Showing 1 - 10 of 442 annotations tagged with the keyword "Pain"

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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Annotated by:
Donley, Carol

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

 Cortney Davis has divided this collection of her poetry into seven major sections which she calls “Voices.” The first and last sections are “Voices of Healing” which frame and wrap around the others: “Home,” “Desire,” “Suffering,” “Faith,” and “Letting Go and Holding On.” The sections include previously published poems as well as new ones.  Davis is known for her ability to see and understand what is going on and to express that in ways that help the reader “get it.”  This collection also shows her ability to hear the unique voices that express suffering, faith, desire—and to convey empathic understanding of the speaker.  Sometimes she gets angry with the speaker. The poems range through time, from her childhood, nursing training, nursing experiences, deaths of her parents, to more current experiences with grandchildren.  Throughout there is a consistent caring and compassion, mixed with many other feelings, many of them contradictory.

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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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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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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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The Little King

Rushdie, Salman

Last Updated: Dec-19-2019
Annotated by:
Galbo, Sebastian

Primary Category: Literature / Fiction

Genre: Short Story

Summary:

Dr. R. K. Smile, MD, founder of Smile Pharmaceuticals, Inc. (SPI), enjoys a sudden lurch into fortune and celebrity. Dubbed the ‘Little King’ by his Atlanta-based Indian community, Dr. Smile is a towering medical authority, philanderer and philanthropist, known to be both generous and avaricious. His pinnacle pharmaceutical coup, the patent that has earned him billionaire status, is InSmile™, a sublingual fentanyl spray designed for terminally ill cancer patients. Dr. Smile’s entrepreneurial vim, however, hardly stems from benevolent medical research, but rather an ‘excellent business model’ that he observed on a visit to India during which a Bombay ‘urchin’ handed him a business card that read, ‘Are you alcoholic? We can help. Call this number for liquor home delivery.’ The blunt practicality of building a market around sating addiction strikes the doctor as entirely sensible. Often wistful about India’s ‘old days,’ Dr. Smile fondly recounts the insouciance of neighborhood dispensary hawkers, their willingness to ‘hand out drugs without a doctor’s chit.’ Though admitting that ‘it was bad for [their] customers’ health but good for the health of the business,’ Dr. Smile yearns to replicate a similar culture of delinquent pharmacology, an unregulated market capable of profiting from supply-and-demand forces but indifferent to the wellbeing of its patrons. 

In the meantime, Dr. Smile’s wife, Mrs. Happy Smile, a simpering and daft socialite, envisions grand branding prospects that will globalize the Smile name through ostentatious publicity—inscribed name placards at the ‘Opera, art gallery, university, hospital […] your name will be so, so big.’ She refers to the worldwide reputation of the OxyContin family, the proliferation of the family’s name and esteemed place among prestigious cultural institutions: ‘So, so many wings they have,’ she says, ‘Metropolitan Museum wing named after them, Louvre wing also, London Royal Academy wing also. A bird with so, so many wings can fly so, so high.’ 

InSmile™ sales drive Dr. Smile’s burgeoning drug trade, as his prescription becomes preferred to conventional OxyContin highs due to its ‘instant gratification’ in the form of an oral spray. While SPI fulfills special house-calls for American celebrities and customers in ‘gated communities from Minneapolis to Beverly Hills,’ it also ships millions of opioid products to places such as Kermit and Mount Gay, West Virginia—communities, outside fictional contexts, that bear real-world vestiges of the opioid epidemic (West Virginia has the highest rate of drug overdose in the United States). Through a lecture series scheme, Dr. Smile bribes respected doctors to publicize and prescribe the medication, further entrenching the dangerous drug in medical circles.

As the SPI empire collapses following a SWAT-led arrest of his wife, Dr. Smile muses indignantly on his reputation and the ingratitude of his clients. Tugged again by nostalgia for the old country, he justifies his drug trafficking by likening it to quotidian misdemeanors, instances when one could circumvent the inconveniences of India’s law by knowing how to pull the venal strings of corrupt systems—like cutting a long ticket queue at the rail station, he says, by paying a little extra at a backyard office; or bribing government officers to stamp customs papers required to ship restricted antiques abroad—‘We know what is the oil that greases the wheels.’ With this deleterious mindset, combining nostalgia and entrepreneurial greed, Dr. Smile’s future is uncertain, but he is resolved to return—after all, he says, ‘I have lawyers.’

