Showing 1 - 10 of 162 annotations tagged with the keyword "AIDS"

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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The Great Believers

Makkai, Rebecca

Last Updated: May-26-2019
Annotated by:
Trachtman, Howard

Primary Category: Literature / Fiction

Genre: Novel

Summary:

The subject of Rebecca Makkai's engaging book, The Great Believers is the AIDS epidemic. Her narrative unfolds in two eras separated by 40 years. It opens in the mid-1980s with the funeral of Nico, one of HIV’s first victims when the epidemic exploded in the gay community living in Chicago. In the second chapter, the time frame abruptly switches to 2015 and introduces Fiona Marcus, Nico’s sister. She was part of the gay scene in Chicago in the 1980s, grew attached to the men, and provided the care and comfort that many of the families were unable to offer when their sons were dying of AIDS.

In the earlier time period, Makkai's main protagonist is Yale Tishman, the director of development at an art gallery affiliated with a prominent unnamed university in the Chicago area. He is working with a small group of colleagues, including a young man uncertain of his gender identity, to acquire a batch of paintings from Nora Marcus Lerner. She is an elderly woman who happens to be Fiona and Nico’s aunt. and who was part of the avant-garde social circle surrounding the modern artists living in Paris in the wake of the First World War. As Nora reaches the end of her long life, she desperately wants to preserve the artistic memory of her lover who died as a young man. As Yale works to finalize the acquisition, his relationship with his lover, Charlie, falters and triggers a series of untimely deaths in Yale’s close circle of friends. Ultimately, Yale also succumbs to the HIV virus.

In 2015, Fiona has engaged a private investigator to locate her estranged daughter, Claire, who is living in Paris and has rebuffed numerous efforts in the past to reconnect with her mother. Ultimately, Fiona is able to move past the intensity of her caregiving role to gay men in the 1980s and to reconnect and reestablish a tentative relationship with her daughter. There is hope that with a renewed bond with her daughter she can restore a reason to live that will be as strong as the work she did to support and sustain her gay friends through the agonies of AIDS.

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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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Summary:

This is a gripping, informative, and well-researched book about human blood. An accomplished journalist, Rose George, covers a variety of topics, largely in the U.S., Britain, and Canada but also in Nepal, India, and South Africa. She describes many current issues, provides historical background, and speculates on future technologies, such as replacement of blood by other fluids. There are nine sections:

 “My Pint”  While the book’s title refers to the author's volume of blood, this chapter’s title refers to a single pint she is donating. We read about blood supply (donated and stored blood) in the U.S. and—by contrast—in India.

“The Most Singular and Valuable Reptile” refers to the leech. This arresting chapter describes both historical and  modern uses of leeches to gather blood from humans. She visits a company called Biopharm in Wales where leeches are raised and prepared for shipment to medical clinics and hospitals.  

 “Janet and Percy” is a historical chapter focusing on Dame Janet Maria Vaughan, a central figure in creating the Blood Transfusion Service in England during WWII and Percy Oliver, who guided its predecessor, the London Blood Transfusion Service.  

“Blood Borne.”  This chapter describes Khayelitsha, South Africa, “the ugly backside of Cape Town” (p. 100): a place of poverty, crime, rape, sexual predation, and HIV. While rich nations provide assessment and treatment for people with HIV, poor nations have many citizens infected with the virus and, over time, rising rates of infection. 

 “The Yellow Stuff” describes the plasma portion of blood; it can be frozen (as FFP) and used as a filler for bleeding or trauma patients. Unlike blood—which can only be given without payment—plasma can be collected from paid donors. It is a largely traded commodity, part of a multi-billion dollar industry worldwide. Plasma carries Factor VIII, a crucial protein for clotting blood; hemophiliacs lack this and are at risk for death by bleeding externally or internally. Some plasma has been tainted, for example by HIV.

“Rotting Pickles.”  In Western Nepal (and other places), menstruation is taboo. George writes, “We are in a minority among species, and among mammals, to bleed every month.” She reviews historical views of women’s periods, mostly negative. Worldwide, there are many taboos, but also some educational efforts for public health that are helpful in impoverished areas.  

 “Nasty Cloths.” This tells the unusual story of an Indian man named Muruga, “a poorly educated workshop helper” who became a leader in creating sanitary protection for menstruating women. Worldwide, the feminine hygiene industry is some $23 billion. George also reviews related history, including Toxic Shock Syndrome from tampons.  

 “Code Red.” Bleeding is often a fatal factor in trauma, even with the best efforts to transfuse blood into the patient, unit after unit. George observes open chest techniques at a resuscitation. She reviews breakthroughs in blood typing, component therapy, and “buddy transfusions.”  

“Blood like Guinness: The Future.” George starts with images from the past: vampires, human drinkers of blood, past and, even, present. She interviews a purveyor of the concept that “young blood” is healthier than older blood. Can there be, discovered or created, blood substitutes that also save lives? 

