Showing 1 - 10 of 287 annotations tagged with the keyword "Chronic Illness/Chronic Disease"

Histories

Guglani, Sam

Last Updated: Sep-18-2018
Annotated by:
Miksanek, Tony

Primary Category: Literature / Fiction

Genre: Collection (Short Stories)

Summary:

One British hospital. Seven days and nights. Plenty of perspectives from those who work there, train there, and are treated there. Over the course of one week (October 24 thru October 30), the characters in these connected stories spill their secrets and shame, tout their triumphs and tragedies. And the danger of professional and emotional exhaustion looms very large: "Maybe this is how doctors and nurses finally burn out. Past their failures, their hours, all their inhaled sadness" (p40). What ultimately triggers burnout is "the accrued weight of so many tiny things" (p41).

Readers are privy to the thoughts and sometimes nuanced actions of medical personnel - attending physicians, residents, a medical student, and nurses. The musings of a hospital chaplain, cleaning woman, medical secretary, hospital porter, and patients (a hairdresser and a farmer) are also divulged. But the protagonist is the hospital. More than a physical structure, it is a kind of human hive with many strata of workers, occupants, and those (MD's) at the top. The hospital is portrayed as "a place of brokenness," propped up with occasional promises of hope and the might of technology. But decay can be insidious as some physicians no longer appear capable of compassion or empathy.

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Annotated by:
Teagarden, J. Russell

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Andrew Solomon’s 2012 book Far From the Tree is a study of families with children who are different in all sorts of ways from their parents and siblings to degrees that altered and even threatened family functions and relationships. Years after its publication, director Rachel Dretzin collaborated with Solomon to produce this documentary based on his book. At the time of filming, the children were already adults or were well into their teens. The film looks at how the families came to accept these children and how they sought—with varying success—happiness.  

The documentary focuses on five family scenarios: homosexuality (Solomon’s own story); Down syndrome; dwarfism; murder; and autism. Anyone in these families or anyone who knew these families would never invoke the familiar idiom “the apple doesn’t fall far from the tree” when talking about these children. These apples fell far from the tree, and Solomon builds on that twist to the idiom to characterize the relationship between the affected children and their families as “horizontal.” By extension, Solomon characterizes the relationship of children who are not different from their parents and siblings in any appreciable manner as “vertical.” 

Only one of the original characters from the book appears in the documentary; the other families are newly “cast.” The film captures the lives of these families with all their challenges and successes, and intercuts footage from home videos the families provided. Dretzin also filmed interviews with parents and in some cases their children. The footage and interviews show how families evolved in their acceptance of their children and their situations as best they could. The best was still heartbreak for some, but real happiness was achieved for others. 

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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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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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