Showing 1 - 10 of 686 annotations tagged with the keyword "Illness and the Family"

Annotated by:
Schilling, Carol

Primary Category: Literature / Nonfiction — Secondary Category: Visual Arts /

Genre: Memoir

Summary:

Devan Stahl’s opening essay in this unusual book explores the tension between her lived experience of being diagnosed with multiple sclerosis (MS) in her twenties and her physicians’ biomedical descriptions of it. While that tension is a familiar theme in patients’ narratives, Stahl’s approach is fresh and generously collaborative. Stahl, a bioethicist, focuses her brief narrative on her uneasy hours inside MRI machines and with clinicians who read the images. Stahl encouraged her sister, artist Darian Goldin Stahl, to transmute her physicians’ diagnostic tools into printmaker’s works, which bring personal meaning and sisterly solidarity to Devan’s experience. Devan then invited Darian and four humanities scholars to write reflective commentaries on her narrative, Darian’s images, and the commentaries themselves. The result is a richly layered, multi-vocal reflection on what Devan Stahl has accepted as “the dark gift of bodily frailty” (xxvii).

Darian Stahl’s prints were inspired by the drawings of Renaissance anatomist Andreas Vesalius that the sisters admired. Unlike their modern counterparts, the older images placed bodies in humanly built and natural environments that are rich with metaphor and theological implications. Darian’s photographic silkscreened and stone lithographic prints, some of which accompany her essay, imaginatively relocate her sister’s MRI scans in domestic spaces that suggest both Devan’s present state: her spine captured in a glass kitchen jar. And her future: a ghostly figure (actually Darian’s) at the base of the staircase that Devan will someday have trouble climbing. Making art became an act of caregiving.

The scholarly essays affirm that a single diagnosis can set in motion processes of interpretation in the context of family, community, academic discipline, and culture. But in this context, they too are expressions of caring for Devan. Literary and health humanities scholar Therese Jones writes that Stahl’s narrative “testifies to [her] hope of transcending or at least managing the alienation and incoherence of a disrupted life” (49). Literature professor Kirsten Ostherr links the Stahls’ collaborative projects with the patient empowerment movement, where creative expression offers one way to resist “the technomediated patient narrative” (71). Two of Devan Stahl’s theological studies professors contribute the remaining essays. Ellen T. Armour believes that the Stahls’ projects suggest the value of engaging the medical humanities in pastoral practice and vice versa, especially to challenge biomedicine’s claims to mastery and its “disavowal of vulnerability” (89). Jeffrey P. Bishop, who is also a physician, understands a patient’s position within the asymmetric power of medicine. Yet he also resists “the power ontology that animates so much of the West” (102). He offers instead a vision of accepting “the dark gift” of the fragility of the body, which can be both humbling and liberating (105). Viewing one of Darian’s images, he writes, “calls me out of myself” (105).

In Devan Stahl’s final reflection on her colleagues’ commentaries and her sister’s art, she concludes that sharing her experience has revealed both a “power in submission” and her responsibility to other patients (112). Her discovery leads her to a “new image” of herself and acceptance of Bishop’s observation: “Flesh calls the self into question” (115, 103).

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Amour

Haneke, Michael

Last Updated: Jul-10-2018
Annotated by:
Teagarden, J. Russell

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

The film enters late into the lives of Anne and Georges, a Parisian couple apparently in their 80s, apparently long married, and apparently retired music teachers. Maybe they still teach music, and maybe they still play, based on the important place a grand piano is given in the grand living room of their apartment. Their daughter, Eva, is a working musician and is married to one as well. When Georges and Anne sit together in the living room, the controls to the stereo system are never more than an arm’s length away. This family is serious about music; they love music. But, their love of music is not the love of the movie title, “Amour.” Amour is the love between Anne and Georges, and the forms this love takes. 

We first see the amour of Georges and Anne in their quotidian activities. They eat breakfast together at the small table in the cramped kitchen. They sit across from one another—or one of them lies down on the adjacent couch—and read to each other from the paper or talk about various subjects, like music. They have been doing this for decades, and probably would for decades more, but that isn’t likely, and we see why soon. 

While having their breakfast one morning, Anne becomes unresponsive to Georges while looking him straight in the eye. She eventually comes to and goes about her business as if nothing happened and doesn’t know what Georges is talking about when he describes the incident. She probably had a transient ischemic attack—a warning that a stroke may be coming—and as a result, had surgery to clear an occlusion from her carotid artery to prevent a stroke from actually occurring. However, something goes wrong in the hospital and Anne suffers a stroke there nevertheless. She returns home with some paralysis on her right side. The form of amour changes. Now the quotidian activities involve Georges administering care to Anne: he sees to her toilet, washes her hair, cuts her food, reads her newspaper articles, and helps her walk from one spot to another in the apartment when he’s not pushing her in a wheelchair. During a moment when Georges and Anne are in their customary chairs in the living room, Georges says to her, “I’m so pleased to have you back.” To which Anne responds, “Please never take me back to the hospital, promise?” 

