Showing 1 - 10 of 965 annotations tagged with the keyword "Suffering"

The Beauty in Breaking

Harper, Michele

Last Updated: Sep-18-2020
Annotated by:
Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The Beauty in Breaking is the memoir of an African American physician who, in her own words, has “been broken many times” (p. xiii).  

Despite maintaining a veneer of affluence, the author, her mother and siblings live in constant fear of being battered by her father. Following one particularly vicious attack, she accompanies her injured brother to the local emergency room. That day she serendipitously discovers her calling: “As my brother and I left the ER, I marveled at the place, one of bright lights and dark hallways, a place so quiet and yet so throbbing with life. I marveled at how a little girl could be carried in cut and crying and then skip out laughing” (p. 18).  

Much later, the author (Michele Harper) undergoes a shattering breakup and divorce. She endures disappointments at work, some of which, regrettably, can only be explained by the color of her skin.    

As she picks herself up time and time again, Harper discovers her inner resilience: “The previously broken object is considered more beautiful for its imperfections” (p. xiii). She learns from the experience of her own suffering to develop compassion in her clinical work. The bulk of the Beauty in Breaking is devoted to case studies of the author’s clinical encounters with patients in the emergency room.

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Annotated by:
DiLeonardo, Olivia

Primary Category: Literature / Nonfiction — Secondary Category: Literature /

Genre: Graphic Memoir

Summary:

Dr. Weaver-Hightower wrote, illustrated, and published this powerful graphic work in the Journal of Medical Humanities.  The comic itself is presented in a traditional paneled format, with a few exceptions, and rendered in a moody ink wash in black, white, and various shades of darker and lighter greys. The story is told in the authentic, sometimes faltering voice, of the father of Thomas and Ella, a pair of twin infants who died at 22 and 24 weeks into pregnancy. Beginning with their harrowing trip to the hospital, the comic describes the father and mother’s loss of Ella, shortly after she was born prematurely; their subsequent wait for Thomas to reach the “viable” age of 24 weeks; his stillbirth; and the couple’s sudden discharge from the hospital, going home with “empty arms”.  The story then transitions into “The Long After”, including the funeral and the phases of the parents’ grieving process.  The father describes his grief, frustrations, the couple’s differing ways of coping, and his ambivalence and anger toward religion as a source of comfort or deeper understanding.  On the last page, he recounts their hopes and fears as they enter into their second pregnancy, concluding with panels of the father wrestling with how to understand and process this loss.  The final panel is an image of the father in profile, expressionless, saying nothing, a fitting conclusion to a story for which words seem to fail. 

With this piece, the author introduces us to the genre of the “research comic”. The comic is followed by a methodological appendix, which explains the author’s process for choosing, capturing, and relating this history in words and illustrations, as well as his rationale for selecting a comic or graphic memoir format for the piece.  The author also elaborates upon the concept of the comic as a form of “rigorous, informative research” (226).  The appendix is very interesting and will satisfy the curiosity of readers asking the questions, “How did he do this?”, or “Why is this story a comic?”, but the piece stands on its own without the appendix, as well.  

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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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Pain Studies

Olstein, Lisa

Last Updated: Jun-10-2020

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

“All pain is simple” reads the opening sentence of this unusual and striking book. The next sentence reads, “And all pain is complex.” These two sentences foreshadow many puzzles to come: how do we live between chaos and control? Why can’t doctors figure migraines out? Why don’t they agree on a treatment for a particular patient? Olstein is a poet and long-term migraine sufferer. Her book offers many observations about pain, and her attempts to define it, describe it, and plumb its nature through language. There is no linear narrative or argument, rather 38 very brief chapters—usually three to five pages—and many of these could be read in a different order. 

Olstein uses the terms “studies” and “research” for her efforts to capture pain, to explain it, and to understand the cause(s) of her disease. Her mother had migraines; women have three times the rate of men; she had a childhood head injury. Do any of these factors explain her disease? No. And what treatments work? She lists some 50 drugs/supplements/activities she has tried to deal with her illness. None of these have worked in a definitive way. Further, she lists some 30 side-effects she has experienced from these various treatments (pp. 74-75). She has had multiple migraines, one lasting three months, but she also says drugs keep pain at bay: “mostly the medication does work” (p 90).

