Pain Studies

Olstein, Lisa

Last Updated: Jun-10-2020

Carter, III, Albert Howard

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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From Nothing

Krugovoy Silver, Anya

Last Updated: Jan-06-2020

Davis, Cortney

Primary Category: Literature / Poetry

Genre: Poetry

I Watched You Disappear

Krugovoy Silver, Anya

Last Updated: Nov-21-2019

Davis, Cortney

Primary Category: Literature / Poetry

Genre: Poetry

Elderhood: Redefining Aging, Transforming Medicine, Reimagining Life.

Aronson, Louise

Last Updated: Oct-07-2019

Carter, III, Albert Howard

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

Genre: Treatise

Summary:

Louise Aronson, a geriatrician, argues that we should create Elderhood as the third era of human aging, joining the earlier Childhood and Adulthood. This new concept will allow us to re-evaluate the richness of this later time, its challenges as body systems decline, and, of course, the choices of managing death. This important and valuable book is a polemic against modern medicine’s limits, its reductive focus, and structural violence against both patients and physicians. She argues for a wider vision of care that emphasizes well-being and health maintenance for not only elders but for every stage of life.

Aronson argues that contemporary society favors youth and values of action, speed, and ambition, while it ignores—even dislikes—aging, older people, and the elderly. She says ageism is more powerful than sexism or racism—as bad as those are. Medical schools ignore the elderly, focusing on younger patients, especially men, and medical students perceive geriatrics as boring, sad, and poorly paid. Primary care, in general, seems routine and dull. By contrast, medical treatments, especially high-tech, are exciting and lucrative. In medical schools a “hidden curriculum” focuses on pathophysiology, organ systems, and drugs, ignoring patients’ variability as well as their suffering and pathos. Further, business and industrial models make “healthcare” a commodity, and nowadays “doctors treat computers, not people” (p. 237). Aging has become “medicalized” as a disease. Medicine fights death as an enemy, often with futile treatment that may extend a dying process.

Instead, Aronson says we need to bring back the human element, putting care of people at the center, not science. She calls for a new paradigm with ten assumptions (p. 378). Number 2 reads: “Health matters more to both individuals and society than medicine.” Number 9 claims, “As an institution, medicine should prioritize the interests of the people over its own.”

Many practical changes would follow, from redesigned “child-proof” drug containers to buildings and public spaces that are more congenial to older people—and, in fact, to everyone else. We should change our attitudes about old age. For example, we might use the adjective “silver” for a medical facility that is friendly to and usable by older people. Changing our attitudes about aging can help all of us imagine more positive futures for each one of us and for all of our society.

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Salt in My Soul: An Unfinished Life

Smith, Mallory

Last Updated: Aug-16-2019

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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That Good Night: Life and Medicine in the Eleventh Hour

Puri, Sunita

Last Updated: Aug-13-2019

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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In Two Voices: A Patient and a Neurosurgeon Tell Their Story

Clarke , Linda; Cusimano, Michael

Last Updated: Aug-05-2019

Kohn, Martin

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

About 20 Years ago, Linda Clarke, writer, professional storyteller and bioethics consultant was a neurosurgery patient of a colleague, Michael Cusimano at St. Michael's hospital in Toronto Canada. What was a distant relationship turned into one that was much closer. 10 years ago, Linda and Michael had a dialogue about recounting the story of her surgery and their relationship together. Linda became the "architect" of their project-- and they became co-authors in 2019 of In Two Voices: A Patient and a Neurosurgeon Tell their Story. The result is a lyrical co-memoir-- at times riveting, at other times sobering of their shared experience. What is probed goes much deeper than the facts, exposing the actors involved, their lives outside of their callings, their upbringing, and, most importantly, their differing interpretations of an important event during the surgery that only came to full light during the writing process.

