LitMed: Literature Arts Medicine Database

Plague Years: A Doctor's Journey through the AIDS Crisis

Slotten, Ross

Last Updated: Mar-13-2023

Teagarden, J. Russell

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Dr. Ross Slotten chose family medicine to serve patients from cradle to grave. But, as he was entering practice, the AIDS virus was entering the community where his practice was situated, and he found himself serving patients much closer to the grave than the cradle.

In June 1981, a few weeks before I began my internship in family practice at [St. Joseph Hospital in Chicago], the Center for Disease Control in Atlanta had published the first report of a strange lethal infection among a cohort of gay men in Los Angeles. I had no clue then that the disease would soon kill friends, former lovers, colleagues, and patients; devastate tens of millions of people and their families worldwide; and consume my entire professional life and more than half my chronological one. (p.14)

From both the circumstance of time and place he found himself in, and the sense of necessity and compassion that claimed him, Slotten’s professional trajectory unexpectedly shifted away from traditional family medicine towards specializing in AIDS. His interest in AIDS, however, extended to personal considerations, because as a gay man, he was part of the population at risk, and harbored the same anxieties and fears he saw in his patients and throughout his social circles. His patients were principally gay men because of his geographic location in an established gay community and the resulting referral patterns. The book chronicles both his experiences as a physician at Ground Zero taking care of gay men with AIDS, and his experiences as a gay man at risk for AIDS. For Slotten, these experiences were not independent of one another, which makes for rich insights on the complexities of both.

Slotten spent a lot of time at St. Joseph Hospital because his patients required intense medical support and specialized services. He tells how he and his practice partner pushed for establishing a specialized AIDS unit in the hospital. They bumped up against the usual bureaucratic obstacles, plus a few more concerning issues specific to AIDS patients, but they ultimately prevailed. Slotten “was to spend the next fifteen years there, often heartbroken, occasionally inspired” (p. 109). In contrast, Slotten recounts how some specialists he called for help with particular patients would not avail themselves to AIDS patients. Those occurrences stuck with him: “I couldn’t forgive those other physicians for abandoning me and my patients in the hours of our greatest need” (p. 108).

A blending of wanderlust, intellectual curiosity, and an urge to understand “the AIDS epidemic as a public health problem, not just a medical condition” (p. 154), motivated Slotten’s pursuit of formal postgraduate education in public health. He supplemented this education with a trip to Namibia, and reports the observations he made there, among them how “an epidemic like AIDS would be unstoppable” (p. 165), given the factors he saw at work then.

With whatever little time he had left for volunteer and advocacy work, Slotten stayed local. He talks about the volunteer-run health clinics where he worked, and the housing facility he helped set up for homeless people with AIDS. He left protesting at the Food and Drug Administration, the National Institutes of Health, and the annual International AIDS Conference to others while he focused on his patients, his studies, his volunteer work, and his own safety.

The decade of the 2020s is approaching when Slotten writes about the preceding three-and-a-half decades. As he finishes the book he is still caring for people with HIV, but the horrible complications of AIDS are now infrequent since the availability of effective medications. His practice had been reliably stable and predictable for some time, a circumstance he could only dream of when he first started. Alas, that dream had ended by the time the book was released on July 15, 2020, when Covid was surging.

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The Hours

McDermott, Phelim

Last Updated: Feb-13-2023

Brungardt, Gerard

Primary Category: Performing Arts / Theater

Genre: Theater

Summary:

This annotation is based on a live streamed performance (The Met: Live in HD) presented by the Metropolitan Opera at the Metropolitan Opera House in New York City that ran November-December of 2022. It is based on two novels: The Hours by Michael Cunningham and Virginia Woolf's Mrs. Dalloway.

The Hours follows a day in the life of three women living in three different eras in three different parts of the world. Each woman is wrestling with her own demons, which overlap with those of the others, while simultaneously remaining distinct. Clarissa is a book editor in late 20th century NYC readying for a party she is hosting that evening in honor of Richard, a writer and her former lover who is dying from AIDS. Laura is a housewife and mother in 1940's LA preparing with her son to celebrate her husband's birthday. The final character is Virginia Woolf herself in 1920's London writing her novel Mrs. Dalloway.

