Genre: Anthology (Mixed Genres)

Summary:

This anthology of poems, short stories, and essays derives from the literary magazine, Bellevue Literary Review, which began publication in 2001. The editor of the magazine and her staff have selected what they consider to be the best literary pieces from the Review's first 6-7 years of publication. Like its parent magazine, the anthology focuses on work that addresses the illness experience, health, healing, and the experiences of health care professionals and other caregivers. The anthology is divided into three parts, each of which has several subsections. Part I, "Initiation," looks at patients' introduction to illness and introduction of doctors to medical education and medical practice. Part II, "Conflict: Grappling with Illness," divides into sections on disability, coping, madness, connections, and family. Part III: "Denouement," addresses mortality, death, loss, and aftermath.

Among the 81 authors represented, seven are physicians, and another half dozen or so are in other caregiving professions such as nursing, social work, counseling. Some writers are well recognized in the literary world (for example James Tate, Amy Hempel, Alicia Ostriker, Rachel Hadas, Sharon Olds, Philip Levine, Floyd Skloot, Julia Alvarez, David Lehman, Rafael Campo, and Abraham Verghese -- the latter two are physicians); most of the less well-known others have published in a variety of venues.

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Dying: A Memoir

Taylor, Cory

Last Updated: Aug-21-2017

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Australian writer Cory Taylor was diagnosed with untreatable melanoma at the age of 60.  In a few short weeks she wrote this memoir, exploring what she was feeling and what is missing in modern medical care of the dying.  She died at the age of 61, a few months after this book appeared in her native country.  

The book has three parts. Part I, Cold Feet, starts right off discussing a euthanasia drug purchased online from China. Taylor’s melanoma has metastasized to many parts of her body, including her brain. It was first diagnosed in 2005, a malignant mole behind her right knee. In the decade of her cancer, she has tried three drug trials, thought about suicide, and received palliative care. She has harsh words for doctors who don’t mention death, a psychologist who doesn’t help her “Adjustment disorder,” and medicine in general that sees death as a failure.      
       
Taylor feels anger, sadness, and loneliness. She finds comfort and camaraderie in a group called Exit, where there’s frank discussion about death. She writes, “We’re like the last survivors on a sinking ship, huddled together for warmth” (p. 14). She has neither religious training nor interest in it. She became a writer late in life, and now she sees a clear purpose for her “final book.” She writes, “I am making a shape for my death, so that I, and others can see it clearly. And I am making it bearable for myself” (p. 31).  

Although scared and suffering, she is reluctant to commit suicide because of the impact on her husband, two sons, and friends. Dying, she writes, “is by far the hardest thing I have ever done, and I will be glad when it’s over” (p. 49).

Part II, Dust and Ashes, describes her earlier life with her mother and father. Her parents were unhappy together and eventually divorced. In her life review, Taylor searches for meaning in the influences on her life. Her family moved often in Australia, also to Fiji and Africa. She feels rootless herself, traveling to England and Japan. Both of her parents die with dementia; she was with neither one at their ends.  
   
Part III, Endings and Beginnings, goes further back to her childhood. She reflects on an idyllic time in Fiji, her discovery of the power of language and writing, and various trials of growing up. She worries that she wasn’t vigilant enough in checking her skin, thereby allowing her disease to become fatal. She feels autonomy in having the Chinese euthanasia drug, but her life is clearly closing in. She says she weighs less than her neighbor’s dog. The last page of the book imagines her death as a cinematic montage, ending with “Fade to black” (p. 141).  

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Primary Category: Literature / Nonfiction

Genre: Graphic Memoir

Summary:

In-Between Days: A Memoir about Living with Cancer is an accurate and suggestive title. At 37, Teva Harrison was diagnosed with Stage IV breast cancer with metastases to her bones. She lives between hopes for new treatments allowing a useful life but also fears about debility—some already caused by her treatments—and death. An artist, she has created a hybrid of a graphic novel with comic-book style drawing on the left page and traditional prose facing on the right, with variations of this format now and then.     
       
The imaginative world of the book ranges widely in mood, topic, and subject matter, and there is a helpful organization to group the material.
Her Preface tells us how drawing helped her gain some power over “the bogeyman that is my cancer” (p. 1). In her Prologue, she tells of “living in the shadows,” or “liminal spaces,” but choosing to occupy these as best she can (p. 3).            

Part One lays out the medical facts and dilemmas. The sections are Diagnosis, Treatment, and Side Effects. The author describes the turmoil of being sick with no clear cause, the emotional impact of the serious diagnosis on her and her family, also nausea, loss of fertility, dilemmas of pain management, and many side effects of treatment, including weight loss as well as sudden and torturous menopause.
  
