Showing 1 - 10 of 688 annotations tagged with the keyword "Illness and the Family"

Summary:

Beth Macy has been a newspaper reporter in the Roanoke, Virginia area for three decades. In this book, she provides extensive reporting on the opioid crisis, how it developed and wreaked havoc in Appalachia, and how it grew into a national crisis across the United States.  

“Dopesick” is the colloquial term people who are addicted and addiction medicine specialists use to describe the constellation of wrenching and violent symptoms opioid withdrawal causes. As one of Macy’s subjects describes it:

You’re throwing up.You have diarrhea. You ache so bad and you’re so irritable that you can’t stand to be touched. Your legs shake so bad you can’t sleep. You’re as ill as one hornet could ever be. And believe me, you’ll do anything to make the pain go away.” (p. 41)
As a result, not long after a person is addicted to opioids, drug seeking behaviors are not motivated by the urge for the next and best high, but instead are driven “to avoid dopesickness at any cost” (p. 9). 

Macy divides her reporting into three major parts: 1) the ways Purdue Pharma fueled the explosion of opioid addiction beginning with the introduction of its product Oxycontin in 1996; 2) the ways in which people get addicted to opioids and how they get their supplies; and 3) the ways the U.S. health care system, criminal justice system, Congress, state legislatures, and regulatory agencies have failed in preventing and fixing the addiction crisis. 
 

As a journalist, Macy weaves the stories of individuals into the larger story of the opioid addiction crisis: people who became addicted to opioids and the effect it had on their families, and the stories of health care professionals who pulled alarms about the rapidly rising rate of opioid addiction and tried as best they could to treat addicted patients and protect the public. We read about the Purdue Pharma executives who were blamed and prosecuted for the marketing campaigns that turned localized opioid addiction patterns into a national opioid addiction epidemic. And we read about individual sheriffs, investigators, prosecutors, judges, and community activists who were trying to stem the tide of addition and death. These stories intersect throughout the book.

Embedded among the individual story lines are digressions Macy uses to elaborate on certain aspects of the opioid addiction crisis. She provides historical perspectives on drug addiction, and how this crisis differs from those of the past. She puts an emphasis on how trends in medical practice to liberalize the use of opioids in the management of all types of pain—minor and major, acute and chronic—converged with Purdue Pharma marketing campaigns for its proprietary opioid products. She cites statistics to show how fast the epidemic was worsening, how widely it was spreading across the United States, and how deadly it had become with mortality rates exceeding those of AIDs mortality at its peak. Other digressions cover how illicit opioid supply chains are created and maintained, and how different levels of governments reacted to the crisis. 

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Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

This intelligent and compelling book invites us to evaluate the losses pertaining to “modern death” and to consider better ways—whether from the past or in the future—to care for the dying, their families, and all care-givers.   
            
Some chapters, such as “How Life (and Death) Were Prolonged,” are historical, describing changes in inoculations, living conditions, and medical care that extended the human life span but also changes in dying, now often prolonged by technology. Another chapter, “How We Learned Not to Resuscitate,” relates how CPR, initially lauded and popularized, is now widely understood as futile care, especially in older people. Warraich discusses various attempts to define death (brain-based, heart-based, American Bar Association, Harvard Criteria, Uniform Determination of Death Act, even NASA) and some of the issues that still remain. 
 

Other chapters are more physiological:  “How Cells Die” explains natural processes of cell death (necrosis, autophagy, and apoptosis). Most non-medical readers haven’t heard of these and perhaps some medical personnel as well. Unaware of them as regular and usual processes, we resolutely expect people to live some four-score and ten, perhaps even more. The next-to-last chapter, “When the Plug is Pulled” discusses “terminal sedation” (a legal dosage that eases pain but is not strictly speaking euthanasia or murder) and statutes that allow for assisted death and removal of life-sustaining machines. The Nancy Cruzan case and others illustrate many difficulties. (Cruzan was in a persistent vegetative state and supported by a feeding tube. A 1990 U.S. Supreme Court 5-4 decision allowed the removal of the tube.) Warraich argues further for “patients’ right to demand and acquire the means to end their suffering with the aid of a physician” (p. 263).              

Lack of resolution of these difficulties leads to problems for families of the dying and all medical personnel attending them, especially in ICU situations. Living wills are often of no help and “the end of life has become a battleground” (p. 211).
He argues that surrogate roles for decisions at the end of a life often do not represent what the patient actually wanted because the surrogate's values may be different from the patient's and family members may not reach agreement on decisions. He concludes, “All in all, overinvolved family and underinvolved doctors unsurprisingly make for a particularly caustic combo” (p.214).                      

In “When Death Transcends” we read that spiritual and religious matters are often ignored in medical settings. Such resources, however, “may be the only means that patients have of finding comfort” (p. 148). Warraich surveys various religions, including his own, Islam. This is one of the longest chapters in the book and carefully considers the wide range of faiths people have and the regrettable lack of training for doctors in this area.
           

Warraich concludes, “Death needs to be closer to home, preceded by lesser disability and less isolation” (p. 278). For deaths to be “truly modern,” we need to push past taboos and misunderstandings about death. 

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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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