Showing 101 - 110 of 680 annotations tagged with the keyword "Illness and the Family"

Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

On July 5, 1998, physics Professor Alan Cromer suffered a heart attack on a plane, and survived after almost an hour of resuscitation efforts, but sustained brain injury from lack of oxygen.  In this chronicle of caregiving, his wife, a psychiatric nurse by training, gives a very personal, detailed account of the radical adaptations his disability required of both of them.  Her story includes reflection on his and her own emotional adjustments to loss of parity in communication and awareness, practical adjustments to physical limitations, and social adjustments to family, friends and professional colleagues.

Arduously, over time, Alan regained some ability to read and speak--indeed, he spoke to groups with Janet about their life together during the peak of his rehabilitation.  But the road to even partial recovery was bumpy, and the writer fully acknowledges the pain, grief, irritation, and deep frustrations that intersected moments of authentic pleasure, discovery, and mutual kindness.  Professor Cromer died September 3, 2005.

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Annotated by:
Donley, Carol

Primary Category: Literature / Nonfiction

Genre: Investigative Journalism

Summary:

In 1951 when Henrietta Lacks was dying of cancer in the colored ward of Johns Hopkins, cancer cells taken from her without her knowledge "became the first immortal human cells grown in a laboratory"(4).  Known as HeLa cells, they are still reproducing today and are used world wide in research for cancer, cloning, genetics, Parkinsons, and many technologies. Henrietta's family did not know she was the source of these immortal cells until scientists began testing the family members too.  Poor and black, they were very angry to find the white establishment had made fortunes using HeLa cells while the family got nothing for it and couldn't even get good health care. In her thorough and careful investigation, Rebecca Skloot interviewed the Lacks family; scientists, doctors, and others who worked with HeLa cells; historians; journalists; ethicists. This book traces the complex stages of her search for the truth about what happened to Henrietta Lacks, her HeLa cells, and her family.

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Annotated by:
Shafer, Audrey

Primary Category: Literature / Nonfiction

Genre: Anthology (Essays)

Summary:

As explained in the succinct yet thorough introduction by co-editor Kimberly Myers, an international conference on the topic of "The Patient" was convened at Bucknell University in Pennsylvania in 2006. This collection of essays, which range from personal experience to scholarly literary critique, results from the conference presentations.
 
Of the ten essays, four concern personal or familial experience of illness. These four cover a vast range: literature and disability specialist Kristin Lindgren describes her story of the elusive diagnosis of chronic fatigue syndrome and her coping skills; medical humanities and medical ethics expert Carol Schilling offers a poignant narrative of her experience as a mother of a previously healthy, athletic son who suffers a cervical spine injury from a skiing accident; Gayle Whittier places the story of her daughter's disability amongst a trio of nonfictional and fictional narratives of disability and illness; and renowned poet Tess Gallagher explores her relationship with and caring of her mother who has Alzheimer's disease. These essays, written as they are by women steeped in literature and writing, are not merely chronicles; rather they are infused with commentary on story and the meaning of life as story, journey and relationship.
 
The other six essays are likewise diverse and range from cultural/political studies from the Navajo to the Irish (which includes literary analysis of works by poets Eavan Boland and Nuala Ní Dhomhnaill), to insightful critiques of literary works such as  Hjalmar Soderberg 's Doctor Glas, Lauren Slater's Lying: A Metaphorical Memoir, Brian Clark's Whose Life Is It Anyway?, Alejandros Amenabar's film The Sea Inside (Mar Adentro), and George (Marian Evans) Eliot's Janet's Repentance.