Part Two explains her social status, her marriage, her “mixed-bag inheritance” (including high-risk Ashkenazi genes), and social aspects, including feeling invisible as a patient, accepting help from friends, being in a support group, and what does a likely “early demise” mean for her, an atheist?
         

Part Three explores the many emotions in sections for hope (using clinical trials, for example), gratitudes (“At least I’m wasting, not bloating”), wishes, fears, and “Managing Anxiety at Home” (pictures of yoga, gardening, long walks, house cleaning), self-blame, and—nonetheless—dreams. The final section “Incurable” names her current status: “In treatment for the rest of my life,” but the facing picture shows her as a large powerful bird flying among dramatic clouds with the words “I mean what do I have to lose?” Her prose affirms: “Live like a tornado, when I can.” 

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The Illumination

Brockmeier, Kevin

Last Updated: Jun-28-2017
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Brockmeier constructed this novel as six individual stories. No overriding plot carries across all the stories, and none of the individual stories has much of a plot either. But, each is tangentially related to the subsequent story through a journal comprising love notes written daily by a husband to his wife that passes from one story to the next.  

I love the ball you curl into when you wake up in the morning but don’t want to get out from under the covers. I love the last question you ask me before bedtime. I love the way you alphabetize the CDs, but arrange the books by height. I love you in your blue winter coat that looks like upholstery fabric. I love the scent of your hair just after you’ve taken a shower… (p. 16)  

The stories share characters, but only insofar as they are involved in the transfer of the journal.  

Also connecting the stories is a phenomenon in which visible light is produced from the location of the body where there is pain, injury, or disease, and in one case an inanimate object—the journal. It just started to happen.  

The Illumination: who had coined the term, which pundit or editorial writer, no one knew, but soon enough—within hours, it seemed—that was what people were calling it. The same thing was happening all over the world. In hospitals and prison yards, nursing home and battered women’s shelters, wherever the sick and injured were found, a light could be seen flowing from their bodies. Their wounds were filled with it, brimming. (p. 138)  

The Illumination
is part of every story, but never the main subject. It’s noticed, it’s discussed, it’s contemplated, and eventually accommodated as part of daily existence:  “everyone began to accept that pain now came coupled together with light.” (p. 139) The Illumination is always there, was always there, and will always be there because “there is no such thing as photonic degradation, that light was effectively immortal, or at least as immortal as the universe itself.” (p. 256)

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Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Nonfiction

Genre: Criticism

Summary:

In this book, Ivan Illich offers a harsh critique of health care as provided in western industrialized societies during the 1970s. However, he did not write this book as a health care expert. He was trained as a medieval historian and philosopher, and taught the history of friendship and the history of the art of suffering. Indeed, he admitted:  “I do not care about health.” (p. i) And yet, he could have written the same critique 40 years later.  

What brought Illich’s attention to health care was his broader interest in how modern responses to societal level challenges become counterproductive and even harmful:
The threat which current medicine represents to the health of populations is analogous to the threat which the volume and intensity of traffic represent to mobility, the threat which education and the media represent to learning, and the threat which urbanization represents to competence in homemaking. (p. 7)
Illich’s general thesis is that health care can work against the healing people seek from it, that health care can be as pathogenic as disease, and that health care can expropriate health. Health care is a nemesis to its subjects, he asserted, because it is “a social organization that set out to improve and equalize the opportunity for each man to cope in autonomy and ended by destroying it.” (p. 275)  

Illich builds his argument around the concept of iatrogenesis, which he differentiates into three categories: 1) clinical iatrogenesis, 2) social iatrogenesis, and 3) cultural iatrogenesis, each of which is given a separate section in the book.

Clinical iatrogenesis is the harm done to people as the result of actions taken to restore health or prevent illness, such as an adverse drug event, a hospital-acquired infection, or perforated bowel from a screening colonoscopy. Illich characterizes clinical iatrogenesis as it is understood and used in biomedical circles, but he brings a particular poignancy to it when he refers to “remedies, physicians, or hospitals [as] the pathogens, or ‘sickening’ agents” at work. (p. 27)  

With social iatrogenesis, Illich is referring to the harm societal arrangements for health care can inflict on people it’s meant to help. These arrangements comprise hospitals, physicians, health care product industries, insurers, and government agencies. The net effect of their actions is to standardize health care, and in Illich’s view, standardizing health care amounts to the “medicalization of life.” The more life is medicalized, the more people are forced to operate under the influence of organized health care, “when all suffering is ‘hospitalized’ and homes become inhospitable to birth, sickness, and death; when the language in which people could experience their bodies is turned into bureaucratic gobbledegook; or when suffering, mourning, and healing outside the patient role are labeled a form of deviance.”
(p. 41)  Harm results to people whose ideas of what constitutes illness and whose preferences in the management of their illnesses do not match up with standardized health care. They could be harmed by treatments they don’t think they need, such as drugs to blunt grief, or in the ways they do not prefer, such as in a hospital. Thus, in social iatrogenesis, the social arrangements of health care are the pathogens.  