Some disparate figures help her focus her inquiry: Joan of Arc (possibly a migraine sufferer), the TV character Dr. Gregory House (racked with chronic pain, he is an opioid addict), Virginia Woolf, and Hildegard of Bingen (possibly a migraine sufferer). Also ancient writers such as Lucretius, Pliny the Elder, and Antiphon the Sophist, and contemporaries from different fields, such as mathematics and neurology. Also she refers to poems by Emily Dickinson, Elizabeth Bishop, and C. D. Wright, as well as to an article on gendered literature by Siri Hustvedt. 

Largely written during a writing residency, these are incisive notes plus associations as she plumbs not only her illness but also her responses—as poet, as thinker, as searcher for healing—to the bizarre, long, difficult path of her migraines. (We have only brief mentions of her personal and family life.) While she refers to some scientific literature, it is more often that her insights come from artistic fields such a literature, sculpture, drama, and popular music. She writes that her work with a therapist over a dozen years has been helpful to her.

There is no conclusion…nor can there be. Her illness, treatment, and writing are all works in progress. Patients are different; doctors are different; science evolves. In their many forms and presentations, migraines are mysterious and complex, as this book creatively and powerfully shows. Olstein writes, “The beauty, the love, is in what we perceive” (p. 144). We may take this observation as the guiding principle for the book.   

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5B

Haggis, Paul; Krauss, Dan

Last Updated: Apr-17-2020
Annotated by:
Teagarden, J. Russell

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

5B is a documentary about the special unit created at San Francisco General Hospital (Ward 5B) in 1983 to take care of people with AIDS. Three years later, it moved to the larger Ward 5A, where it remained in operation until 2003 after the introduction of treatments effective enough to drastically reduce the demand for hospitalization and standards of care for AIDS patients were in place throughout the hospital. The documentary covers the medical, social, and political considerations surrounding the opening of Ward 5B, and the AIDS epidemic during that time.

The story is told from various perspectives through interviews with key figures in its development and operation, and archival footage of the ward and AIDS activism in the community. The most prominent among the key figures is Cliff Morrison, a clinical nurse specialist who spearheaded the idea for the unit and then managed it. Several other nurses who served in staff and supervisory positions are featured. Participating physicians include Paul Volberding, an oncologist at the time who became pivotal in the development of effective HIV treatments, and  Julie Gerberding, a physician treating patients on the unit who later became the Director of the Centers for Disease Control (CDC). Lorraine Day, the chief of orthopedic surgery at the hospital when the unit opened is heard often as an opposing voice. Hank Plante, a local television news reporter also appears frequently to offer his perspectives on many of the social and political issues swirling around the unit. Among other participants are AIDS activists, volunteers, and family members of patients on the unit.

Several storylines frame the documentary including how nurses drove the unit’s inception and then were instrumental in running it. “Nurses were in charge,” said Volberding, admiringly. Interwoven throughout the film are the experiences of the patients and individual nurses, including one nurse who was infected with HIV from a needle stick. “Those nurses were the real heroes,” said one activist.  

The unit and those who worked there also encountered opposition from inside the hospital. The nurses of this unit practiced in ways they considered safe but not in such a manner that would preclude them from touching patients or require that they don so much protective gear they become unseeable. Nurses and other clinicians from other parts of the hospital objected and did not want to be compelled to adopt practices they thought endangered them on the occasions they took care of AIDS patients. The film follows this story through union grievances and public debates to their conclusion, which sided with the unit nurses and their advocates.

The story is told against a backdrop of gay rights activism in the 1970s that led to AIDS activism with its influence on how the unit operated. Also getting attention is the fear AIDS struck in society and the resulting social backlash at a time of federal government insouciance. This fear continued up to the time the federal government recognized the epidemic and began taking action, relieving some of the tension but never eliminating it. The documentary ends with key participants reflecting on their experiences with the unit; most were proud, some bitter, and a few a little of both.