Consistent with the nature of medical humanities, the essays cross boundaries. For example, Whittier weaves her experiences as a mother of a disabled child with reflections on embodiment and literary critique. Gallagher compares the notions of time in poem-making with the necessity to live in the moment when caring for a loved one with Alzheimer's. She notes: "Of the written arts, poetry is most responsive to the moment and so coincides with the condensed time frame of those with Alzheimer's - which oscillates between the distant past and the present moment." (p. 71) Schilling tenderly writes of her family (for an illness strikes not just the patient): "We live the best lives we can, folding each of our stories into one another's." (p. 40) Diedrich explores not just the (at times infuriating) play with deceit in Lying, but also examines the ways in which patients lie and medical language obfuscates illness. She further explores, with great insight, expectations: of literary reviewers, patients and physicians.

 

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Summary:

At first the title seems to relate to the main character's lay-off or departure from his job as a professional cellist in a bankrupt and dissolving orchestra.  As the story continues, the title's unpredictable meaning becomes clear. 

Not surprisingly, jobs for cellists are difficult to find. Shattered by his desperate situation, Daigo, the central character (Masahiro Motoki), and his wife Mika (Ryoko Hirosue), return from the city to his hometown where they begin to experience stresses and discomforts associated with joblessness.  After a long period of searching, Daigo responds to an ad for someone to work in departures. Believing that he is applying for a travel advisor job, he discovers that the position involves the ceremonial art of caring for the bodies of those who have recently died--or departed.  He learns about encoffination, the elaborate ritual of washing and dressing the body before placement in the casket prior to burial, from Sasaski (Tsutomu Yamazaki), his new employer. 

Mika is so appalled and ashamed when she learns about his new career, she decides to leave him.  In spite of his own unhappiness, Daigo continues on.  With the remarkably skilled Sasaski at his side, Daigo develops great sensitivity in the ritualized care that is provided before family mourners.  Each of the caring situations becomes for Daigo, a rich story about the textures of human life.  He seeks solace for himself and another measure of dignity for the departed by playing beautiful music on his cello.  Most viewers, including the eventually reconciled Mika, are impressed by the beauty of this probably unfamiliar Japanese ceremony.

Another moving dimension of Daigo's personal story occurs when information is revealed about the father who had abandoned him when he was a child.  Circumstances intervene so that Daigo's new skills and sensitivities contribute to an understanding of that distant past and an opportunity to provide his father with a dignified departure ceremony.    

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One Breath

Clark-Sayles, Catharine

Last Updated: Sep-03-2010
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

This suggestively titled collection of poems provides a lyric record of a physician’s way of seeing.  The situations to which the poems bear witness are not only medical, though many are.  Some are cityscapes into which are woven surprisingly astute observations of homeless people or hitchhikers or ducks in the park.  Some explore the geography of a body where memories are held in “neuron chains.”  Some articulate bits of personal history from the point of view of a woman who has spent years in medicine, caring for the elderly, seeing bodies with the double vision of a clinician and a person whose spirituality clearly informs all she sees.

Titles like “ER Alphabet of Hurt” or “Looking for God On the Radio” or “Hippocrates Voyeur” or simply “Scars” may give some sense of the range of focus.  Her vision and voice are strongly local; those who know Marin County, north of San Francisco, will recognize the places that become the poet’s personal geography.  Those who don’t will still see in these poems a sensibility shaped and refined by the knowledge that comes from deep habitation.  

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To Be Mona

Easton, Kelly

Last Updated: Sep-03-2010
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel for Young Adults

Summary:

As the story opens, Sage Priestly, 17, is running for class president against Mona, whose popularity Sage finds both threatening, fascinating, and a matter that keeps her in a state of uncomfortable envy. In her efforts to "be Mona," Sage undertakes a drastic diet, changes her haircolor, and focuses all her leisure dream time on Roger--a boy she can't see is incipiently abusive, though her long-time friend, Vern, loves her in a healthy and faithful way--a love that is tested when Sage starts dating Roger and suffering actual physical abuse.  As we learn about her troubled social life, we also learn that at home Sage is a caregiver for her single mother whose bipolar disorder  and depression pose a huge and confusing challenge to the teenage daughter.  Vern's parents eventually intervene to help both Sage and her mother get appropriate care and oversight, and Sage begins to recognize in Vern (and his gay friend Walter, who has suffered his own social challenges) the kind of friend that will last.  The book includes an afterword in which the author provides a note from personal experience on bipolar disorder (one of her parents was bipolar) and abuse, and lists helpful resources. 

