Showing 1 - 10 of 291 annotations tagged with the keyword "Chronic Illness/Chronic Disease"

Summary:

This is a gripping, informative, and well-researched book about human blood. An accomplished journalist, Rose George, covers a variety of topics, largely in the U.S., Britain, and Canada but also in Nepal, India, and South Africa. She describes many current issues, provides historical background, and speculates on future technologies, such as replacement of blood by other fluids. There are nine sections:

 “My Pint”  While the book’s title refers to the author's volume of blood, this chapter’s title refers to a single pint she is donating. We read about blood supply (donated and stored blood) in the U.S. and—by contrast—in India.

“The Most Singular and Valuable Reptile” refers to the leech. This arresting chapter describes both historical and  modern uses of leeches to gather blood from humans. She visits a company called Biopharm in Wales where leeches are raised and prepared for shipment to medical clinics and hospitals.  

 “Janet and Percy” is a historical chapter focusing on Dame Janet Maria Vaughan, a central figure in creating the Blood Transfusion Service in England during WWII and Percy Oliver, who guided its predecessor, the London Blood Transfusion Service.  

“Blood Borne.”  This chapter describes Khayelitsha, South Africa, “the ugly backside of Cape Town” (p. 100): a place of poverty, crime, rape, sexual predation, and HIV. While rich nations provide assessment and treatment for people with HIV, poor nations have many citizens infected with the virus and, over time, rising rates of infection. 

 “The Yellow Stuff” describes the plasma portion of blood; it can be frozen (as FFP) and used as a filler for bleeding or trauma patients. Unlike blood—which can only be given without payment—plasma can be collected from paid donors. It is a largely traded commodity, part of a multi-billion dollar industry worldwide. Plasma carries Factor VIII, a crucial protein for clotting blood; hemophiliacs lack this and are at risk for death by bleeding externally or internally. Some plasma has been tainted, for example by HIV.

“Rotting Pickles.”  In Western Nepal (and other places), menstruation is taboo. George writes, “We are in a minority among species, and among mammals, to bleed every month.” She reviews historical views of women’s periods, mostly negative. Worldwide, there are many taboos, but also some educational efforts for public health that are helpful in impoverished areas.  

 “Nasty Cloths.” This tells the unusual story of an Indian man named Muruga, “a poorly educated workshop helper” who became a leader in creating sanitary protection for menstruating women. Worldwide, the feminine hygiene industry is some $23 billion. George also reviews related history, including Toxic Shock Syndrome from tampons.  

 “Code Red.” Bleeding is often a fatal factor in trauma, even with the best efforts to transfuse blood into the patient, unit after unit. George observes open chest techniques at a resuscitation. She reviews breakthroughs in blood typing, component therapy, and “buddy transfusions.”  

“Blood like Guinness: The Future.” George starts with images from the past: vampires, human drinkers of blood, past and, even, present. She interviews a purveyor of the concept that “young blood” is healthier than older blood. Can there be, discovered or created, blood substitutes that also save lives? 

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Annotated by:
Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Biography

Summary:

In That Jealous Demon, My Wretched Health (subtitled “Disease, Death and Composers”), Jonathan Noble, a retired surgeon gives us the medical and psychiatric history of seventy classical music composers. Chapters are organized by illness, ranging from cancer to syphilis to alcoholism.  Famous composers such as Schubert and Shostakovich predominate, but many lesser-known composers, ranging from Jeremiah Clarke to Gerald Finzi, are also included.  

Mozart is one composer whose cause of death has long been the subject of controversy, and the various theories are comprehensively explored here. However, the author goes even further, developing a detailed medical case study of the composer beginning in childhood.  He examines the toll that Leopold Mozart’s exploitation took on his prodigy son’s constitution, what Wolfgang’s appearance in the surviving portraits has to say about his general health, and even whether he may have had Tourette’s Syndrome. Finally, the author ties all of this together, methodically refuting or confirming each diagnosis, offering far deeper analysis than one would expect to find in a standard biography.  

Another example, the case of Tchaikovsky, reads like a veritable whodunit. The composer’s activities during the last two months of his life are scrutinized, with the likely causes of death systematically disproven or confirmed.  

A list of composers who suffered accidental or violent deaths provides some surprises. You will learn that Lully accidentally stabbed himself with his conductor’s baton, and that Alkan may have been crushed to death by a bookcase upon pulling his Talmud off a shelf.

