Showing 1 - 10 of 331 annotations tagged with the keyword "Chronic Illness/Chronic Disease"

Barefoot Doctor: A Novel

Xue, Can

Last Updated: Sep-06-2022
Annotated by:
Miksanek, Tony

Primary Category: Literature / Fiction — Secondary Category: Literature /

Genre: Novel

Summary:

Yun Village, China is a remote town near the mountains. Its 2,438 inhabitants are mostly poor but remarkably optimistic and stoic. Ancestors from the spirit realm visit the hamlet and roam the mountainside. The living and the dead appear to communicate with relative ease. Mrs. Yi (Chunxiu), more than fifty years old, is the village's vibrant "barefoot doctor" - an essentially self-taught healthcare provider with only six months of formal medical training under her belt. Yi's husband is quite supportive of her work. Their only child died at age two.

Yi is revered for her knowledge, patience, and compassion. Most afflictions she treats are chronic diseases, but Yi also delivers babies, cares for children with measles, and counsels a woman who attempted suicide. The therapeutic benefit of attentive, concerned listening along with reassurance are evident in her interactions with patients.

Traditional Chinese herbs, acupuncture, and Western medicine are all in the healer's armamentarium. Yi cultivates herbs and also forages on the mountain for other useful plants. She supposes, "Sickness and herbs are lovers" (p244). As Yi grows older, the need for a successor - a devoted, younger barefoot doctor - is always on her mind. She successfully identifies candidates, then inspires and mentors them.


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Annotated by:
Dammeyer, Kristen

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Life According to Sam provides insight into the life of Sampson “Sam” Berns and his family. At the beginning of the film, Sam states, “I want you to know me.” Accordingly, the film alternates between highlighting Sam’s experiences as he navigates life as a teenage boy and his participation in the first ever clinical trial for progeria.  At the start of the film, Sam is a 13-year-old boy in middle school. As with many other boys his age, his interests include Legos, music, and spending time with his friends, or his “bros” as he affectionately calls them.  

But Sam was diagnosed with progeria just prior to his second birthday. Progeria is a rare disease that affects approximately 250 children worldwide, caused by a genetic mutation which codes for the formation of an abnormal toxic protein, protegrin, that builds up in organs over time. It is a premature aging syndrome that causes progressive cardiovascular decline and for which there is no cure. The average age of death for these children is 13, and they die primarily of heart attacks and strokes.  

At the time of Sam’s birth his mother Leslie was a pediatric intern and his father, Scott, a pediatric emergency medicine physician. After his diagnosis, the family devoted themselves to progeria, an orphan disease which at the time had no identified genetic etiology, no foundation, no research, and no treatment. With the help of Leslie’s sister Audrey, the family started The Progeria Research Foundation, which raised over $1.25 million dollars, funded the discovery of the gene for progeria, and began the first clinical trials to test treatment for the disease. 

In the film, Leslie spearheads the first ever clinical trial for the treatment of progeria. The drug, lonafarnib, had demonstrated efficacy in mice and was FDA approved for a clinical trial including 28 children from 16 countries. The children would receive the medication for 2.5 years and return to Boston Children’s Hospital three times per year for a battery of tests. At the end of the trial, Leslie goes through the arduous process of writing up the results and submitting the trial for publication in hopes of making the drug more widely available for children with progeria. In the end, the trial results are published and the results for individual patients are released. While the medication falls short of being a cure, there are glimpses of hope in patients whose disease progression has been slowed or even reversed.

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Summary:

In Sweden, hundreds of children lie unconscious for months or even years in their homes or hospitals. Full neurologic evaluation, including MRIs, EEGs, and other studies reveal no abnormalities.  None of these children are Swedish. They are immigrants from the Near East or former Soviet republics, whose families are seeking permanent asylum in Sweden. If asylum is granted, the children gradually recover. Neurologists have named this mysterious illness “resignation syndrome” and classified it a functional neurological disorder.  