In each of these three narratives the central characters suffer depression, despair, loneliness, regrets, unrequited love, and suicidal longings — particularly poignant is the portrayal of each woman's aching despair in trying to discern who she herself is.

As each of the women's stories is told, the full power of the medium of opera is brought to bear. In particular, there are several scenes where two (or even all three) of the characters' stories run concurrently with alternating dialogue (e.g., Woolf voices her novel as she writes it while Laura reads aloud the same passage). Characters walk into each other's scenes. The chorus is used throughout as a kind of human milieu that gives voice to inner thoughts and feelings, even engaging in dialogue with their character. The dialogue, color palette, wardrobe, and musical style are unique and specific to each scene/period/story. Woolf's is a drab color palette and dark music; Laura has bright post-war colors and a popular music style evoking Lawrence Welk or Henry Mancini. Clarissa's world is 90's Americana with hints of Bernstein and Copland in the music.

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Fauci

Hoffman, John; Tobias, Janet

Last Updated: Mar-14-2022

Yin, Ellen
Salman, Akbar

Primary Category: Performing Arts / Film, TV, Video — Secondary Category: Performing Arts /

Genre: Film

Summary:

“The Jesuit philosophy is ‘Men for Others,’” states Dr. Fauci, the titular subject of the documentary Fauci, as he explains how his public school experiences informed his medical career. Indeed, it sets the tone for the rest of a film that traces the beginning of Dr. Fauci’s career as an infectious disease physician through to his role in the creation of PEPFAR, the 2014 Ebola outbreak, and his present day responsibilities in the current pandemic. The documentary bounces primarily between the 1980s HIV/AIDS epidemic and the start of the COVID-19 pandemic in 2020. In both, we see that Dr. Fauci stands as a figure of great controversy, and we are shown his thought process in navigating the court of public opinion.

The film starts off interviewing Dr. Fauci about his childhood in Bensonhurst, Brooklyn where he was exposed to the Jesuit philosophy that would dovetail with his choice to go into public health service when he was drafted into the Vietnam War. Though he began his medical career with aspirations for a private practice on Park Avenue, Dr. Fauci realized that his true calling lay in “trying to figure out diseases that people were dying from” at the National Institute of Allergy and Infectious Diseases where he soon faced one of the greatest public health challenges of the 1980s – piecing together a way to combat a mysterious new disease that was killing more and more Americans.

This, of course, sounds very familiar to the intended audience of the documentary. It is a parallel that Dr. Fauci himself is well aware of, stating that COVID-19 feels like a “diabolical repeat” of his experiences in the 1980s but that “the difference is [the] divisiveness dominating COVID-19 . . . we’re going to get through it in spite of this divisiveness and this politicization. We’re not going to get through it because of it.” The film leans heavily into this contrast, showcasing the evolving attitudes of many AIDS activists as Dr. Fauci went from “the enemy” to a man sitting in on ACT UP meetings and engaging in a dialogue that would culminate in a historic address at the 1990 International AIDS Conference – an address that highlighted the need for physician-scientists to incorporate the feedback of the individuals they were trying to help and reminded activists of the compassion that physician-scientists have for their patients.

In the scenes taking place in 2020, we see an explosion of both positive and negative press coverage of Dr. Fauci as the COVID pandemic kicks into high gear. His inconsistencies regarding mask guidance, his direct challenging of President Trump, and his struggle to deal with increasing death threats against himself and his family are put on full display. The documentary does not shy away from showcasing Dr. Fauci’s vulnerability with multiple instances of a tearful Fauci recounting the deterioration of many of his AIDS patients and the “post-traumatic stress” that those experiences induced. These moments of vulnerability are threaded in with images of and commentary from his wife Christine Grady and his daughter Jennifer, a clear attempt to give us a sense of Anthony Fauci the human being and not just Dr. Fauci the public servant.

