Showing 1 - 10 of 324 annotations tagged with the keyword "Chronic Illness/Chronic Disease"

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.

View full annotation

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. 

View full annotation

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. 

View full annotation

Queen of the Sugarhouse

Studer, Constance

Last Updated: Sep-14-2021
Annotated by:
Davis, Cortney

Primary Category: Literature / Fiction

Genre: Collection (Short Stories)

Summary:

Constance Studer's engaging "Queen of the Sugarhouse" contains nine short stories ranging in length from 9 to 21 pages, each story complete in itself.  Her nursing expertise is evident in several stories, including "Mercy" (page 3), "Shift" (page 77), "The Isolation Room" (page 95), "Testament" (page 112), "Special Needs" (page 122), and the title story, "Queen of the Sugarhouse" (page 138). 

While many of the stories specifically revolve around medicine or nursing, others examine a variety of issues, often with healthcare peripherally involved. 

In "Shelter" (page 21), a homeless vet who served in the Gulf War struggles with PTSD, the difficulty of obtaining permanent disability, the inability to find work or a suitable living space, and his quest to find treatment for his many physical problems after chemical exposure during Desert Storm.  He sees a different doctor at each appointment and no one truly helps him. "Finding today's meal or bed or beer takes all my energy, leaving me nothing left over for thinking about next week.  I am a veteran and can no longer vote because I have no home" (page 27).  Studer takes us into this man's life and struggles with clarity and empathy.


"Think Beauty" (page 37) questions what makes a woman beautiful (or believe she is beautiful) against a back story examining friendship and all that entails.  "This Middle Kingdom" (page 58) tells a story that encompasses both the heroics of a ski team that saves skiers in distress and how difficult it can be to feel compassion for those who end up in trouble because they flaunt the rules or advice of the experts--a theme quite relevant for our times. 

The book's opening story, "Mercy" (page 3) explores a nurse's various reactions after she makes an error while dispensing medication. As in every story in the collection, multiple themes weave in and out, driven by a character's decision or dilemma.  In "Mercy," we see how medical personnel can truly care for and worry about their patients; how even a small error may cause a nurse deep distress, both for her patient and for her future; how the nursing shortage leads to burnout; and how "real life" continues on in the background, in this case, a passionate love affair that leads both to marriage and to grief.  "Grief is a train that doesn't run on anyone else's schedule" (page 15).

"Shift" (page 76) tells of a physician who is devoted to his work and his patients in the ER ("His white coat flaps, stethoscope bounces as the doctor runs, its weight a comfort, like a rosary for a priest" page 76) while his wife feels neglected.  The story moves between the chaos of the ER and the story of his marriage, a love that began when the doctor was in medical school.  After his wife leaves him, the doctor sleeps with the lights on, hoping she will return.  But whenever he closes his eyes, he only sees scenes from the ER.  The story ends with words the doctor has said so often to a patient: "Please sir, lie still.  I'm going to numb you now.  Hang on, man.  Soon the pain will be gone" (page 93). 

"The Isolation Room" (page 94) follows a woman, a writer, who has been, she believes, placed unnecessarily and mistakenly in a psychiatric ward.  As we read, we wonder if this woman is truly afflicted with a mental disorder or if she is simply extremely imaginative, perhaps betrayed by her husband who arranged for her admission. The main character is likeable, often seemingly sensible, perhaps incredibly but differently talented: "Maybe to be out of her mind meant she'd finally make the leap from logical to intuitive, into her true skin, a room all her own ... a writer, that teller of lies, pursuer of truth by means other than logical, that follower of breadcrumbs through the scary forest wherever they lead?" (page 97).


"Testament" (page 112) follows a student nurse in her first month of training and touches on the care of difficult patients, their various religious beliefs, and how healthcare providers' families are not immune to illness. "Special Needs" (page 121) follows Maria, a waitress with an unexpected pregnancy and wheelchair confined brother. The title story, "Queen of the Sugarhouse" (page 137) is a poignant examination of breast cancer; the terrible trial of chemo and radiation; the complex relationship between the suffering mother and her daughter, a nurse; and how life changes when the drama of uneasy but genuine love and relationship ends.  "I think I hear Mama's voice, then
realize it's only the sound of water over rocks.  Tears are this river carrying me forward" (page 153).


View full annotation

The Ministry of Bodies

O'Mahony, Seamus

Last Updated: Jul-26-2021
Annotated by:
Miksanek, Tony

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Starting eight months before his retirement, a gastroenterologist chronicles a myriad of encounters between himself and others - patients and their family members, colleagues, administrators, hospital staff, and even drug reps. He has worked for many years at a large Irish hospital dubbed the "ministry." His professional work there is divided between the endoscopy unit (where he performs colonoscopies and EGDs), medical wards, an outpatient clinic, and the ER.