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Annotated by:
Belling, Catherine

Primary Category: Literature / Fiction

Genre: Novel

Summary:

The narrator of this novel, fifteen-year-old Christopher Boone, is autistic (or, more accurately, probably, has Asperger's Syndrome). He lives with his father and believes his mother died two years before. Christopher is extremely good at mathematics, seems to have a photographic memory, but does not like novels (other than detective stories, which are about observation and logic), because he cannot empathize with human emotions or make sense of the indirect or figurative. For Christopher, metaphors, like fictions, are lies. He is very fond of dogs, and hates to be touched by people.

When a neighbour's dog is killed, he decides to investigate and, with the encouragement of his teacher, to write a book about his investigation. He quickly makes some very disturbing discoveries. He learns that his mother is not dead after all, but living in London with the husband of the dead dog's owner. The fact that his father has lied to him devastates Christopher. He runs away to London to find his mother, and his courage and tenacity allow him to solve not only the mystery of the dog's death but that of his family's past and future.

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Chronic Progressive

Cohen, Marion

Last Updated: Jul-29-2010
Annotated by:
Schilling, Carol

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

In Chronic Progressive, a collection of 151 short poems divided into three parts, Marion Deutsche Cohen, a well spouse, continues her startlingly candid account of caring for her husband Jeff that began in her previous collection, Epsilon Country (1995, see annotation).  Part I of Chronic Progressive describes Cohen's frustrations during the last of the 16 years that she cared for Jeff at home, as multiple sclerosis left him almost completely dependent on her.  Mother of four, a prolific writer, a poet, and a mathematician, Cohen describes unrelenting stress when family services and insurance providers fail her, when she feels she must protect the sanctity of her home as health care aides and agencies treat it like a hospital or nursing home, or when she's exhausted, which is most of the time.  "It's a state, a / chronic state, a chronic progressive incurable state," she writes (55).

The middle section, the longest, follows Cohen during the ten years Jeff resides in Inglis House, a Philadelphia care facility.  These poems mix reflections on the past with working out the rhythms of life without Jeff in the house, but still unshakably on her mind.  In this section, she also writes "The Last Love Poem for Jeff" and anticipates his death in "A New Vow": "I will give you the best deathbed anyone ever had" (108).  In Part III, Cohen experiences relief and begins life with a new spouse after Jeff's death.  She recalls herself as ". . . the one he began with, the one he'll end with / the one who's been too much in the middle" (162).  But she quickly turns to "Wedding Preparations Former Well Spouse Style" and the "Love Poem for Her New Love."

Taken altogether, the poems reveal a profound effort to sustain vitality and remake ways of living-with integrity-at the edge of human endurance.  "Yes, how readily we reclaim our territories," Cohen observes near the end of her book (180).

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The Gross Clinic

Eakins, Thomas

Last Updated: Jul-22-2010
Annotated by:
Shafer, Audrey

Primary Category: Visual Arts / Painting/Drawing

Genre: Oil on canvas

Summary:

Professor Samuel D. Gross of Jefferson Medical College is demonstrating an operation for osteomyelitis of the femur in the surgical amphitheater in 1875 in this highly dramatic, powerful scene. Light glints off his forehead, and his visage is stern, calm, and surrounded by a halo of gray-white hair. The bloody fingers of his right hand hold a blood-tipped scalpel. He appears to have just made an incision and is turning away to demonstrate his work.