But when Anne has another stroke, Georges takes her back to the hospital. She returns home having lost most of her ability to move at all, she can only eat or drink with considerable difficulty even with assistance, she can’t communicate verbally to any extent, and she wets herself. Georges adds feeding her and exercising her arms and legs to his established routines of bathing her, reading to her, and telling her stories. Amour has taken the shape of getting her through the days with great effort and later with help from nurses. 
 

Anne wants no more of her life despite Georges’ efforts and pleas. His daughter argues with him about the care her mother needs. The nurses can’t administer care to Anne in a way he expects. Anne does not want her daughter to see her as she is. She cries out for her own mother. She won’t take water or food. She is in pain. Georges is left with only options that test the extreme boundaries of amour.

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Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Weeks after the birth of her child, the writer receives a phone call informing her that her mother, who has gone missing, has hanged herself.  This memoir, like others written in the aftermath of similar trauma, is an effort to make some sense of the mother’s mental illness and horrifying death. Unlike many others, though, it is the story of a family system—and to some extent a medical system—bewildered by an illness that, even if it carried known diagnostic labels, was hard to treat effectively and meaningfully.  The short chapters alternate three kinds of narrative:  in some the writer addresses her mother; in some she recalls scenes from her own childhood, plagued by a range of symptoms and illness, and her gradual awareness of her gifted mother’s pathological imagination; in some she reproduces the transcript of a video production her mother narrated entitled “The Art of Misdiagnosis” about her own and her daughters’ medical histories. Threaded among memories of her early life are those of her very present life with a husband, older children, a new baby, a beloved sister and a father who has also suffered the effects of the mother’s psychosis at close range.  

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One Crimson Thread

O’Siadhail, Micheal

Last Updated: Apr-19-2018
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

This collection of 150 sonnets takes us through the journey from the writer’s wife’s diagnosis with Parkinson’s, eventually complicated by dementia and overmedication, to her death and his early days of grieving.  Married for over 40 years and close companions, their successive separations deal new blows as they happen: She goes into skilled nursing care, gets lost in delusions, and becomes more frail and erratic, finally succumbs after a fall and a short period in a coma.  The writer draws on biblical metaphors and threads memories of their earlier life together in fleeting images so that the reader is left to infer from glimpses a rich and happy marriage that, he reflects, prepared them—but not enough—for this going.  

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Every Note Played

Genova, Lisa

Last Updated: Apr-10-2018

Primary Category: Literature / Fiction

Genre: Novel

Summary:

This is a dramatic and moving story about a concert pianist who, at 45 years of age, suddenly and inexplicably, has ALS, and also equally about his ex-wife Karina, who takes on his care throughout his slow, inevitable, and lethal decline. As many readers know, ALS (Amyotrophic Lateral Sclerosis). or “Lou Gherig’s disease,” hardens the motor nerves so that, progressively, there is no more control of muscles throughout the body. Not many readers know, however, the difficult path such patients and their families must pursue. This sensitive and detailed novel takes readers powerfully into the world of ALS, a disease for which there is today no cure.                                                                                      

Obsessed with his musical career and international travel, Richard has paid little attention to Karina and their daughter, Grace, and he has had affairs with other women. Karina has deceived him about her inability to bear more children. Because of their move from New York City to Boston, Karina, also a gifted pianist, has lost a possible career in jazz and now gives piano lessons to unpromising students. 

The first several chapters alternate between Richard and Karina. Although divorced from him, she brings him, now an ALS patient, back into the home they once shared. Various nurses, doctors, and other specialists try to explain the difficult future that includes certain loss of body functions, but Richard and Karina are slow to comprehend these. Despite their denial, they are forced to come to terms with Richard’s progressive decline and, finally, death.     
          
Richard loses the ability to use his hands, then his arms. He needs a special machine to breathe at night. Soon he has paid caregivers for parts of the day; these include a cheery and admirable man named Bill. No longer able to eat, Richard has a feeding tube. Later he needs a hospital bed. Also a Head Mouse to work his computer. Also an elaborate wheelchair. With unresolved issues in the past, Richard and Karina are emotionally apart—even with feelings of hate and rage—even while she cares for him.  

Karina’s walking partner Elise, a teacher, helps her stay sane. Karina travels to New Orleans with Elise and her class and finds her interest in jazz reawakened. No longer able to breathe even with assistance, should Richard go on to mechanical ventilation that will require 24-hour care at enormous expense? A choice is made. Richard dies, with various resolutions before and after his death.  

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The Dark Flood Rises

Drabble, Margaret

Last Updated: Apr-09-2018
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Fran, an aging but energetic expert on elder housing, drives around the English countryside visiting facilities and also friends and family.  She, herself, is not at all ready to go gentle into the good night so many others are facing.  But everywhere she encounters reminders of mortality--her son's fiancee suddenly dies; an old friend is dying a lingering death of cancer; others in her circle of family and friends are facing their own or others' mortality in various ways, including natural disasters like earthquake and flood.  The episodic story takes place in England and in the Canary Islands; the large cast of characters are linked by intersecting stories and by their mortality, of which they, and the reader, are recurrently reminded.    