Suzanne O’Sullivan, an Irish neurologist, set out in 2018 to study children suffering from resignation syndrome, a project that led her to investigate other outbreaks of mysterious illness around the world. In The Sleeping Beauties, O’Sullivan discusses many such disorders, ranging from grisi siknis in Nicaragua (convulsions and visual hallucinations) to a form of sleeping sickness in Kazakhstan. These disorders have several features in common: absence of findings on medical and psychiatric tests, contagiousness (i.e. they seem to spread rapidly among populations in close contact), and significant morbidity.  

Dr. O’Sullivan notes “there is a disconnect between the way mass psychogenic disease is defined and discussed by the small number of experts who study it and how it is understood outside those circles.” (p. 257) The public finds reports of such illnesses difficult to believe. In the United States, we tend to believe that such illness, if it exists at all, occurs only in “backward” cultures and not in our enlightened society. On the contrary, the author presents “Havana syndrome,” as a case of mass psychogenic disease that first appeared among American diplomats in the Cuban capital in 2016. No consistent brain abnormalities have ever been found, and extensive study has ruled-out the possibility of a sonic weapon.  Dr. O’Sullivan believes that Havana syndrome is very likely a functional neurologic disorder occurring against “a background of chronic tensions within a close-knit community.” (p. 257)

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Annotated by:
Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The Urge: Our History of Addiction, by Carl Erik Fisher, a psychiatrist, is really two books in one.  It is a comprehensive history of addiction from ancient times to the present day.  It is also a memoir of the author’s own struggle with addiction and an attempt “to understand how I went from being a newly minted physician in a psychiatry residency program…to a psychiatric patient” (p.ix).  

Fisher has grown up with two alcoholic parents.  Even as his mother’s drinking “suppresses her blood counts and causes her to miss the chemo sessions I have worked so hard to arrange” (p. 294), she does not stop.  Fisher’s own first drink, in high school, is a revelation.  He blows his interview for his first-choice college when he shows up late and hung over. His intelligence enables him to get by, but eventually the problem catches up with him as he begins to use Adderall and marijuana to counteract the effects of alcohol.  After sleeping through and missing his residency orientation, he is under scrutiny.  Finally, he has a drug-induced manic episode that results in his being tasered by the police, and he is forced into treatment.    

In the historical sequences of the book, we discover that one of the oldest known examples of addiction is found as far back as the Rig Veda (1000 BC).  From there we move through time, learning how Native American populations were devastated by alcohol, how Alcoholics Anonymous achieved prominence, and about the multiple challenges that persist to the present day. 

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Annotated by:
Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Five years into writing about her mother’s slow decline from a respiratory illness, Joanne Jacobson was diagnosed with a rare, life-threatening blood disease. That discovery dissolved the illusion that she and her mother had separate fates. “How could I continue writing about my mother as though I were observing her from outside the circle of Illness?” Jacobson asks (27). She can’t. And Every Last Breath becomes, as its subtitle discloses, “A Memoir of Two Illnesses.” Doubling its concern, Jacobson’s memoir in essays becomes a richer, more urgent, and ironic revision of her original project.  

With writerly attentiveness, perceptive intelligence, and some impatience, the four opening essays witness the negotiations that Florence Jacobson makes with her body, her environment, and her psyche. From a distanced perspective, Jacobson wonders at her mother’s courage and stubborn animal will to go on. Her mother’s slow pace and reluctance to let go—of her possessions, her habits, her life—initially frustrate and puzzle Jacobson. She even expresses impatience with the constant sound of her mother’s oxygen pump filling the apartment, the inconvenient bulk of the oxygen canister, the tangles of tubing connecting the machine with her mother’s nostrils. 

 As Jacobson’s diagnosis closes the distance she perceived between herself and her mother, it ignites the memoir’s transformative insight. It’s first articulated at the end of the essay titled “Mirror Writing” and it sustains the rest of the memoir. Realizing that her mother might outlive her, Jacobson writes: “. . . I can no longer pretend that the ragged approach of death is likely to be smoothed by nature’s grace, or by the natural order. So long as I believed I was writing about my mother, I was able to hold mortality at a distance . . . Now in the mirror of my mother’s aging face I see myself” (29). In “Dead Reckoning,” when Jacobson learns that her blood is starved for oxygen, she hears her “own lungs fall into the thrumming motor’s pulse” of her mother’s respirator. Revising her response to the technology, she writes that it is “the sound of death being pushed mechanically away that is audible to me now—steadily asserting its nearness . . .” (63-4). Jacobson’s descriptions of her hospitalizations and treatments (“Written in Blood,” “If My Disease Were an Animal”) take her on solo flights toward her new understanding of herself and the “call to the imagination” that her experience issues (59). Jacobson’s elegant and vulnerable rendering of her efforts to survive pain, uncertainty, and terrifying treatments register her own courage and will to go on.  