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Annotated by:
Galbo, Sebastian

Primary Category: Literature / Nonfiction — Secondary Category: Literature / Nonfiction

Genre: Criticism

Summary:

In Death is But a Dream, Christopher Kerr, MD, PhD, the Chief Executive Officer and Chief Medical Officer of Hospice & Palliative Care Buffalo, shares his patients’ end-of-life dreams and visions. The content and intensity of these dreams vary, but often center on patients’ transient meetings with predeceased loved ones, offering a deeply spiritual sense of peace during periods of physical suffering. 

Using patient interviews, Kerr’s book does not fetishize dream events as ghostly commotions or in terms of pseudo-mysticism, or insist on using a religious framework for their interpretation, explaining rather that bearing witness to and legitimizing end-of-life dream experiences constitute a new ethical imperative in the practice of palliative care: “A true holistic approach to patient care must also honor and facilitate patients’ subjective experiences and allow them to transform the dying process from a story of mere physical decline to one of spiritual ascension” (Kerr 28). Case after case, his research documents that because end-of-life dreams provide patients with a singular emotional and psychological comfort that no palliative medication can simulate, hospice professionals need to validate patient dreams by listening carefully and compassionately. 

With this in mind, end-of-life dreams serve as a kind of counter-narrative to dominant cultural understandings and representations of human experiences in hospice, specifically stereotypes of terminally ill individuals as being incapable of meaningful communication, creativity, and understanding. Kerr’s patients’ narratives reveal that end-of-life dreams and visions are not trauma-inducing experiences or instances of religious prophecy, but “help reframe dying in a way that is not about last words and lost love but about strengthened selves and unbreakable bonds across lives” (142). 

Death is But a Dream 
upends medical research, or certain “limitations of science,” that oversimplifies end-of-life dreams by attributing them to neurological deterioration, oxygen deprivation, and the side effects of pain management medication (11). The general lack of rigorous, serious-minded research in end-of-life dream experiences is inseparable, in part, from institutionalized medicine’s “inability to see dying as anything but a failure” which has produced a healthcare system that “reflects a limited view of the totality of the dying experience” (7). The patient accounts that Kerr documents, however, reveal an undeniable dimension of human experience at life’s end whose complexities may be well beyond the reaches of full scientific understanding. End-of-life dreams seem to be part of an elaborate system of compensation (to borrow a term used by Siddhartha Mukherjee), as the mind works overtime to activate and animate certain memories to diminish the physical realities of dying. “There is an adaptation—substantive, spiritual yet cognitively meaningful,” writes Kerr, “a mechanism through which the patient can emerge from the dying process with a positive psychological change” (69). Indeed, the mystery of end-of-life dreams—their visions of loved ones; of seeking forgiveness, healing, and understanding within weeks, sometimes days, of one’s death; of comforting apparitions and visitations—points to a miraculous capacity within the human heart that eases the life-to-death transition.

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Man's 4th Best Hospital

Shem, Samuel

Last Updated: Feb-28-2020
Annotated by:
Miksanek, Tony

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Most of the group are reunited in this sequel to the 1978 blockbuster, The House of God: narrator Dr. Roy Basch and his girlfriend (now wife) Berry, former fellow interns (Eat My Dust Eddie, Hyper Hooper, the Runt, Chuck), surgeon Gath, the two articulate police officers (Gilheeny and Quick), and the Fat Man (a brilliant, larger-than-life former teaching resident). As interns, Basch and his comrades were a crazy, exhausted, cynical crew just trying to survive their brutal internship. Years later, the midlife doctors have changed but remain emotionally scarred.

The Fat Man (“Fats”), now a wealthy California internist who is beginning a biotech company targeting memory restoration, is recruited to reestablish the fortunes – financial and prestige – of Man’s Best Hospital which has slipped to 4th place in the annual hospital rankings. He calls on his former protégés to assist him in an honorable mission, “To put the human back in health care” (p34). Fats enlists other physicians (Drs. Naidoo and Humbo) along with a promising medical student (Mo Ahern) to staff his new Future of Medicine Clinic (FMC), an oasis of empathic medical care that strives to be with the patient.

Every great story needs a villain. Here the main bad guys are hospital president Jared Krashinsky, evil senior resident Jack Rowk Junior, and CEO of the BUDDIES hospital conglomerate Pat Flambeau. The electronic medical records system dubbed HEAL is a major antagonist, and the FMC docs wage war against it and the “screens.”

