Showing 1 - 10 of 281 annotations tagged with the keyword "Chronic Illness/Chronic Disease"

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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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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Farinelli and The King

van Kampen, Claire

Last Updated: Mar-21-2018
Annotated by:
Teagarden, J. Russell

Primary Category: Performing Arts / Theater

Genre: Theater

Summary:

Anyone walking through a theater district over the past several decades and even centuries ago would likely run into a mad king—Lear, Richard III, George III, Scar. As of 2015, there’s a new mad king to be found in theater districts—King Philippe of Spain in Farinelli and the King.  

The play opens with King Philippe of Spain sitting up in his bed talking to a goldfish swimming around in its bowl trying to avoid the hook at the end of the King’s little fishing pole: 


I was touched by the confidence with which you speak to me of your affairs; the cordiality of your offer to redress mine; the tender anxiety for my health—but I should tell you in the strictest confidence you understand…shh…here the body cares very little for the affairs of the mind. (Act 1, Scene 1)   

As the King’s mental illness progresses from this point and becomes a concern of his court, his wife, Queen Isabella is sent away so that the King cannot physically harm her as he had before. But, what’s to be done for him? It’s the year 1737. While attending an opera in London, the Queen thinks she may have discovered just what the King needs—the renowned castrato Farinelli: 


Then…he began. A long note, held; I must think it was beyond a minute. A swooping, soaring sound and the notes were above the tree-tops, bird-like, unimaginable. When the aria finished just now I couldn’t help my tears; I was unable to move; I just stared at the stage, where he had been…I couldn’t believe what I had seen and heard…I felt something had profoundly changed within me. …and then, —I knew…That I must hope somehow to bring Farinelli to Spain with me. (Act 1, Scene 3)    


The Queen finds a way to bring Farinelli back to Spain, and Farinelli begins to sooth the mad King with his voice from the heavens. The King becomes calmer yet when he moves with the Queen and Farinelli to a house in the forest, where he cuts a hole in the trees so he can hear the “hidden notes” of the spheres above. The King tells Farinelli, “you must sing to me; in the long hours of dark, when my mind is screaming in the silence, then that is when I need you to sing to me.” (Act 2, Scene 5)  

The Queen was sure Farinelli’s singing was effective:

And they say it was Farinelli that helped to restore the health of the King of Spain—just by hearing this wonderful singing voice the King rose out of his depression and wanted to live again! It was the only thing the King could bear in the end. The sound of Farinelli’s voice. (Act 2, Scene 5)  

In Farinelli’s own and immodest assessment: “He is decidedly better because of me, and in his lonely life I have become a song he now depends on.” (Act 2, Scene 1) And, in making his clinical assessment, the King’s doctor was “of the opinion that the King’s illness has turned." (Act 1, Scene 4)  

The utopian existence comes to an end when the King is called back to Madrid to take on an impending English invasion. He would not be seen again.  

This fanciful tale is not so fanciful; it’s drawn from the historical King Philippe of Spain. His grandfather, King Louis XIV of France placed him there, and there he reigned for almost 50 years. Indeed he was mad, and indeed his wife the Queen brought the renowned castrato Farinelli back to Spain where he served the King for 9 years and then the son who succeeded him until this son’s death. From there Farinelli retired to the Italian countryside instead of returning to the public stages in Europe.  

The current NY production  could not replicate Farinelli’s voice exactly now that castrati are not to be found anymore; however, a countertenor was able to produce a swooping and soaring sound. Though Farinelli’s voice could not be replicated perfectly, the staging of the play was replicated as the audience of the day would have seen it in the mid 1700s. The lighting was supplied by candlelight from chandeliers and sconces that were part of the sets. The musicians supporting Farinelli’s performances were also situated on the stage with him. And, as the theaters were arranged then, seats for the audience were available on both sides of the stage. 