The final essays bring the shared destinies of daughter and mother together. Jacobson thinks of them as “invisibly entwined, cellular,” as she recalls that mothers’ bodies can absorb their fetuses’ cells (88). In “Book of Names,” Jacobson’s closing essay, she and her mother read out the names in Florence’s heavily edited address book, tracking the alterations in the circumstances of those whose lives she’s shared. It invokes the lists in Genesis. Begotten. Then gone.

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One Friday in April

Antrim, Donald

Last Updated: Feb-08-2022
Annotated by:
Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

As One Friday in April opens, we find Donald Antrim in an agitated state on the roof of his Brooklyn apartment building.  He paces, and alternately climbs down the fire escape, hangs from the railing, and lies on his stomach peering over the ledge.  Repeated outpatient courses of psychotropic medication and psychotherapy have done only so much for his deteriorating mental state, and the situation has come to a head. Disheveled and wild-looking, he manages to return home whereupon his friends take him to a psychiatric hospital.  

A MacArthur Fellow and author of several acclaimed novels, Antrim has previously published a memoir of his upbringing with his alcoholic mother.  In this new memoir, flashbacks of childhood neglect and chaos are juxtaposed with the present day as he takes the reader through the acute phase of his illness:  a lengthy hospitalization, a course of ECT, discharge from the hospital, rehospitalization, and eventual stabilization.   

The author considers his condition to be suicide, noting that “depression is a concavity, a sloping downward and a return.  Suicide, in my experience, is not that.  I believe that suicide is a natural history, a disease process, not an act or a choice, a decision or a wish…I will refer to suicide, not depression” (pp. 14-15).  

The book ends on a hopeful note. After several relationships that might be described as codependent, Antrim meets his current partner, whom he marries.  He sees the roof of his building through his window and remembers a certain Friday in April but is comforted by the sound of his wife playing Chopin and Bach on the piano.  

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Seeing Red

Meruane, Lina

Last Updated: Jan-31-2022
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Before it happened there was the dread of it. “They were brittle, those veins that sprouted from my retina and coiled and snaked through the transparent humor of my eye,” says Lina Meruane, the first-person narrator and main character. If those veins burst, Lina could go blind. All that can be done to prevent such a disaster she’s told, “is to keep watch day by day over its millimetric expansions...keep watch over the sinuous movement of the venous web advancing toward the center of my eye.” Adding to her dread are “impossible admonitions to follow.”
Stop smoking...don’t hold your breath, don’t cough, do not for any reason pick up heavy packages, boxes, suitcases. Never ever lean over, or dive headfirst into water. The carnal throes of passion were forbidden, because even an ardent kiss could cause my veins to burst. (p. 5)
And then, “it was happening. Right then, happening” (p. 3). She had only bent over to retrieve a syringe for her scheduled insulin injection. She’s paralyzed. “I didn’t straighten up or move an inch, didn’t even try to breath while I watched the show. Because that was the last thing I would see, that night, through that eye: a deep, black blood (p. 4).

Lina is in the dissertation stage of a PhD degree at a New York City university. The story veers from this pursuit to one of restoring her eyesight. The other primary characters are Lina’s Galacian love interest and fellow academic, Ignacio, who shepherds her through this journey, her New York retinal specialist, Dr. Lekz, and her parents who are both physicians—her father a cardiologist, her mother a pediatrician—practicing in Lina’s native country, Chile.

Soon after the bleeding incident, Lekz tells Lina that at least a month would be needed for her eyes “to clear up so I can take a look at this mess” (p. 32). “Weren’t you going to go to Chile to see your family? Go to Chile. Take a vacation” (p. 33). The story relocates from New York to Santiago, and from Lina’s medical problems to her familial dynamics—“I never wanted you to be my doctor, it’s enough for you to be my father” (p. 50). The visit also becomes a time for Lina—and Ignacio—to see what life might be like if she never regained full sight, and to contemplate options for such an eventuality. She had become “an apprentice blind woman” (p. 20).

