Showing 1 - 10 of 284 annotations tagged with the keyword "Chronic Illness/Chronic Disease"

Annotated by:
Perkins, Sam

Primary Category: Literature / Nonfiction

Genre: Longform journalism

Summary:

Olivia Laing, a British novelist and writer on cultural and social issues, tackles the phenomenon of loneliness as a pervasive condition that is both a symptom and a cause of malaise, dysphoria and depression. The book is thoroughly referenced and has an extensive, useful bibliography. Laing begins by describing her own loneliness when she moved to New York City. Somewhat reclusive by nature, she spent hours in her apartment, connected to  the outside world through social media, email and Skype. This leads her to examine the nature of loneliness, its causes and impact on the individual. She then turns to the lives and works of artists who specifically dealt with their own loneliness -- as inspiration, subject matter and personal burden: Edward Hopper; Andy Warhol and his assailant Valerie Solanas; the artist and AIDS activist, David Wojnarowicz; outsider artist, Henry Darger; singers Klaus Nomi and Billie Holliday; tech entrepreneur, Josh Harris, and painter Jean-Michel Basquiat. Laing weaves in pertinent research (Klein, Harlow, Bowlby, Ainsworth, Weiss, Turkel) and expertly ties their findings to her subjects’ creative lives. Her section on Josh Harris’ radical social media experiments is a pertinent reminder of technology’s role in fostering loneliness. A recurrent theme is that social isolation “leads to a decline in social sophistication which itself leads to further episodes of rejection.” Among the results, she says, are that lonely people are more susceptible to sickness and more likely to die before their time.  


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The Center Cannot Hold

Wells, Kenneth

Last Updated: Jul-31-2018
Annotated by:
Glass, Guy

Primary Category: Performing Arts / Theater

Genre: Theater

Summary:

This is an opera based on Elyn R. Saks’s best-selling book The Center Cannot Hold.  Subtitled “My Journey Through Madness,” the memoir recounts the author’s struggle with schizophrenia.  Here, Saks has collaborated with composer/psychiatrist Kenneth B. Wells on the opera’s libretto.  

The librettists utilize the device of having three different singers portray Elyn.  One manifestation, the “Lady of the Charts,” represents her when psychotic.  The others are Elyn as a law student and the present day Professor Saks as a law professor.  Another dramatic device involves the use of a chorus to embody the protagonist’s schizophrenic delusions.  At the height of her paranoia, as Elyn sings Beethoven’s 5th Symphony in an effort to keep herself together, the chorus recalls the Symphony’s opening notes by singing “Elyn must die.”  

The opera opens with Elyn as Professor Saks reflecting on her childhood. Even then there were signs of the illness that, to quote a famous poem by William Butler Yeats, ensures “the center cannot hold” in Elyn’s life. During the first act, Elyn, a Yale law student, becomes psychotic in front of her friends and is hospitalized. In a Connecticut hospital she is put in restraints and treated by various mental health professionals. She imagines she hears demons threatening to kill her.  Elyn’s diagnosis and condition overwhelm her parents, who have been called by the hospital.  

In the second act, Elyn works to reintegrate her fragmented mind.  She is determined to get back to law school.  She is released from the hospital. She finds an antipsychotic medication, with fewer side effects, that she can live with. She resolves to devote her career to mental health law.  At the conclusion of the opera, Elyn anticipates graduation.  She has been instrumental in winning a class action suit against the use of restraints in psychiatric patients.  Her parents, friends and doctors proclaim their pride in her accomplishments.

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Summary:

This entertaining and wide-ranging book discusses the importance of the human foot and many related topics. There are five alliteratively named chapters.  

1. Destiny

Drawing on anthropological research, Rinzler discusses the deep history of humans and their primate ancestors. Our bipedalism—our upright stance—preceded our large brain, making possible a larger diet and working well with our bodies as they evolved away from other primates. She discusses the idealized ratios of Leonardo’s Vitruvian man. Leonardo considered our foot as “a masterpiece of engineering and a work of art” (p. 6).  

2. Disability
Rinzler discusses historical senses of disability, notably clubfoot. She mentions various people with a clubfoot:  Joseph Goebbels, Sir Walter Scott, King Tut, Cludius I, Dudly Moore, Kristi Yamaguchi, and Mia Hamm; the last are two successful athletes. Rinzler reviews the history of surgical approaches, many of which were harmful. X-ray and sonography provided new insights, and genetics may have further promise, given that families and ethnic groups often have higher instances of clubfoot.  

3. Difference
This chapter describes the anatomy of the foot, bones, arches, tendons, and on as well as artistic representations and, of course, ballet and other forms of dance. A footprint is as individual as the much-used fingerprint. In Nazism and the American south, a flat foot was discriminated against as Jewish or Negro. Various treatments have been proposed for flat feet.  

4. Diet
Gout has been known since antiquity, but only in modern times has the underlying biochemistry and, now, genetic heritage been understood. The chapter mentions many famous names of people who suffered from gout. rheumatism, or corns. The closing pages discuss pharmaceutical approaches.  

5. Desire
The foot as sexual symbol: Rinzler discuss folklore (Cinderella’s slipper), pheromones, and Biblical topics: God’s feet, footwashing, and feet as symbols for sex and urination. Foot fetishism can be understood in terms of the lavish sensory innervation that links to our brain. Discussion mentions the bound feet of China, the folktale The Red Shoes, also Fifty Shades of Grey, Sex and the City, and Judy Garland’s red shoes in The Wizard of Oz

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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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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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