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Comfort Measures Only

Campo, Rafael

Last Updated: Nov-26-2018
Annotated by:
Davis, Cortney

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

Physician Rafael Campo's collection of new and selected poems is a lovely look back (selected poems are from 1994 to 2016) and an exciting look at thirty-one new poems that continue his trademark use of a variety of poetic forms (the title poem "Comfort Measures Only" is a Villanelle, pg 135) and the moving and personal examination of his interactions with patients.   This collection begins with Campo's excellent introductory essay, "Illness as Muse" (pgs 1-9).  

As the essay opens, an audience member tells Campo that his poems are "really depressing." Even Campo's spouse advises him to lighten things up, a counsel I hope the poet never heeds--for it is precisely Campo's unwavering examination of sorrow, regret, death, and despair that set his poems apart from poems that find "butterflies or snowflakes or flowers as more suitable." Campo responds: "Try as I might to take all of this concern to heart . . . I keep finding myself drawn to write about illness" (pg 1).


Campo recalls how singing and praying consoled his grandmother and seemed to lessen her physical ills: "No wonder I have come to believe in the power of the imagination if not to cure, then to heal" (pg 4).  On page five he notes "To write about illness, to heed this terrible muse, is to reject distancing and to embrace empathy, for which there is no reward or claim on greatness other than perhaps the perverse joy of recognizing oneself as being susceptible to the same foibles and neuroses as anyone."  Indeed it is this vulnerability--the ability to see physician and patient on the same plane, as equal players in a moment in time--that has become another hallmark of Campo's poetry.
Selected poems from previously published collections follow the essay: nine poems from "The Other Man Was Me" (1994); eight poems from "What the Body Told" (1997); nine poems from "Diva" (200); five poems from "Landscape with Human Figure" (2002); seven poems from "The Enemy" (2007); and twenty poems from "Alternative Medicine" (2013).  Of these collections, all but "Landscape with Human Figure" and "The Enemy" have been reviewed in the database.

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Annotated by:
Perkins, Sam

Primary Category: Literature / Nonfiction

Genre: Longform journalism

Summary:

Olivia Laing, a British novelist and writer on cultural and social issues, tackles the phenomenon of loneliness as a pervasive condition that is both a symptom and a cause of malaise, dysphoria and depression. The book is thoroughly referenced and has an extensive, useful bibliography. Laing begins by describing her own loneliness when she moved to New York City. Somewhat reclusive by nature, she spent hours in her apartment, connected to  the outside world through social media, email and Skype. This leads her to examine the nature of loneliness, its causes and impact on the individual. She then turns to the lives and works of artists who specifically dealt with their own loneliness -- as inspiration, subject matter and personal burden: Edward Hopper; Andy Warhol and his assailant Valerie Solanas; the artist and AIDS activist, David Wojnarowicz; outsider artist, Henry Darger; singers Klaus Nomi and Billie Holliday; tech entrepreneur, Josh Harris, and painter Jean-Michel Basquiat. Laing weaves in pertinent research (Klein, Harlow, Bowlby, Ainsworth, Weiss, Turkel) and expertly ties their findings to her subjects’ creative lives. Her section on Josh Harris’ radical social media experiments is a pertinent reminder of technology’s role in fostering loneliness. A recurrent theme is that social isolation “leads to a decline in social sophistication which itself leads to further episodes of rejection.” Among the results, she says, are that lonely people are more susceptible to sickness and more likely to die before their time.  


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Heartbeats

Dixon, Melvin

Last Updated: Mar-01-2018
Annotated by:
Galbo, Sebastian

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

Melvin Dixon’s poem, “Heartbeats,” portrays the steady atrophy of someone suffering a fatal disease. The anonymous narrator first appears as healthy and vigorous:

“Work out. Ten Laps.
Chin ups. Look good.
Steam room.
Dress warm.
Call home.
Fresh air.
Eat right.
Rest well.
Sweetheart. Safe sex.”

An undisclosed illness takes hold and the narrator copes with the impacts of a life-threatening disease:

“Test blood.
Count cells.
Reds thin. Whites low.”

S/he calls home, diets, tries to calmly recuperate, and focuses on maintaining peace of mind, “Breathe in. Breathe out.” The reality of death, or “It,” cannot be ignored, “Today? Tonight? / It waits. For me.” Dixon uses wordplay for “sweetheart” to bookend the poem.
In the third stanza, the narrator affectionately addresses his/her lover as “Sweetheart”; but, through battling the illness and experiencing its withering effects, Dixon cleaves the word in two in the final stanza, imploring the body to withstand the disease: “Sweet heart. / Don’t stop.”

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Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Victoria Sweet describes her training in medical school, residency, and work in various clinics and hospitals. From all of these she forms her own sense of what medical care should include: “Slow Medicine” that uses, ironically, the best aspects of today’s “Fast” medicine.   

Her dramatic “Introduction: Medicine Without a Soul” describes poor—even dangerous—care given to her elderly father at a hospital. An experienced physician, she calls Hospice and saves him from a “Death Express” the hospital has “quality-assured” (pp. 6, 8). 
 