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The Ninety-Third Name of God

Krugovoy Silver, Anya

Last Updated: Jul-25-2019

Davis, Cortney

Primary Category: Literature / Poetry

Genre: Poetry

Headcase: LGBTQ Writers and Artists on Mental Health and Wellness

Schroeder, Stephanie; Theophano, Teresa

Last Updated: May-06-2019

Coulehan, Jack

Primary Category: Literature / Literature

Genre: Anthology (Mixed Genres)

Summary:

Headcase explores themes of mental health, mental illness, and the experience of mental health care services by members of the LGBTQ community. The editors state, “We initially conceptualized Headcase in 2014 as a curated collection of personal pieces including essays, poems, illustrations, and photographs by writers and artists both established and new.” (p. xxviii) They further decided to include a broad array of patient, provider, social, racial, and ethnic perspectives to “present a broader, more in depth, and balanced conversation.” (p. xxviii)

Schroeder and Theophano divide their anthology into five topical sections: (1) conversations about health and illness, (2) stories of survival, (3) encounters of a mad kind, (4) pushing boundaries, and (5) the poetics of mental health and wellness. Among pieces in the first section, Arlene Istar Lev’s “Queer Affirmative Therapy” (p. 12) introduces a concept that appears repeatedly throughout the book. Unlike traditional conversion therapy, which tries to “cure” gay persons, or even the more neutral DSM V approaches, queer affirmative therapy not only accepts LGBTQ identities, but considers them normal healthy variants. Fidelindo Lim’s and Donald Brown’s more personal essay, “Sa Kanyan Saring Mga Salita” (p. 38), explores the gay experience in Filipino culture. Among the sad stories in section two, Chana Williams tells the tale of her mother’s lobotomy as a treatment for depression and lesbian relationships. Lobotomy also appears in “Fix Me Please, I’m Gay” (section three, p. 169), where psychologist Guy Albert discusses the era of conversion therapy.

In addition to essays, the conversation in Headcase includes poems, artwork (see, for example, Gabrielle Jordan Stein’s “This Work Is About Digested Socks,” p. 156), a suite of black-and-white images), a series of glyphs, and even a graphic story about J.R. Sullivan Voss’ attempts to fit into society as a trans-man, “Sisyphus (Or: Rocks Fall and Everyone Dies.” (p. 88) In the final section, Guy Glass presents an excerpt of his play, “Doctor Anonymous,” about the 1972 American Psychiatric Association meeting in which a closeted gay psychiatrist wearing a mask asserted the normality of gay identity. (p. 260) To contemporary viewers, the most shocking revelation in the play is the fact that at that time homosexuality was considered a mental disorder and conversion therapy was a standard practice.

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The Collected Schizophrenias

Weijun Wang, Esme

Last Updated: Apr-08-2019

Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

Esmé Weijun Wang is a novelist who has been diagnosed with Schizoaffective Disorder. The Collected Schizophrenias is a book of personal essays that was the 2016 winner of the Graywolf Press Nonfiction Prize.

A precocious young person on a track to success, Wang experiences a manic episode at Yale that leads to her first hospitalization. After a second hospitalization, her college washes its hands of her. Hitting roadblocks time and time again requires her to rebuild her life over and over. This is not a conventional chronological autobiography but rather essays that provide different approaches to the author’s experience of mental illness. The plural “schizophrenias” of the title encompasses the whole schizophrenic spectrum of disorders. As Wang explains, her own diagnosis is “the fucked-up offspring of manic depression and schizophrenia” (p. 10).

In an essay entitled “High-Functioning” we learn how the author, having been a fashion editor, knows how to pass for normal: “My makeup routine is minimal and consistent. I can dress and daub when psychotic and when not psychotic. I do it with zeal when manic. If I’m depressed, I skip everything but the lipstick. If I skip the lipstick, that means I haven’t even made it to the bathroom mirror” (p.44).

Later, in “The Choice of Children,” volunteering at a camp for bipolar children makes Wang think about what it would be like to inflict her diagnosis on her own offspring. In “Reality, On-Screen” she attempts to convey the sensation of decompensating to psychosis. And in “Yale Will Not Save You” she considers the failure of universities to accommodate mentally ill students.

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