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Annotated by:
Shafer, Audrey

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Mallory Smith died of complications following a double-lung transplant for cystic fibrosis (CF). She was twenty-five years old and kept an extensive journal on her computer for 10 years. Salt in My Soul: An Unfinished Life is her memoir, edited by her mother, Diane Shader Smith, from the 2,500 pages of notes, observations and reflections which Mallory Smith wrote. The title refers to the intimate relationship of salt imbalance in cystic fibrosis, and the fact that Mallory felt her most well while swimming in the sea. Diagnosed at age three, she spent much of her days and nights treating the disease with medication, nutrition, chest percussive treatments, breathing treatments, adequate sleep, and aggressive treatment of infections. Unfortunately, while still a child her lungs were colonized with B. cepacia, a resistant bacteria ‘superbug’ which makes transplantation highly risky and hence leads to most centers to not accept CF patients onto their wait lists. Ultimately, University of Pittsburgh does accept Mallory as a transplant candidate, although her health insurance puts up every road block possible to her receiving care. 

Mallory Smith was extraordinarily accomplished – she graduated from Stanford University Phi Beta Kappa, and became an editor and freelance writer. She was also deeply engaged with life and others; she was grateful for her loving, devoted family, and she developed close, fierce friendships within the CF community, among classmates, and eventually, she fell in love. 

She resists being called ‘an inspiration.’ She writes: “I’m not an inspiration. I’m just a person, grounded in compassion, striving to achieve empathy and wanting to make my way with goodness and grace.” (p. 171) She marvels at the miracle of life: “Our existence is the result of stars exploding, solar systems forming. Our Earth having an environment hospitable to life, and then, finally, millions of highly improvable events accumulating over millions of years to bring us, a capable and conscious bag of stardust, to the here and now.” (p 111) Her memoir is a story of living and dying from CF, but it is also an inside look at the brief life of young gifted writer.

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Annotated by:
Shafer, Audrey

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Sunita Puri, a palliative care attending physician, educates and illuminates the reader about how conversations about end of life goals can improve quality of life, not just quality of dying, in her memoir, That Good Night: Life and Medicine in the Eleventh Hour. Thirteen chapters are grouped in three parts: Between Two Dark Skies, The Unlearning and Infinity in a Seashell. The arc of the book follows Puri as she is raised by her anesthesiologist mother and engineer father – both immigrants from India – Puri’s decision to enter medical school, her choice of internal medicine residency followed by a palliative care fellowship in northern California and her return to practice in southern California where her parents and brother live. Besides learning about the process of becoming a palliative care physician, the reader also learns of Puri’s family’s deep ties to spirituality and faith, the importance of family and extended family, and her family’s cultural practices.

Puri writes extensively about patients and their families, as well as her mentors and colleagues. She plans and rehearses the difficult conversations she will have with patients in the same way a proceduralist plans and prepares for an intervention. She provides extensive quotes from conversations and analyzes where conversations go awry and how she decides whether to proceed down a planned path or improvise based on the language and body language of her patients and their family members. We visit patients in clinic, in hospital, and at home, and at all stages of Puri’s training and initial practice. Some of the most charged conversations are with colleagues, who, for example, ask for a palliative care consultation but want to limit that conversation to a single focus, such as pain management. We also learn of the differences between palliative care and hospice, and the particularly fraught associations many have with the latter term. She feels insulted when patients or families vent by calling her names such as “Grim Reaper” or “human killer” (p. 232), but understands that such words mean that more education is needed to help people understand what a palliative care physician can do. 

As a mediator of extremely difficult conversations, where emotions such as shame, guilt, fear, helplessness and anger can swirl with love and gratitude, Puri finds the grace to acknowledge that all such emotions are part of the feelings of loss and impending grief, and to beautifully render her reflections on these intimacies: “Yet although I am seeing a patient because I have agreed that they are approaching death, if I do my job well, what I actually encounter is the full force of their lives.” (p. 206) Having met many dying people she notes: “Dying hasn’t bestowed upon them the meaning of life or turned them into embodiments of enlightenment; dying is simply a continuation of living this messy, temporary life, humanly and imperfectly.” (pp 221-2)
 

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The Faraway Nearby

Solnit, Rebecca

Last Updated: Aug-09-2019
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Nonfiction

Genre: Collection (Short Stories)

Summary:

Solnit dares the reader to categorize her book. Autobiography, memoir, travelogue, story collection, history, meditations, and pathography could fit. Common to all the categories and subjects covered is storytelling. “It’s all in the telling… and to be without a story is to be lost in the vastness of the world,” Solnit says in book’s opening. Storytelling can bring what is geographically faraway emotionally nearby.  