Before the social movements and transformations produced standardized health care, people of various cultures coped and adjusted in their own ways to the suffering they experienced. Illich’s cultural iatrogenesis occurs when societies capitulate to “professionally organized medicine [that] has come to function as a domineering moral enterprise that advertise industrial expansion as a war against all suffering.” (p. 127)  Illich is not saying that suffering is good and should be preserved, but rather that societies coming under the control of industrialized health care suffer more and suffer in ways they no longer have the authority or will to manage. Cultural iatrogenesis also manifests when professionally organized medicine supplants community responses to health problems people in that community experience: “The siren of one ambulance can destroy Samaritan attitudes in a whole Chilean town.” (p. 8) He elaborates on how cultural iatrogenesis works against people with examples involving treatment of pain, creating and eliminating diseases, and death and dying. 

Illich’s thoughts on countering the counter productivity of industrial health care take up the last section of the book. He does not propose tearing down organized health care, but rather getting it to where “health is identical with the degree of lived freedom,” because “beyond a certain level of intensity, health care, however equitably distributed, will smother health-as-freedom.” (p. 242)  Illich is beseeching organized health care to leave life less medicalized so as to leave more room for people to decide themselves if their challenges are a matter of health or not, and how they would prefer to manage them when health care may have a role. To this end, he concentrated this section of the book mostly on the political responses required to restore “freedom and rights” people ought to have to manage their health.  

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The Fall

Singh, Tarsem

Last Updated: May-04-2017
Annotated by:
Clark, Mark

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

This film focuses on the interaction between 5-year-old Alexandria and Roy, a Hollywood stuntman in the early days of film.  The two are residents of a rehabilitation hospital, and both are recovering from falls they’ve taken: he’s paralyzed from the waist down as a result of a failed stunt; she’s broken her humerus as the result of a fall she’s taken in an orange orchard.  (A child in a migrant family, she’s been tasked, at 5 years of age—presumably out of economic necessity—with climbing ladders to pick oranges.)  Having accidentally intercepted an affectionate note—Alexandria’s child-missive—meant for the kindly but preoccupied nurse Evelyn, paralyzed Roy befriends the girl and quickly wins her over by telling her the wondrous tale of a masked bandit and his companions, all of whom have been betrayed by the evil emperor Odious, and all of whom are united in their quest for vengeance against the ruler.  While Roy narrates the story, we see it take place through Alexandria’s eyes, and the characters she envisions are drawn from people in her life.  The role of the heroic masked bandit she assigns to Roy himself, blended to a poignant degree with her deceased father.  Alexandria sometimes interrupts and asks questions about or challenges the story’s development, whereupon Roy makes adjustments: it’s clear that the story is a co-constructed project.  Roy has, however, become increasingly despondent over his paralyzed condition and over the fact that his fiancée has broken off the engagement as a result of Roy’s condition.  As time goes on, Roy uses his unfolding story as a means of manipulating Alexandria to retrieve morphine from the hospital dispensary.  He tries and fails to commit suicide with the pills that Alexandria supplies.  In the process, he winds up bringing about a severe injury to the child.  Filled with remorse and guilt, Roy alters his story such that it can be a source of separation between him and the girl: it becomes cruel and violent, and suggests that the hero is a weak, inglorious imposter who deserves to die.  The anguished Alexandria protests, demanding that Roy change the story.  Roy refuses, insisting that “It’s my story.”  But Alexandria retorts, “It’s mine, too.”  And Roy relents.  The masked bandit of the story is redeemed, and Roy himself is as well.  The film closes first with Roy, Alexandria, the hospital patients and staff watching the film in which Roy’s acting had led to his accident.  As the scene approaches the point where the accident had occurred, Roy feels understandable anxiety; but the film has of course been edited.  Roy is relieved, but turns to Alexandria, in the hopes that she is not terrified.  He finds her beaming.  Then the film we are watching, The Fall, shifts to a rapid series of black-and-white footage of stunts—the effect is reminiscent of the love scenes gathered at the end of Cinema Paradiso—narrated by the marveling Alexandria.  Each clip features a person in imminent, catastrophic danger—who is then impossibly rescued at the last second by fortunate chance.  As Alexandria blows us kisses through a character who is falling backward, we are left in a state of bewildered gratitude over this strange gift of stories we human beings offer each other—stories that assure us over and over again how, confronted with the calamities we see no way of escaping, we are nonetheless saved. 