Lina and Ignacio return to New York city for the hoped-for reparative surgery. The procedure produces promising signs, but Lina must wait at least the four weeks it takes for Helium gas bubbles to dissipate so Lekz can see the results. During this period, Lina tries to keep her head position down and her spirits up. Often the opposite resulted. Before four weeks passes, however,
Blood, again, in my eye. A fine thread of blood that comes from I don’t know where...I’m watching as the eye watches its thread of blood, looking at everything without ceasing my cries: I’m bleeding I’m bleeding again. (p. 142)
Futility looms, “knowing they were going to operate on me but that no cure existed” (p. 113).  Lina and Lekz consider their options. After Lina’s initial bleeding incident, Lekz had “dropped the phrase transplants in experimental stages” (p. 5). The idea stuck with her. She had spoken about it separately with her mother and Ignacio. Both were fraught conversations. Nevertheless, Lina and Lekz return to the topic.

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Nervous System

Meruane, Lina

Last Updated: Dec-13-2021
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Ella needs time for finishing her doctoral dissertation on black holes she has been writing for years and thinks an illness could provide the time: “Just enough to take one semester off, to not have to teach all those planetary sciences classes to so many distracted students whom she had to instruct evaluate forget immediately (p. 6). Before she can decide which illness would best suit her purposes, a mysterious illness finds her.
 A sudden cramp shoots down the spine and then, stillness... (p. 9)
An unbearable stinging had settled into her shoulder neck ember... (p. 10)
She felt an invisible wound wrapping her up and suffocating her... (p.10)
A slight numbness that starts in the shoulder and extends along the arm to the elbow until it reaches the back of her right hand, the fingers where it all started. (p. 12)
Inflammatio. In flames. En llamas. Ardor without romance. (p. 10)
Quickly, then, the story shifts from Ella’s dissertation odyssey to her diagnostic odyssey. As she makes her way along this journey during the first chapter, other characters come into the picture: El, Ella’s long-term boyfriend and forensic scientist, is one. The others in her family history are “the Father,” “the Mother,” “the Brother,” and “the Twins”—none are ever named (neither, really, is Ella or El because they are “she” and “he,” respectively in Spanish). Except for the Twins, each of the subsequent four chapters center on one of these characters and how they figure into the family history. Just as in the first chapter, the stories are told through and around the health challenges each character faced; all harrowing, many life-threatening, and some metaphorical.

Ever present in these histories is the story of Ella’s birth mother,“genetic Mother”. She died giving birth to Ella. Ella’s stepmother, “the Mother,” is called at different times, “the volunteer Mother,” “the replacement Mother,” and “the living Mother.” The Brother, alternatively known as “the Firstborn,” shares with Ella her birth mother and was born nine years before her. The Twins, known separately as “the Boy Twin” and “the Girl Twin,” came after the Father remarried. Another dimension shaping the stories is both the Father and the replacement Mother work as practicing physicians. 

Ella’s prominence in each chapter makes her our witness to El’s recovery after an explosion rips through his mass grave excavation site, and his many surgeries for separate gastrointestinal troubles; the Mother’s aggressive and brutal breast cancer treatment; the Firstborn’s recurring bone fractures (an “osseous enigma”); and the Father’s bleeding ulcers and life-threatening hemorrhagic complications from prostate surgery. 

The author, Lina Meruane, structured the book in a somewhat unconventional form. She delineates sections within each chapter with asterisks centered on the page (“***”), and these sections rarely comprise more than two paragraphs. Dialog is neither separated from other text nor signaled with quotation marks. The text moves back in forth in time, from here to there in place (presumably somewhere in South America), and sometimes takes the form of pensées rather than plot narrative. But, overall, the book moves towards resolving some mysteries surrounding family history.