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Spy of the First Person

Shepard, Sam

Last Updated: Jan-30-2018
Annotated by:
Glass, Guy

Primary Category: Literature / Fiction

Genre: Memoir

Summary:

Spy of the First Person is a short semi-autobiographical narrative about a man with a debilitating condition.  He spends most of his time sitting in a wheelchair on his porch, goes for tests to the Arizona campus of the Mayo Clinic, and has a “handicapped sign hanging from the rearview mirror of his car” (p. 15). The man’s illness is unnamed, but we learn that his motor skills are grossly impaired: “His hands and arms don’t work much.  He uses his legs, his knees, his thighs, to bring his arms and hands to his face in order to be able to eat his cheese and crackers” (ibid).   

The story is told from various, shifting points of view.  At times we are in the head of the protagonist.  At other times, the perspective is that of a nosy neighbor who peers at the sick man through binoculars, hence the book’s title. There is a parallel narrative about an elderly couple and the wife’s gradual decline in health.  The Southwest plays such an important role here one might even say that it too is a character. 
 

There are also frequent shifts of tense.  It is not always clear whether we are in the past or present.  We alternate between the central character’s fantasies, memories, and observations. The effect of intertwining voices and tenses is reinforced by the brevity of the chapters, many no longer than a paragraph.  The overall impression is that while he may no longer have full control over his body, the man has retained an active (one might say overactive) mind.
 

Spy of the First Person
concludes as the man’s children take him to a Mexican restaurant.  The vivid description of a meal shared with his loved ones provides a sharp contrast to the inner thoughts that provide the bulk of this book.

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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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Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Victoria Sweet describes her training in medical school, residency, and work in various clinics and hospitals. From all of these she forms her own sense of what medical care should include: “Slow Medicine” that uses, ironically, the best aspects of today’s “Fast” medicine.   

Her dramatic “Introduction: Medicine Without a Soul” describes poor—even dangerous—care given to her elderly father at a hospital. An experienced physician, she calls Hospice and saves him from a “Death Express” the hospital has “quality-assured” (pp. 6, 8). 
 
The book continues with 16 chapters in chronological order. The first ten describe Sweet from a late ‘60s Stanford undergrad and “a sort of hippie” (p.14), next a learner of “facts” in preclinical studies at Harvard, plus the clinical rotations (including Psychiatry, Internal Medicine, Pediatrics, and electives), then an internship as a doctor and her work in various clinics and hospitals. Throughout she’s collecting skills, concepts, even philosophies (Jung, feminism, Chinese chi, value of stories). She also describes particular patients important to her learning. She dislikes “just good enough” medicine at the VA (p. 95), “unapologetic budgetarianism” (p 141), medicine that is reductive and uncaring, and futile care for dying patients.  

Halfway through, we find an “Intermission: In which Fast Medicine and Slow Medicine Come Together.” With a year off, Sweet signs on as physician for a trekking group headed for Nepal. Unexpectedly, she treats an Englishman in the Himalayas. Returning home, she treats a man whose pulse is declining and rides a helicopter with him to a hospital. She realizes that she can take on the full responsibility of being a doctor, including when to use Fast medicine and when to use Slow.  

The following chapters deal with the 1980s emergence of AIDS, a hand injury to Sweet (she sees herself as “a wounded healer,” p. 182), her new understanding of medicine as “A Craft, A Science, and an Art” (Chapter 12) and conflicts between medical care and economics-driven medicine (“checked boxes,” administrators, quality assurance, even outright corruption).  She scorns use of the labels “health-care providers” and “health-care consumers” (p. 211) and discovers Hildegard of Bingen’s medieval vision of medicine. She works for 20 years at Laguna Honda, the topic of her earlier book God’s Hotel (2012). Chapter 16 closes the book with “A Slow Medicine Manifesto.”  