The book continues with 16 chapters in chronological order. The first ten describe Sweet from a late ‘60s Stanford undergrad and “a sort of hippie” (p.14), next a learner of “facts” in preclinical studies at Harvard, plus the clinical rotations (including Psychiatry, Internal Medicine, Pediatrics, and electives), then an internship as a doctor and her work in various clinics and hospitals. Throughout she’s collecting skills, concepts, even philosophies (Jung, feminism, Chinese chi, value of stories). She also describes particular patients important to her learning. She dislikes “just good enough” medicine at the VA (p. 95), “unapologetic budgetarianism” (p 141), medicine that is reductive and uncaring, and futile care for dying patients.  

Halfway through, we find an “Intermission: In which Fast Medicine and Slow Medicine Come Together.” With a year off, Sweet signs on as physician for a trekking group headed for Nepal. Unexpectedly, she treats an Englishman in the Himalayas. Returning home, she treats a man whose pulse is declining and rides a helicopter with him to a hospital. She realizes that she can take on the full responsibility of being a doctor, including when to use Fast medicine and when to use Slow.  

The following chapters deal with the 1980s emergence of AIDS, a hand injury to Sweet (she sees herself as “a wounded healer,” p. 182), her new understanding of medicine as “A Craft, A Science, and an Art” (Chapter 12) and conflicts between medical care and economics-driven medicine (“checked boxes,” administrators, quality assurance, even outright corruption).  She scorns use of the labels “health-care providers” and “health-care consumers” (p. 211) and discovers Hildegard of Bingen’s medieval vision of medicine. She works for 20 years at Laguna Honda, the topic of her earlier book God’s Hotel (2012). Chapter 16 closes the book with “A Slow Medicine Manifesto.”  

Sweet pays tribute to her teachers, both in a dedication to the book, and throughout the pages: professors, preceptors, nurses—especially a series of Irish Kathleens—and patients. There are some 20 case studies of patients throughout the book, their medical dilemmas, their personalities, and Sweet’s Slow Medicine that involves creating a healing relationship with them, finding the right path for treatment, even watching and waiting.

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Annotated by:
Natter, Michael

Primary Category: Literature / Nonfiction

Genre: Graphic Novel

Summary:

Taking Turns, Stories from HIV/AIDS Care Unit 371, is a graphic novel written and illustrated by nurse and artist, MK Czerwiec. In it, she details what it was like to be a nurse during the AIDs epidemic in Chicago in the 1990s. The book, however, is much more than a story about AIDS care during that time. Czerweic tackles patient/provider relationships, boundaries, hospital struggles, the role of art in medicine and healing, but most profoundly: death and dying. 

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Annotated by:
Bruell, Lucy

Primary Category: Literature / Nonfiction

Genre: Longform journalism

Summary:

Emergency Doctor is a riveting, informative account of the workings of the Emergency Department at Bellevue Hospital in New York City, the oldest public hospital in the country.  On any given day, tourists, residents, the wealthy and those who live in shelters come to the Emergency Department, some with life threatening injuries and others who need little more than a hot meal and a shower.  No one is turned away.  

Published in 1987, the book was written by a former editor at Reader’s Digest in cooperation with Dr. Lewis Goldfrank, the former Director of Emergency Services and a leading toxicologist.  Goldfrank’s personal story of his path to emergency medicine and his experience in creating the Emergency Department out of what was once known as the Emergency Room frame the narrative, but the main focus is on the day to day activities of the patients and staff in the Emergency Department.  Because Bellevue is NYC’s main trauma center, the book is rich with stories of trauma including construction accidents, cardiac arrests, fires and suicide attempts among others.  Even the title chapters-- "A Question of Poison," "An Alkaloid Plague," "The Case of the Crazed Executives," for example—convey the urgency and medical detective work needed for each person who comes through the triage area. 
“We don’t know if a patient is alive or dead when we first see him,” Dr. Goldfrank says.  “And we’re never sure what we’re going to find, or what kind of emergency medicine we may be called upon to practice—surgery, neurology, pediatrics, psychiatry, cardiology, obstetrics. (p118)   Accident victims are stabilized in the trauma area and rushed to the operating room. People with cancer, or TB, children who have been abused, broken bones, suicide attempts, accidental or intentional poisoning and overdoses—all must be evaluated and decisions made whether they should be admitted to a medical floor, the operating room or perhaps kept for observation.

Beyond medical expertise, however, working in the Emergency Department requires a large dose of compassion to cope with the needs of patients who rely on the Emergency Department for basic care for their chronic conditions such as asthma,  and social services because they lack a place to live or have no means of support.   Perhaps they need to detox from alcohol or have mental health issues.  “Emergency medicine demands the most intense involvement personally and intellectually,” observes Dr. Stephen Waxman. “Every area of clinical medicine is practiced, every emotion is taxed.”  (p 119)      



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