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Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Nonfiction

Genre: History

Summary:

In a 1976 Archives of Neurology essay, the neurologist Robert Katzman successfully argued for relabeling “senility” as “Alzheimer’s disease.” He urged rejecting various forms of dementia and senility as common consequences of aging, and accepting them as a disease requiring all the attention any other important disease deserves. Now medicine and society had a problem—"The Problem of Dementia,” the famed physician Lewis Thomas called it in a 1981 essay published by the popular magazine Discover, and he noted that, suddenly, “a disease of the century” had arisen (p. 3).

Forty years on, Jason Karlawish thinks there is still a problem, but in keeping with Katzman’s call, he refers to “The Problem with Alzheimer’s.” Based on the history he covers and the experiences he shares in this book, nothing of much significance has occurred since “The Problem of Dementia” became the “The Problem of Alzheimer’s.”

Karlawish is a physician who cares for people with Alzheimer’s and a researcher delving into “issues at the intersections of care, ethics, and policy” (p. 5).  He draws on his experiences in this book, which he describes as “the story of how once upon a time, Alzheimer’s disease was a rare disease, and then it became common, and then it turned into a crisis.” Karlawish wants to answer why during the time between Thomas’ essay and the year 2010, “nothing really changed,” and how that could be the case in “the richest and most powerful nation.” (p. 6) He tells this story in four parts.

The first part concentrates on efforts clinicians and researchers were making following Thomas’ call to distinguish Alzheimer’s disease from normal aging, other dementia types (e.g., frontotemporal, Lewy body), and precursor syndromes (e.g., minimal cognitive impairment). They were looking for definitive clinical patterns, imaging studies, diagnostic tests, and pathologic markers for the disease. 

In the second part, Karlawish goes back in time to when Alois Alzheimer first found what are known today as “plaques” in the brain of a patient who had an early onset of severe, progressive dementia. He traces the attention this finding drew to eventual advances in imaging and biochemistry aimed at diagnosis. Karlawish also covers how a cascade of events over the decades following Alois Alzheimer’s finding disrupted the pursuit of a pathophysiological basis for dementia. These events included the rise and dominance of Freudian psychology; followed by two world wars; the cold war; the overshadowing of AIDS; Medicare political and funding constraints; tussles among patient advocacy groups; loss of asylums where care and research had coexisted; clinical failure of the first drug; and the continued debate over whether dementia is a consequence of aging or is a disease. 

Karlawish moves on in the third and fourth parts to cover what “we will have to learn to live with the disease so as to improve the lives of persons...to provide the care they need to live well at home...and repair the broken system” (p. 171). Success in his view requires integrated biological, psychological, and social components. He reports the progress on each of these three fronts: some failed approaches continue to fail (such as drugs targeting amyloid); some psychological interventions show promise (though at times causing moral tension); some of the social configurations engineered for Alzheimer’s patients, families, caregivers, and society have produced triumphs and some disasters. He has much to say about why and how this search must go on, but with some much-needed course corrections. 

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How To Be Depressed

Scialabba, George

Last Updated: Nov-28-2021
Annotated by:
Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Collection (Essays)

Summary:

How To Be Depressed  is a book with a most unusual structure.  It is introduced by an essay entitled “Intake” that was previously published in a literary magazine.  The bulk of the book, “Documentia,” is taken up by an edited selection of the author’s psychiatric records from 1969 to 2016. It is rounded out by an interview with the author and by his “Tips for the Depressed.”   

Author George Scialabba ascribes his “exceptionally flimsy…shock absorbers” to his “constantly worried” parents (p.3).  While studying at Harvard he becomes involved with a strict religious organization. After leaving that group he undergoes a crisis of faith and his first episode of depression. Paralyzed by self-doubt, he drops out of graduate school and begins a cycle of clerical jobs that are beneath his intellectual capability. After many years he gradually wins distinction as a freelance essayist.  However, due to his incapacitating symptoms he never has a steady writing job and has difficulty attaining financial security.  

In his introduction, Scialabba tells us that “the pain of a severe clinical depression is the worst thing in the world.  To escape it, I would do anything” (p.1).  As attested to by the notes of his well-meaning psychiatrists and psychotherapists, he has diligently applied himself to a wide variety of treatments.  Sadly, if anything he gets worse over time, and eventually requires electroconvulsive therapy. 

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