Sweet pays tribute to her teachers, both in a dedication to the book, and throughout the pages: professors, preceptors, nurses—especially a series of Irish Kathleens—and patients. There are some 20 case studies of patients throughout the book, their medical dilemmas, their personalities, and Sweet’s Slow Medicine that involves creating a healing relationship with them, finding the right path for treatment, even watching and waiting.

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Summary:

This powerful—even disturbing—book examines the state of Louisiana, a home of the Tea Party, multiple polluting industries (oil, chemicals), environmental degradation, bad health for all, including children, and politics and economics that favor corporations not local business. 

In Part One, “The Great Paradox,” sociologist Hochschild interviews locals, attends civic events, sits in cafes, and listens to stories. Bit by bit she understands that right-leaning people believe in Republican notions of less governmental regulation despite suffering from the ill effects of living in “red” states, even individual counties, that are the most polluted in the U.S. (pp. 79-80).  She calls this disparity “the great paradox.” Locals call a portion of the Mississippi between Baton Rouge and New Orleans “Cancer Alley” (p. 62), but there is no popular demand for control of pollution.

Part Two, “The Social Terrain” discusses history. Earlier, Louisiana had economies of fishing and farming in tune with the landscape. New industries, including Big Oil changed all that, with promises of jobs and wealth for all—neither of which occurred, because oil is largely mechanized, and wealth went to corporations, some headquartered in other countries. Further, there was not just pollution but also large sinkholes and the BP Horizon blow-out of 2010. Problems of on-going pollution were ignored by the Press, especially Fox news, and the “Pulpit” (evangelistic Christianity) took the longer view, urging continued human exploitation of nature, patience for ultimate rewards, and the hope that “the rapture” would ultimately save the most worthy Christians.

Part Three is “The Deep Story and the People in it.” Hochschild formulates an unspoken but motivating narrative of values in Louisiana. This metaphoric story represents deep feelings, including urges for a success that is always thwarted. In the story, there is a long line of white, Christian people, mostly male, often with limited education, waiting in line patiently to climb a hill. On the other side is a good job, wealth, security, and reward for the long waiting. Tragically, there are “line cutters,” symbolized by President Obama and other blacks who had various preferments, but also women, also immigrants, also refugees, even the brown pelican, the Louisiana state bird that needs clean water and fish to survive. The people in line feel betrayed. Where is progress toward the American Dream? Fair play? There is hatred toward the line cutters, and loyalty toward the similar people in line and the industries that will save them. Pollution is unfortunate but a necessary cost.

“Going National” is the fourth part. Hochschild reviews the plantations of the South that not only brutalized slaves but also caused poor whites to move to non-productive land, while the wealthy always improved their lot. People from the North were (and are) suspect, with policies of integration, abortion, gun control, etc. The North cut in line. People in Louisiana became “strangers in their own land” and therefore glad to support not only Governor Bobby Jindal (who “left the state in shambles,” p. 232) but also Trump who would “make American great again.” The “strangers” have gone national in the U.S. and even in some other countries. Hochschild drafts two short “letters,” one to the liberal left and the other to the Louisiana people. She suggests that the two polarized groups have more in common than they currently imagine.  



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Annotated by:
Natter, Michael

Primary Category: Literature / Nonfiction

Genre: Graphic Novel

Summary:

Taking Turns, Stories from HIV/AIDS Care Unit 371, is a graphic novel written and illustrated by nurse and artist, MK Czerwiec. In it, she details what it was like to be a nurse during the AIDs epidemic in Chicago in the 1990s. The book, however, is much more than a story about AIDS care during that time. Czerweic tackles patient/provider relationships, boundaries, hospital struggles, the role of art in medicine and healing, but most profoundly: death and dying. 

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Eros and Illness

Morris, David

Last Updated: Oct-31-2017
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Several threads tie together this ambitious, beautifully digressive reflection on eros and logos in the experience of illness and the conduct of medicine and health care, which takes into account what a complex striation of cultural legacies, social and political pressures, and beliefs go into both.  Framing his reflections on the role of unknowing, altered states, inexplicable events, desire, hope, love, and mystery in illness and healing is a fragmented, poignant narrative of Morris’s own experience of watching his wife succumb to the ravages of early Alzheimer’s. 