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So Much For That

Shriver, Lionel

Last Updated: Jan-18-2018
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Fiction

Genre: Novel

Summary:

The book opens with Shep Knacker packing his bags for his long-dreamed of “Afterlife”—his word for retirement—in Pemba, an island off the coast of Tanzania. He plans to take his wife, Glynis, and his high school aged son, Zach. This plan is not unexpected because Shep and Glynis have made many “research” trips during their 26-year marriage to find the right place (though never to Pemba). But, there were always reasons not to act on their research. An intervention was needed. Glynis is not home while he is packing because she is at some “appointment.” When she gets home, Shep informs her of his plans for the three of them to leave for Pemba, and he further informs Glynis that he’s going whether she comes or not. In response, she informs him that she has cancer—a bad one (mesothelioma); he unpacks, so much for that.

What unfurls from there is more complicated than just the challenges Glynis’s disease produces, though these are monumental challenges. Other people, too, are in need of Shep’s attention. His father’s decrepitude is advancing, his sister is on the brink of homelessness, and his teenage son is detaching from him and life in general. Shep eventually loses his job as an employee at the handyman company he once owned (“Knack of All Trades”) then sold to fund his Afterlife. There’s more. 

Shep's best friend, Jackson, who also worked with him at Knack of All Trades has two girls, and one of them has familial dysautonomia. This progressive genetic disease of the nervous system produces a constellation of medical problems that are bizarre, intense, and serious, before it ultimately produces a tragic end. The trauma and tragedy this disease inflicts in this story (and in life) encompass the entire family, in spite of the heroic efforts of Jackson’s wife, Carol. 
 
The many plot lines in this novel at times proceed independently of one another, and at other times intersect. They concern serious illness experiences and the effects they have on families and also how the American health care system can place burdens on those who need it. Nevertheless, the two families, beaten down by illness, fatigued from encounters with doctors and hospitals, and exasperated from fights with insurance companies, rally enough to make it to Pemba. The trip becomes financially affordable as the result of some narrative gimmickry involving a financial settlement of $800,000 from the company that put asbestos in equipment Glynis had used years before. They would spend the rest of their lives there, longer for some than for others.   

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The Children Act

McEwan, Ian

Last Updated: Jan-05-2018
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Approaching age 60 and childless, Fiona Maye is a family court judge who must decide if 17 year-old Adam has the right to refuse blood transfusions for his leukemia. He and his parents are Jehovah’s Witnesses.  The Children Act does not allow a child to make this decision until age 18. Fiona is an atheist and her 35-year marriage to an academic is falling apart.  She takes the extraordinary step of visiting Adam to know him and understand his conviction. He is beautiful and gifted, he writes poetry and plays violin. Why would he not want to try to live? She makes her decision having no idea if it will be morally, legally or medically right. To say more would spoil it.

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Stitches

Small, David

Last Updated: Dec-28-2017
Annotated by:
Natter, Michael

Primary Category: Literature / Nonfiction

Genre: Graphic Memoir

Summary:

Stitches is a beautifully crafted graphic novel by award winning writer and illustrator David Small. The memoir chronicles Smalls’ life with chronic illness, focusing on his experience as a child and adolescent with cancer in the setting of an abusive upbringing. We learn through the eyes of a child what being a patient is like, and how, despite all odds Small was able to use art as a way to make a normal life for himself. 

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Summary:

Dr. Monika Renz’s work with dying patients is unusual if not unique in the way she appropriates and applies insights from Jungian depth psychology, practices available in patients’ faith traditions, and musically guided meditation to invite and support the spiritual experiences that so often come, bidden or unbidden, near the end of life.  An experienced oncologist, Dr. Renz offers carefully amassed data to support her advocacy of focused practices of spiritual care as a dimension of palliative care, but is also quite comfortable with the fact that “neither the frequency nor the visible effects of experiences of the transcendent prove that such experience is an expression of grace” because “unverifiability is intrinsic to grace.”  Still, her long experience leads her to assert not only that “grace” can be a useful, practical, operative word for what professional caregivers may witness and mediate but also that affirmation and support of patients’ spiritual, religious, or transcendent experiences in the course of dying can amplify and multiply moments of grace, which manifest as sudden, deep peace in the very midst of pain, profound acceptance, openness to reconciliations, or significant awakenings from torpor that allow needed moments of closure with loved ones.  Describing herself as “an open-minded religious person and a practicing Christian,” she reminds readers that God is a loanword, whose basic form in Germanic was gaudam, a neutral participle.  Depending on the Indo-Germanic root, the word means “the called upon” or “the one sacrificed to . . . .”  Openness to the divine in both patients and caregivers, Dr. Renz argues, can and does make end-of-life care a shared journey of discovery and offer everyone involved a valuable reminder that medicine is practiced, always, at the threshold of mystery.

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