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Electricity

Fisher, Sukey; Higgins, Bryn

Last Updated: Jan-14-2019
Annotated by:
Teagarden, J. Russell

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Lily O’Connor is 30 something and working at a seaside arcade in northeastern England. She inherits some money from her mother’s small estate and wants to give her brother Michael his share. But, Lily lost track of Michael during their childhood after they were placed in separate new homes to protect them from the severe abuse their mother was inflicting on them. Michael has become a ne’er-do-well in adulthood, and so Lily’s search for him takes her through the dark alleys of London and puts her in the company of its dodgier inhabitants. 

A bigger challenge to Lily in her search and in her life more generally is her epilepsy. How she experiences epilepsy forms the more interesting and dramatic elements of the story. We see Lily have several seizures  in a variety of scenarios: before a date, on the subway, at a friend’s house, in a hotel room, and in a nightclub. We see how Lily senses them coming on as she says to herself:

Here’s the breath, 
here’s the breeze, 
here’s the shimmer…and I’m falling down the rabbit hole.

We see the ground in front of her becoming fuzzy but closer, then what looks to be her hand reaching out in front of her to lay a sweater down on the ground where she thinks she will land, and then the ground getting fuzzier still as she hits it. From the ground, we see that she can still make out some people bending down to help and others averting their gazes. As Lily loses all focus, hallucinations start, and we see her body floating among patterns of electrical bursts as she experiences them. Next we hear her scream before all goes dark and violent shaking starts. As she regains consciousness, we see what she sees, blurry at first and then as her surroundings come into focus. It may be the inside of an ambulance, a hospital room, or her apartment, where in anticipation of that possibility, she has painted on her walls: Don’t Worry Lily Home Bed Sleep SAFE NOW

As Lily goes into recovery after a seizure, the director takes us from Lily’s point of view to the point of view of bystanders. We see that as a result of these seizures, Lily often sustains bone fractures, lacerations, abrasions, puncture wounds, and bruises among other injuries. She goes about cleaning herself up in a manner that suggests a routine, something she expects. Nevertheless, the loss of time frustrates her.

I just lost 2 days. Chop it up. Chop it out of my life. All the outtakes. What would they look like if you put them all together.

Lily’s adaptation to her seizures and their consequences vexes the physicians she consults, which she does only when her medications are stolen and she needs new prescriptions, and when she is taken to the hospital after particularly bad seizures. These physicians want to get Lily onto newer and presumably better medications. She resists, saying to one of them,

All I want is my old meds back.You know when my scripts change, it messes with my head every time. If you wanna know why I’ve stayed on the old meds, it’s ‘cause I know who I am…You have no idea how new drugs change me, they make me feel like a ghost. Words fall out of my mouth like vomit. My brain, a lump of cold meat. Nah, I’m not doing it.

She decides to forgo all medications if she must move to a new regimen, but it doesn’t go well. Eventually she capitulates, adapts to new medications, and goes on with her life, or as she says, “Thrash, get up, get on with it.”

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A Mind Unraveled: A Memoir

Eichenwald, Kurt

Last Updated: Jan-02-2019
Annotated by:
Miksanek, Tony

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Kurt Eichenwald shares his experiences living with epilepsy in an electrifying narrative. Beginning with staring spells as a child and then later on generalized convulsions with loss of consciousness, he experiences as many as 4 seizures a week between the ages of 18 to 30. After that, the seizures become milder and less frequent. Coincidentally, his wife, father, and older brother are physicians and his mother a nurse.

Eichenwald describes his encounters with multiple neurologists, the best of them being Dr. Naarden. Unfortunately, other health professionals are portrayed as incompetent, careless, lacking empathy, or even unscrupulous. Multiple mishaps with prescribed anticonvulsant medications are chronicled – drug side effects, toxic levels of medicines, and a bout of bone marrow suppression. He suffers broken ribs, cuts and wounds, burns, and is even blanketed by deep snow due to seizures.

Eichenwald acknowledges the toll that epilepsy exacts on roommates, friends, and family. He admits to lots of fear and guilt. At one point, he seriously considers suicide by overdosing. Everyday life is hardly ever ordinary: “Now I was scared every day, checking where I stood for dangers, wondering when consciousness would disappear” (p157). A large section of his account details the discrimination he encounters at Swarthmore College in Pennsylvania in the early 1980’s. The school dismisses him because of his uncontrolled epilepsy. He successfully fights their decision and returns to graduate. Obtaining and holding a job is complicated by his illness, but Eichenwald becomes a journalist who works for the New York Times.




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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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