As the film draws to a close, Fauci and his wife take a walk through the COVID-19 Memorial on the National Mall in Washington DC. “When you're involved in a race to stop a horrible disease, you always feel like you’re not doing things quickly enough, or well enough,” he reflects. “One of the most mysterious aspects of our universe is how viruses have transformed our civilization . . . And the one thing I can hope for . . . is that emerging infections do not inevitably become pandemics . . . I am optimistic that the lessons that we’ve learned will prevent that from happening.” After watching this documentary, it is an optimism that is easy to share.

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Pandemic Haiku

Bordowitz, Gregg

Last Updated: Dec-06-2021

Zander, Devon

Primary Category: Literature / Poetry

Genre: Collection (Poems)

The Impatient Dr. Lange: One Man's Fight to End the Global HIV Epidemic

Yasmin, Seema

Last Updated: Oct-06-2021

Zander, Devon

Primary Category: Literature / Nonfiction

Genre: Biography

Summary:

The Impatient Dr. Lange is a biography of Joseph “Joep” Lange, an HIV/AIDS researcher best known for his work in HIV transmission prevention and treatment, written by Seema Yasmin. Yasmin is a journalist, doctor, and epidemiologist whose life path was forever altered by a run-in with Dr. Lange at age 17, when he said to her, “If you want to help people, first you need to learn how to take care of them. Go to medical school.” (p. xiii). The book’s narrative parallels that of the life of her inspiration, Lange; in addition, Yasmin details the evolution of HIV, how it came to spread around the globe, and a history of antiretrovirals.

Coming of age professionally in the early 1980s, Joep Lange had a career defined by HIV and the advances to manage it. Early on, he trained as a physician before pursuing a PhD. During his PhD, he was a prolific researcher, producing “eleven papers on AIDS in his first years,” including an early case study on the appearance of acute HIV and the way in which the body’s antibody response changes in response to continued infection. His commitment to rigorous scientific inquiry continued as a professional research scientist. Most noted for his early trials about the use of antiretrovirals and their role in preventing mother-to-child transmission of HIV, he was intimately involved with much of the science used to treat and prevent HIV today. Outside of research, he was an ardent advocate of health equity, starting the PharmAccess Initiative, a group initially developed to expand access to antiretrovirals in developing countries.

Ultimately, the book is about how a life of great potential, drive, and success was tragically cut short. Shadowing the narrative of the book is the specter of Lange’s unfortunate end on Malaysia Airlines flight MH17, a plane that was mistakenly shot down over the Ukraine by pro-Russian separatists, while he was en route to the twentieth International AIDS Conference in Melbourne. The penultimate chapter reflects on all that was unfinished - projects on three continents, advising the next generation of PhDs, a novel - and ends with a prescient quote from Lange, in regard to mandatory retirement in the Netherlands at the age of 65: that even if he had 10-15 more years, he declares “that is still not enough time” (p. 174).

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Holding the Man

Armfield, Neil

Last Updated: Jan-10-2021

Brinker, Dustin

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

This film chronicles the short lives of two Australian gay men from their teenage years into the AIDS epidemic. Following the perspective of Timothy Conigrave (Ryan Corr), the audience witnesses the beginning of his relationship with John Caleo (Craig Scott) at an all-boys school in Melbourne during the 1970s. The two lead distinctly different lives: Timothy is a typical, sexually charged teenager involved in theatre, while John is a subdued, Catholic rugby player. With the help of three female friends, Tim finds himself kissing John at a private dinner party, beginning a stereotypically endearing teenage romance. Alas, their idyll dissolves with John’s father’s discovery of a love letter. He forbids the two from seeing each other, but being typical teenagers, the two disregard his wishes. They continue to date into college. While John is content with their relationship, Timothy expresses his desire to branch out, both in his romantic and professional lives. He applies to and is accepted by NIDA (the National Institute of Dramatic Art) and asks John for a separation while there. Tim, now unencumbered by a relationship, sleeps around in a montage of homoerotic encounters. Eventually Tim and John get back together, but their relationship, like those of most other homosexual men at that time, has become haunted by an insidious illness: HIV. On a seemingly routine check in 1985, both men are diagnosed positive. They assume that John was infected first given his worse lab values; however, Tim returns to his parents’ place for a wedding a few years later only to discover from the Red Cross that he was likely positive in 1981. Tim and John spend roughly the next decade in and out of the hospital, John’s condition being markedly worse than Tim’s. John dies in 1992. Tim is acknowledged as a “friend” in the funeral to appease John’s religious family despite their 15-year-long relationship. Having worked as a writer and activist since leaving NIDA, Tim makes use of his skill to write a memoir with John as the subject. Tim completes the memoir in 1994 Italy and dies ten days later.

