Showing 1 - 10 of 321 annotations tagged with the keyword "Chronic Illness/Chronic Disease"

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).


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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).

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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).  

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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.

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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.

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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. 

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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.

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Together

Murthy, Vivek

Last Updated: Nov-09-2020
Annotated by:
Thomas, Shawn

Primary Category: Literature / Nonfiction

Genre: Longform journalism

Summary:

Since the first surgeon general was sworn into office in the 19th century, the Office of the Surgeon General has positioned itself as the leading voice on public health matters in the United States. In recent history, the office has had its highest profile campaigns rallying against issues such as tobacco use, obesity, and HIV/AIDS. Considering the combination of prevalence, morbidity, and mortality associated with these health issues, there is no doubt that any effort to stem the tide was a worthwhile endeavor.

When Dr. Vivek Murthy became the surgeon general in 2014, his office continued the historical campaigns against these health issues. At the same time, Dr. Murthy began investigating a looming epidemic within our borders: loneliness and social isolation.

It may be hard to convince the average person that loneliness is a problem of similar scale as tobacco use, obesity, or AIDS. There is no question that loneliness is unpleasant, even if it only lasts for a few moments. But the notion that one’s state of mind can predispose to disease or premature death somehow feels like a stretch. Addressing this skepticism, Dr. Murthy writes in his book about Dr. Julianne Holt-Lunstad, a psychologist at Brigham Young University who also faced a great deal of cynicism surrounding her research into the effect of social relationships on “everything from our behavior to our cellular function.” She had a breakthrough in 2010 when she published a massive study analyzing the health outcomes of over 300,000 participants, categorized by their degree of social connectedness. She found that social isolation was significantly linked to premature death, representing a risk nearly as serious as pack-per-day smoking, and more serious than obesity, alcohol use, and lack of exercise. Dr. Holt-Lunstad’s research spurred further studies which linked loneliness to heart disease, stroke, and depression, amongst other diseases.

These findings are hard to ignore, especially in light of the ongoing opioid addiction crisis and rises in teenage depression and suicide, all of which have been linked to loneliness and social isolation. In Together, Dr. Murthy weaves together scientific research, personal anecdotes, and current events to create a manifesto for tackling the next great public health crisis.

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Annotated by:
Grogan, Katie

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

In her memoir Ask Me About My Uterus, science writer Abby Norman tells two intertwined stories: one about her fraught relationship with her own chronically ill body, and another about the fraught relationship between women and medicine. Norman is a sophomore at her dream college when a sudden, unrelenting abdominal pain sends her to the emergency room—and into a revolving door of medical appointments for years to come. Thus begins her diagnostic odyssey, protracted by an infuriating obstacle: not only must she endure excruciating pain, she must convince doctors that it’s real.

Norman is eventually diagnosed with endometriosis but has several frustrating clinical encounters along the way. Her symptoms are repeatedly minimized or disbelieved by doctors of various identities and specialties. One actually says the words that have long been inferred to Norman and so many women before her: “This is all in your head.” Finally receiving an accurate diagnosis provides some measure of clarity about Norman’s pain but little in the way of relief. She learns firsthand that medical knowledge about endometriosis is desperately lacking—a troubling realization given its prevalence. A commonly cited statistic suggests one in ten women have endometriosis but, as Norman notes, most studies have excluded marginalized communities, so the incidence is likely higher. Norman ultimately becomes an expert on the condition, setting her on a path to advocate for herself and others with endometriosis—and to write about it.  

The memoir is organized chronologically, beginning with the onset of Norman’s symptoms about seven years prior to the book’s publication, with occasional flashbacks that draw connections between her current crisis and her difficult childhood. She opens several chapters with descriptions of famous case studies and experiments, situating her own experience within a long and disturbing lineage of women dismissed, misdiagnosed, and mistreated by medical professionals.  

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Hidden Valley Road

Kolker, Robert

Last Updated: Jun-15-2020
Annotated by:
Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Biography

Summary:

The Galvins of Hidden Valley Road, just outside Colorado Springs, appear to be the kind of wholesome, all-American family that others might envy.  The tragic fact is that six of the twelve children go on to develop schizophrenia, a situation that is practically unprecedented.  In Hidden Valley Road, journalist Robert Kolker gives us the tale of the deterioration of six afflicted children and the traumatization of six healthy ones in an improbable, bucolic setting.  As one after the other reaches young adulthood in this “funhouse-mirror reflection of the American dream” (p. xxi) and inexorably succumbs to madness, the family struggles to cope.   

In their search for answers, the Galvins’s extraordinary circumstances come to the attention of researchers.  Ultimately, although there is no cure, the family makes a contribution through their genes to our understanding of schizophrenia, as a mutation is discovered that is shared by the afflicted children.   

Hidden Valley Road follows the travails of this “multiplex schizophrenia” family over so many years that there is a sea change in our understanding of the disease’s origins.  At first, it is taken for granted to be the result of a faulty upbringing at the hands of “schizophrenogenic” parents.  Later, biological explanations prevail.  Finally, a more balanced view is attained, with nature and nurture each thought to play a role.  

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