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Annotated by:
Mathiasen, Helle

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

A rare patient narrative from 1812 describes a mastectomy performed before the introduction of anesthesia. This letter from Frances d'Arblay (1752-1840) (née Frances [Fanny] Burney), addressed to her older sister, Esther, details her operation in Paris by one of Napoleon's surgeons.In her childhood and youth, Fanny Burney moved in the best London society; she was a friend of Dr. Johnson who admired her. She served five years at the court of George III and Queen Charlotte as Second Keeper of the Royal Robes (1786-1791). Fanny Burney married Adjutant-General in the army of Louis XVI Alexandre-Jean-Baptiste Piochard d'Arblay in 1793. He had fled to England after the Revolution. They lived in England and spent ten years in France (1802-1812).Burney's mastectomy took place 30 September 1811. The patient wrote about her experience nine months later. She chronicles the origin of her tumor and her pain. She is constantly watched by "The most sympathising of Partners" (128), her husband, who arranges for her to see a doctor. She warns her sister and nieces not to wait as long as she did. At first resisting out of fear, the patient agrees to see Baron Dominique-Jean Larrey (1766-1842), First Surgeon to the Imperial Guard.He asks for her written consent to guide her treatment; her four doctors request her formal consent to the operation, and she makes arrangements to keep her son, Alex, and her husband, M. d'Arblay, away. Her husband arranges for linen and bandages, she makes her will, and writes farewell letters to her son and spouse. A doctor gives her a wine cordial, the only anesthetic she receives. Waiting for all the doctors to arrive causes her agony, but at three o'clock, "my room, without previous message, was entered by 7 Men in black" (136).She sees "the glitter of polished Steel" (138). The extreme pain of the surgery makes her scream; she feels the knife scraping her breastbone. The doctors lift her up to put her to bed "& I then saw my good Dr. Larry, pale nearly as myself, his face streaked with blood, & its expression depicting grief, apprehension, & almost horrour" (140).Her husband adds a few lines. These are followed by a medical report in French by Baron Larrey's 'Chief Pupil'. He states that the operation to remove the right breast at 3:45pm and that the patient showed "un Grand courage" (141). She lives another twenty-nine years. It is impossible to determine whether her tumor was malignant.

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Admission, Children's Unit

Deppe, Theodore

Last Updated: Apr-11-2017
Annotated by:
Clark, Mark

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

The speaker of this poem is a nurse who is recalling and attempting to come to terms with a disturbing clinical encounter she’d had the week before.  (I should note at the outset that there’s no indication in the poem as to whether the nurse is male or female.  I choose to think of her as female).  What had happened is that a mother had brought her five-year-old son in for treatment, and the nurse’s exam revealed that the child had second- and third-degree burns on his torso—in the shape of a cross.  The mother, weeping, confessed that her boyfriend had, as a punishment, applied a cigarette to the child’s body—while the mother had held her son.  Seeing the mother’s tears, the nurse considered offering the woman some Kleenex, but could not bring herself to do so.  The child retrieved the box of Kleenex, then clung to his mother’s skirt, and glowered at the nurse.  Then the nurse had participated with three others in prying the boy away from his mother.  In the present of the poem, a week after the encounter, the nurse attempts to deal with the guilt and shame she feels in her failure of professional decorum and compassion—at having failed to rise above her moral judgment against the mother and offer the woman basic human kindness and respect.  In confronting the chaos of her emotions, the nurse turns to a story she’d learned in high school: the story of St. Lawrence.  The significance of her attempt to think with this story can be overshadowed, for readers, by the intensity of the clinical encounter she recalls; but her endeavor is of at least equal significance as the encounter.



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Annotated by:
Clark, Mark

Primary Category: Literature / Nonfiction

Genre: Criticism

Summary:

Wandering in Darkness is an intricate philosophical defense for the problem of suffering as it is presented by medieval philosopher Thomas Aquinas.The work addresses the philosophical / theological problem of evil, which might be expressed as follows:  if one posits an all-good, all-powerful God as creator, yet suffering exists in the world, then (a) God must be evil, since he created it; (b) God is less than all-powerful, since suffering came to be in his creation, and he could not stop it; (c) God is evil and weak, since suffering came to be in his creation, and he did not want to stop it; or (d) suffering is an illusion.  No alternative is, of course, very satisfying. In her book,   Eleanore Stump augments Thomas Aquinas’s theodicy by reflecting upon what she calls “the desires of the heart,” a dimension of human experience that Aquinas leaves largely untreated in his consideration.  Stump explores this dimension by breathtaking exegeses of Biblical narratives as narratives: the stories of Job, Samson, Abraham, and Mary of Bethany.  “Understood in the contexts of [these] narratives,” Stump argues, “Aquinas’s theodicy explains in a consistent and cogent way why God would allow suffering" (22).

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