To the surgeon’s left is the patient, lying in right lateral decubitus position, with exposed leg and buttocks. Assistants are retracting the wound, further dissecting within it, and holding the patient’s legs. Blood is on their hands, instruments, and the patient’s leg. The patient’s face is obscured by the chloroform soaked towel that the anesthetist is using to administer general anesthesia. The white of this towel and the operating table’s sheet are the only other bright white values besides the surgeon’s head in this mostly dark painting.

Adding to the drama is the stricken pose of the patient’s female relative--to the surgeon’s right. For charity cases, a family member was required to be present during the surgery. She averts her head and raises her hands, clenched in a claw-like fashion, to block her view.

In the gallery are variously interested and disinterested observers--mostly medical students--in casual poses and dimly seen. The exception is the artist’s self-portrayal--he is studiously drawing in the front row. Dr. Gross’s son (also a surgeon) is standing in the entry tunnel.

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Annotated by:
Bertman, Sandra

Primary Category: Performing Arts / Film, TV, Video

Genre: Video

Summary:

This groundbreaking international film documents the positive impact of art and other creative activities on people with Alzheimer's disease. The film's intention is to change the way we look at the disease.  It does just that.  Brilliantly.

Narrated by the actress Olivia de Havilland, the film opens with a 96 year old woman reading classical music as she's playing at the piano. Her music becomes gentle background sound track for the first vignette, a group of people intently viewing and commenting on Seurat's canvas, "Sunday in the Park."  From their intense concentration and voiced observations, one would never believe this was a group of nursing facility residents on an outing to the Chicago Art Museum.

Throughout the film--at the circus, visiting museums, or in painting workshops conducted at day care centers, nursing homes and assisted-living facilities in Europe and the US-- the hopeless, fatalistic, nobody's there stereotypes of Alzheimer's sufferers is unequivocally denied.  We continually witness people with serious memory problems being brought back into active communication and a rich quality of life.  This is more than busywork arts and crafts: trained professionals knowledgeable about both art and Alzheimer's are providing essential treatment "just as effective if not more so than the drugs."  The benefits of the non-pharmacological along with the pharmacological not only extend life, but create a life worthwhile, where people find meaning and connection.
 
In direct interview, voice-overs and interacting with "patients" and their family members, eminent experts from multiple medical fields - neurology, gerontology, psychiatry- punctuate the film reviewing the latest technologies and concurring that the essence of the person lives on. The latest brain research provides evidence that the parts of the brain related to emotions and creativity are largely spared by the disease and that our technologies for assessing dementia --dealing with sequencing things, dates in order, and what one did this morning--rely on short term memory which is totally irrelevant when enjoying a masterpiece or listening to a symphony.  The documentary also includes comments from art therapists, occupational therapists, directors of specialized care facilities, but the film is anything but talking heads.  The cutaways and extensive footage of the care giving staff and specialists interacting emotionally and physically, visibly bonding with the residents and family members is sincere, loving and inspiring professionalism.

The inspiration for the film and project is filmmaker Berna Huebner's mother, Hilda Gorenstein, once an accomplished painter known as Hilgos.  In one of Huebner's visits to the nursing home, she asks "Mom, would you like to paint again?"  Quite unexpected came the reply, "Yes, I remember better when I paint."  Learning this, the staff psychiatrist who had been prescribing small doses of a tranquilizer for her apathy, anxiety and agitation suggested Huebner enlist art students from the Chicago Museum school to help her mother to begin painting again.  We are not spared the slow and sometimes discouraging process as Mrs. Gorenstein comes alive regaining mobility and communication skills and interacting--bonding-- with the art students.  The film is replete with her colorful paintings created in the next few years until her death at age 93.

"The creative arts are a doorway.  Once that doorway is opened ... things are tapped ... that are genuine and active and alive that don't get tapped in our normal day social interactions when we sit at a table and make conversations over a meal or we read a newspaper article and then talk about the headlines of the day.... The creative arts bypass the [cognitive] limitations and simply go to the strengths. People still have imagination in tact all the way to the end of their disease."

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