Given his specialty, the roster of patients tilts heavily towards gastrointestinal problems: alcoholic cirrhosis, GI bleeding, chronic diarrhea, and abdominal pain. But additionally, his days are filled with patients presenting with a variety of medical problems including pneumonia, mental health issues, heart failure, serious fractures, dementia, seizures, anemia, and cancer. He attends to many frail elderly folks in the emergency department. His interactions with patients range from intense to jovial, from unexpected to heart-wrenching. For example, a woman with chronic abdominal pain asks the doctor if she might be suffering from PTSD. When asked why she thinks that might be possible, her reply is "My son hung himself. I found him" (p191).

The doctor is beleaguered by frequent, and at times wacky, emails generated by the hospital bureaucracy as well as unproductive meetings. He must cope with his own health problems too (a vitreous detachment, arthritic hands, and unexplained nosebleeds). He decries the "foolishness" of excessive medical testing and overtreatment and cites the case of a young woman with irritable bowel syndrome who already had over 1,200 test results logged in the hospital lab. He describes the ministry as "an oasis of kindness and comfort" but "also a place of chaos and conflict, of institutional cruelty" (p8).

View full annotation

Summary:

Native Ohioan Brian Alexander cares a lot about his state and its many economic problems, especially as they impact healthcare. For this book, he’s an on-the-ground reporter covering the events in and around a hospital in the small town of Bryan from 2018 to 2020. He is also an in-depth interpreter, analyzing the many dilemmas of this small hospital and emphasizing that these represent parallel problems of social justice for all of contemporary American healthcare.  An opening chapter reviews some of the difficult history of this area, including economic collapse, lack of public health, lack of health insurance, and collapse of jobs in supply chains for Detroit.           

While the timeline of the story is short, it has wide breadth in local and national issues. These are illustrated by the stories  of specific people. Marc Tingle, a local contractor has a heart attack; his wife falls ill and is diagnosed with cancer. Medical bills mount up. Marc has a second heart attack and a stent inserted. He, like many others receives “rescue” medicine, not preventive healthcare, due to social or economic issues beyond their control. Similarly, we read about Keith Swihart, overweight and diabetic. He has a foot ulcer that requires surgery and later partial amputation. He has eye problems that progress to near blindness. Valerie Moreno injures her back at work but does not report it to the company, considering herself tough, but she must have spine surgery. After being laid off, she has part-time jobs, money problems, and turns to OxyContin pills. These are dramatic and painful stories.  

Many families make “just enough money to disqualify themselves…from Medicaid, but not enough to afford coverage offered by an employer or via the Affordable Care Act” (p. 242).            

Such patients illustrate a deadly whirlpool of issues: lack of routine medical care, inadequate health insurance, no national health program, a collapsed economy with no good jobs or prospects of advancement, poor nutrition, pervasive poverty, racism, sexism, and more.           

Amidst all this, we follow Phil Ennen, the CEO of this hospital (CHWC--for Community Hospitals and Wellness Centers) in Bryan. He wants to rely on his local, traditional values of “we can fix this,” but now he must confront the threats of national hospital chains, the need to cut staff and services, and the seductive lures of adding for-profit and high-tech services. Eventually, he sees no path forward and accepts the board’s invitation to retire. His replacement will have all the same problems.           

A closing section sees the arrival of Covid-19, a threat to this hospital and, of course, the nation at large. Alexander writes, “the virus seeped into the fault lines created by American pathologies. The country had changed from being an ongoing project to improve democratic society and live humanistic ideals to being a framework for fostering corporate profit” (p. 268).  

View full annotation

Annotated by:
Clark, Mark

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The title of this memoir derives from the Native American custom of bending a tree’s growth in order to indicate a direction of safe passage.  The custom represents a reverent cooperation with nature through which a compassionate communication is accomplished: a message to other journeying souls as to how they might find a way to their flourishing.  The title is exquisitely apt for this memoir, which echoes the gesture of the arrow tree, testifying to a safe passage through the wilderness of COVID.  The author, a first-rate, published Victorian scholar, contracted COVID-19 in March 2020 upon her return from a sabbatical at the University of Cambridge, which was cut short as a result of the pandemic. 