Solnit’s first and last stories lay the foundation for the others in between. Both center on the hundred pounds of apricots she received from one of her brothers who was getting their mother’s house ready for sale when dementia made it impossible for her to live alone. Solnit saw “the apricots as an exhortation to tell of the time that began with their arrival, and so the stories concern the time from when they arrived onward” (p. 240). Solnit considers this time when her mother’s dementia is worsening, an “emergency,” but in this instance, she conceives emergency as “an accelerated phase of life, a point at which change is begotten, a little like a crisis” (p. 250). The book to her, she says, is “a history of an emergency and the stories that kept me company then” (p. 249). 

The topics covered during this emergency are many and varied, related and unrelated. Just some of them are: her mother’s dementia, her cancer, her friend’s cancer, leprosy, Che Guevara as physician and revolutionary, Iceland, the Arctic, Mary Shelley’s Frankenstein, Buddhism, and cannibalism. In general terms, illness, pain, empathy, fairytales, and reading and writing are considered. Some of these topics are intertwined and some stand alone. 
 

The book is organized into thirteen numbered “stories.” Each has a one-word title. The titles of the first five stories are the same as the last five in reverse order, i.e., the first and last stories are both called “Apricots.” They are arranged on the table of contents page to form the shape of a bell curve that has been rotated 90 degrees with the apex of the rotated curve comprising the stories, “Wound,” Knot,” and “Unwound.” Threads run through the stories, and perhaps Solnit is telling us the story threads running through the first six stories are wound into a knot and then unwound in stories running through the last six of them. This structure may be more grist for people interested in how literature can be structured than for people interested in the insights into illness experiences literary nonfiction can provide.  
 

Not among the list of stories is one that is printed as a single line running along the bottom of each page in the book. It’s a story is about stories running along side the other stories. In an interview printed in the 8 August 2013 issue of Harper’s Magazine, Solnit said she used this form in part to 
invite“readers to decide how to read a book that has two narratives running parallel to each other; the thread can be read before, during, or after.” 

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Summary:

Bodies of Truth gathers twenty-five essays about experiencing illnesses and disabilities from the perspectives of patients, healthcare professionals, and families. These personal stories join the growing company of narratives that reflect on the inner experience of illness or caring for the ill and on the social circumstances that influence those experiences. In addition to the diversity of perspectives, the editors have selected pieces about an exceptionally wide range of health conditions: multiple sclerosis, brain damage, deafness, drug addiction, Down syndrome, pain, cancer, infertility, depression, trauma, HIV, diabetes, food allergies, asthma. They also include essays on the death of a child and an attempted suicide.  

The essays resist easy categorization. In their Preface, the editors explain that they took “a more nuanced approach” to organizing the contributions loosely by themes so that they would “speak to each other as much as they speak to readers.” For example, Teresa Blankmeyer Burke’s spirited “Rendered Mute” calls out the OB-GYN who refused to remove his mask during delivery to allow this deaf mother-in-the-making to read his lips to exchange vital communications. Her essay is followed by Michael Bérubé’s “Jamie’s Place.” In it the father recounts the emotionally and logistically complicated path he and his son with Down syndrome navigate as they seek a place for him to live as independently as possible as an adult. This sequence invites readers to listen to two stories about disability from differing parental perspectives and circumstances. But perhaps readers can also to find commonalities in ways social attitudes toward disability fold themselves into the most intimate moments of the families’ lives.  

Several of the essays take readers into a professional caregiver’s medical and moral struggles. In “Confession” nurse Diane Kraynak writes sensitively about a newborn in intensive care who distressed her conscience. She was troubled by both the extensive medical interventions he was given “because we can” and their failure to save him. When Matthew S. Smith was an exhausted neurology resident, he ignored a stroke patient who inexplicably handed him a crumpled paper. Scribbled on it was a ragged, ungrammatical, and urgently expressive poem, which he read only years later, admonishing himself “to cherish the moments of practice” that could “change your life forever (“One Little Mind, Our Lie, Dr. Lie”). Madaline Harrison’s “Days of the Giants” recounts “the sometimes brutal initiation” of her early medical training decades ago. Narrating those struggles has led her to “compassion: for my patients, for myself as a young doctor, and for the students and residents coming behind me.” 

Overall, the essays range widely across medical encounters. After attending her husband’s death, Meredith Davies Hadaway (“Overtones”) became a Certified Music Practitioner who plays the harp to calm hospice patients. Dr. Taison Bell graciously thanks a pharmacist that he regards as a full partner in his treatment of patients (“A Tribute to the Pharmacist”). Tenley Lozano (“Submerged”), a Coast Guard veteran, was traumatized first by the various abuses of male supervisors, once nearly drowning, and then by her struggle to receive psychiatric care.  

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