Poor Roy Basch works long hours, deals with family problems, has trouble paying bills, and experiences health issues (a bout of atrial fibrillation, a grand mal seizure, and alcohol use). Fats has warned of a “tipping point when medical care could go one way or another, either toward humane care or toward money and screens” (p8). Alas, the computers and cash appear victorious. A major character is killed. Many of the doctors working in the FMC including Basch leave the clinic. And fittingly, Man’s Best Hospital plummets in the latest rankings from 4th to 19th place.

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Summary:

A dramatic prologue depicts Joan Kleinman screaming and hitting her husband Arthur in bed. She is ill with Alzheimer’s disease and does not, for that moment, recognize him. The following chapters provide a long flashback, beginning with Arthur’s family background, his youth as a tough street kid in Brooklyn, his medical education, and his marriage to Joan. We learn of their work in China, travels, and professional success. Arthur gradually realizes that the US health care system has become “a rapidly fragmenting and increasingly chaotic and dysfunctional non-system” (p. 126). Further, he sees a reductive focus on patients as mere biological entities, ignoring their personal, familial, and cultural natures. As a result, “Caregiving in medicine has gone from bad to worse.”

Joan suffers from an atypical kind of Alzheimer’s that increased over “that dismal ten years” (p. 156) with Arthur providing care to her, at cost to himself. There is no home health aide, no team approach with doctors, indeed no wider interest in her care other than the state of her diseased brain. Kleinman vividly describes the toll on her and on him.

Kleinman is aware of the privilege he has as a Harvard doctor, well known for his psychiatric work, his teaching and writing, and his wealth—in contrast to other patients and families. Some patients go bankrupt from medical bills.

Visits to nursing homes reveal a wide range of social conditions, contexts, and levels of care; the best have a sense of “moral care” (p. 200). Joan’s final days are hard. Supportive family members agree to her living will and healthcare proxy for morphine pain control only. She dies, apparently “at peace” (p. 232).

In the last pages Kleinman introduces the notion of “soul” as “essential human interactions” (p. 238). He discusses some of the limits of medicine (see paradoxes below) but also praises local efforts to improve humane care, such as team approaches, uses of narrative medicine, and medical/health humanities programs.  

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The Edge of Every Day

Sardy, Marin

Last Updated: Jan-25-2020
Annotated by:
Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The Edge of Every Day is the memoir of a woman who comes from a “multiplex” family, in which schizophrenia is manifested in successive generations.  

The book consists of a series of essays.  Some, on topics ranging from gymnastics to building altars, were first published independently and do not appear (at least at first glance) to be linked. The choppy effect this produces speaks to the disorganized thinking that psychotic persons experience.  Other essays propel the tragic narrative of family members slipping into psychosis. At the age of ten, the author Marin Sardy, watches as the “shapeless thief” of schizophrenia steals her mother’s personality away.  Later, as she reaches her thirties, she witnesses her younger brother succumb to an even more pernicious illness.   

Despite Sardy’s mother’s conspicuous symptoms, (she advises her daughter to move to Pluto and informs her that her father has been swept away in a tsunami and replaced by another man), she functions just well enough to avoid being compelled to accept treatment. Thus, no one can stop her from going through a large inheritance and becoming destitute.  

Sardy’s brother Tom suffers his first psychotic break in his 20’s and then rapidly deteriorates.  He repeatedly “cheeks” his meds and falls through the cracks of Anchorage’s mental health system. The author and her family scour the streets, hoping to lure him inside for a shower or hot meal. As the weather worsens, they can only hope he will land in prison if it means not being exposed to the Alaskan elements.  Ultimately, the young man, who once sailed through college with A’s, commits suicide in the bathroom of a psychiatric facility. 

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Annotated by:
Davis, Cortney

Primary Category: Literature / Nonfiction

Genre: Journal

Summary:

Nicolas Diat is a French journalist who, over the course of many months, traveled throughout France visiting a number of monasteries.  Because monks live their lives in many ways preparing for death, for eternity, Diat wondered if they had special insights about our final days on earth. "A Time To Die" contains a foreword by Robert Cardinal Sarah; comments by the author ("Extraordinary Stories); eight chapters, each the story of a particular monastery and particular monks; an epilogue; and closing remarks by the author.

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