Her disease is one that leads both professional and intimate caregivers to the same question:  what do you do when there’s nothing left for scientific medicine to do?  Conversations about palliative care are broadening, he points out, and medical education is making more room for the kind of reflection the arts invite and for spirituality as a dimension of illness experience and caregiving.  Guidance in such explorations can be found in ancient literature, especially in the archetypes provided by the Greek and Roman myths.  Morris makes astute and helpful use of his own considerable training in literary studies to provide examples of how eros and logos—complementary contraries—have been conceived and embodied in a somewhat polarized culture and how incomplete health care is when it doesn’t foster the capacity to dwell in and with unknowing, possibility, indeterminacy, and mystery.  Knowing the limits of scientific medicine may, paradoxically, make it better.  Certainly it can help keep our engagements with illness—always relational, always disruptive, most often to some degree bewildering—humane.




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Summary:

This engaging memoir describes Pearson's medical training at the University of Texas Medical Branch (UTMB) on Galveston Island from 2009 to 2016. During these years her personal values become clear, and she finds fault in her training, in medicine as practiced in Texas, and even in her own errors in treating patients.

Having left a graduate writing program, Pearson took a "postbac," a year of pre-med courses in Portland, Oregon. She interviewed at medical schools "all over the country" and writes satirically about them; she concludes "nothing out of Texas felt quite right," having lived there and done her undergraduate work at University of Texas at Austin. She's a Spanish speaker with a working-class background. When her classmates provide the annual “white-trash”-themed party, she wonders, “do I go as myself?” (p. 21).

Pearson's education continues on three tracks: the formal UTMB courses in medicine, a simultaneous Ph.D. program at the Institute for the Medical Humanities at the University of Texas, and her volunteer work at the St. Vincent's Student Run Free Clinic. The Ph.D. program is off-stage, not mentioned, but the St. Vincent's Clinic becomes pivotal to her development as a doctor and a moral person.

As for medical school, she finds the relentless "truths of biochemistry and anatomy" so reductive that the suffering of people and surrounding politics seem "not to matter at all" (p. 70). Among the politics are: the lack of safety nets for poor people, the use of uninsured (including prisoners) for students to practice on, failures to extend Medicare, pollution (notably from the oil industry), losses of charitable care, and income disparities that include crushing poverty for many. Something of a rebel, she writes that medical school "felt like junior high" (p. 44). She does enjoy the "clinical encounters" with real patients.

St. Vincent's, by contrast, was “a relief.” Her pages sparkle with her conversation with clinic patients, some homeless, all poor, and all suffering. She reports--confesses, she even says--her errors that had consequences for patients. She writes that errors are an unavoidable part of medical education, but that it's wrong that they should routinely happen to the poorest members of society.  

Chapter 8 discusses depression, which she felt after the second year. She writes about high rates of suicide among medical students and doctors; indeed a close friend killed himself during the "post-doc" year. Because some states require doctors to report psychiatric care, some doctors avoid such care. This consequence “drives a suicide-prone population away from the help we may need" (p.92).

The last two years are the rotations through specialties: surgery, dermatology, trauma, rural medicine, neurology, internal medicine, and so on. These are clearly and insightfully described. In one case (internal medicine), she allows the reader to see the irony of a doctor providing hair removal by laser, diet foods, and Botox treatment for wrinkles, “a pure luxury transaction” (p. 183).

Pearson describes the storms, hurricanes, and floods that hit Galveston Island, also the pollution from the oil industry that causes a “cancer belt” along the Louisiana and Mississippi coasts (p. 104).
At last she finishes her program, understanding that her identity is simultaneously a person, a physician, and a writer (p. 248). 

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