Weliver has suffered from symptoms ever since: hers is the experience of living with long COVID.  The condition warrants her taking a leave from her university, and she returns to her childhood home of Interlochen, in northern Michigan.  Her living in and engaging with the natural world there encourages her to undertake meditations about that world and her place in it as she lives with her illness.  The writing—the foundational means of her healing—inclines her, crucially, to think with the stories of the Odawa (Ottawa) and the Ojibwe (Chippewa), Anishinaabek ("Original Man") of the region, which she researches as a means of deepening her understanding of her home, her origins, and the nature of her identity.  Her quest for understanding turns not only to these stories, but to an integration of them with the wisdom of other guides in her life: authors of the Romantic and Victorian periods, poets and thinkers of Taoism and other ancient Eastern philosophies, mentors in her rich journey of studying both literature and music (she attended Interlochen Center for the Arts, Oberlin, where she double-degreed in English Literature and Voice (Music), Cambridge, and the University of Sussex), and her own family, particularly her mother.  Her prose is accessible and welcoming, not at all the erudite sort one might anticipate from a reputable scholar: it invites curiosity and encourages insight that is, at times, breathtaking and joyous.  This “arrow tree” memoir points its readers in the direction of a safe passage to the home of our natural world, where, in finding union with that world, we may experience healing not only from COVID but from habits of the heart that have left us more broken than we know.

View full annotation

Parenthesis

Durand, Élodie

Last Updated: Apr-23-2021
Annotated by:
Miksanek, Tony

Primary Category: Literature / Nonfiction

Genre: Graphic Memoir

Summary:

Judith, a French woman in her early twenties, experiences "spells" - episodes of shaking, staring, and sudden memory loss. These spells occur daily and her behavior becomes erratic. She visits a neurologist. He diagnoses epileptic seizures and prescribes medication. Yet the convulsions continue so Judith's drug dose is upped and an MRI of the brain is done.

The MRI scan finds a small tumor that appears inoperable. A brain biopsy reveals an astrocytoma. Judith's life now revolves around her illness and the medical monitoring of it. Time feels distorted, and she likens her seizures to "a little death." Everyday life becomes blurred. She is advised to see a neuropsychiatrist. Her parents worry about her constantly.

Eventually Judith is referred for Gamma Knife radiosurgery. Eighteen months after the procedure is completed, only a tiny scar at the site of the tumor remains. Three years following the treatment, the seizures are gone. She rediscovers the joy of life and embraces a hopeful future.

View full annotation

Motherless Brooklyn

Lethem, Jonathan

Last Updated: Apr-12-2021
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Lionel Essrog is the narrator and main character of the novel, although when his Tourette syndrome kicks in, he might introduce himself as: “Liable Guesscog, Final Escrow, Ironic Pissclam, and so on” (p. 7). Tourette syndrome is a neurological condition causing involuntary, repetitive movements and vocal sounds (e.g., words, utterances, growls)—tics. 

Lionel lived at the Saint Vincent Orphanage in Brooklyn, New York until a local “penny-ante hood,” Frank Minna, recruited him and three other “white boys” to do his bidding as a “motley gang of high-school-dropout orphans.” (p. 291) Truck piracy was their first line of work, all the while oblivious about why they were moving boxes from one truck to another. Minna expanded his business into more lucrative and dangerous activities under the façade of a limousine service and private detective agency. He gets too close to the sun and is murdered. Lionel liked Minna, who became a father figure to him, accepted his Tourette quirkiness, and even conspired with him to throw their clients off balance when it served their purpose. Though Lionel admitted, “We were as much errand boys as detectives,” he recasts himself as a bona fide detective and makes finding the murderers his raison d’être. (p. 156) 

In typical murder-mystery fashion, Lionel must wend his way through complex relationships and find hidden clues to solve the case. In not-so-typical fashion, he contends with the Tourette syndrome accompanying him; Tourette is a major character in the book. Together, they find who murdered Frank Minna. 

View full annotation

Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

The author, Ezekiel J. Emanuel, says his book title “is a terrible question” (p. 1), because “it is not possible to select the best health care system overall.” However, he continues, “it is possible and reasonable to make judgments about better and worse systems” (p. 351), such as considering “which country has the best consumer choice,…the most innovative health care system,…or best addresses the needs of chronically ill patients” (p. 7). And, that’s what he does.

Emanuel and his research partners compare eleven, high-income countries: United States, Canada, United Kingdom, Netherlands, Norway, France, Switzerland, Canada, Australia, Taiwan, and China. They examine eight content areas: history; coverage; financing; payment; the delivery of care; prescription drug regulation; human resources; and future challenges. These content areas serve as the subject headings for the chapters covering each country. In the penultimate chapter, “Who’s the Best?,” Emanuel assesses and judges each content area across countries. (Spoiler alert: the United States does not fare well.) The concluding chapter is built around “six lessons for improving the US health care system” (p. 385), followed by a coda where Emanuel considers how his findings relate to the coronavirus pandemic.

View full annotation