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Global Healing

Thornber, Karen

Last Updated: Dec-14-2020

Bruell , Lucy

Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

Karen Thornber is the Harry Tuchman Levin Professor in Literature and Professor of East Asian Languages and Civilizations at Harvard. In this expansive nearly 700 page book, she draws on work from global literature to explore the many ways societies view illness, stigma and healing. She defines global literature as “narratives that grapple with challenges and crises that have global implications or counterparts globally, whether at present, in the past, or likely in the future” (p.10).

The book is divided into three sections: Shattering Stigmas, in which she looks at Leprosy, AIDS, and Alzheimer’s disease; Humanizing Healthcare; and Prioritizing Partnerships. Among the topics she addresses are patient-focused care as an imperative, the need to advance partnerships in caregiving, and support that extends beyond family and friends to the patient’s relationships with health professionals. Healing, she notes, involves “changing the circumstances that exacerbate or even trigger a health condition, enabling the individual to obtain long-term wellbeing liberated from as much distress, if not disease, as possible.” (P331).

Thornber has selected literature that addresses the illness experience and the need to reduce suffering and promote healing, which she places within three interwoven frameworks: “Societies/communities, healthcare settings, and families/ friendships” (p.583). She looks at both positive approaches to care as well as the negative impact of suffering, whether from stigma, inaccessibility to care, or dehumanized care. The book considers literary works from Africa, Asia, Europe, the Middle East, and Oceania, many that will be new to readers.

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5B

Haggis, Paul; Krauss, Dan

Last Updated: Apr-17-2020

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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BPM (Beats per Minute)

Campillo, Robin

Last Updated: Feb-20-2020

Zander, Devon

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

BPM is a fictional, French film about ACT UP Paris in the 1990s. Directed by Robin Campillo, himself a veteran of Paris’s ACT UP, the film details the realities of being an HIV/AIDS political action group during an era of governmental inaction and lack of recognition of those most impacted by HIV and AIDS. Initially, BPM focuses on the collection of individuals who make up ACT UP Paris and how they organize themselves to protest and advocate for greater media attention, better sexual education, and more access to new pharmaceutical data, among a myriad of other causes. The film eventually shifts its focus from ACT UP as a group to two of its members, a couple, one of whom, Sean, is struggling with AIDS and Nathan, his partner, who supports him together with the the rest of ACT UP.

In addition to its presentation of HIV activism, BPM documents what it meant to be HIV positive in a world without highly active antiretroviral therapy and where those most affected were largely ignored or even viewed with disdain. Historical references ground the film firmly in the 1990s, including allusions to France’s infected blood scandal when hemophiliacs were knowingly given infected blood products, discussions that led to the initial development of protease inhibitors, and ACT UP Paris’s 1993 protest on World AIDS Day when a large pink condom covered the obelisk in the Place de la Concorde. Contrasting with these larger historical references are daily moments of living with HIV in this era. Members of ACT UP are shown taking AZT and DDI around the clock (including ensuring to pack water during a protest, in case of arrest, when they may need to take medication in jail), regularly attending the funerals of friends who died of AIDS, and enduring moments of homophobia from those outside of ACT UP.

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Bodies of Truth: Personal Narratives on Illness, Disability, and Medicine

Moore, Dinty; Murphy, Erin; Nicholson, Renee

Last Updated: Jul-19-2019

Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Essay

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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