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.

View full annotation

Sinkhole

Patterson, Juliet

Last Updated: Jan-18-2023

Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The first few pages of Sinkhole recount the final moments of the author’s father’s life, as the author imagines they occurred. Slipping away from the bedroom where his wife sleeps, her father writes a note and leaves the house for the last time. It is nearly zero degrees in Minneapolis as he proceeds to the park where he usually walks his dog. All of this has been methodically planned: “My father chooses to die on the north end of the bridge. There, the canopy is so dense that, from the street, the structure appears to grow from the hill. In the dim light spreading from the railings, the crown of its arch bestows darkness” (p.4).

Immediately following her father’s suicide, author Juliet Patterson is, naturally, overcome. After the initial shock, she begins to wonder about her father’s motivation. She realizes she did not know him as well as she had thought. Theirs is a family that “rarely talked about important things” (p.9). One of those things is that both her father’s father and mother’s father had also taken their own lives. She begins to ask questions: “Who were these men? What led to these deaths in my family? What did my family’s history of suicide imply? And what did it mean for my own future?” (p.10) The remainder of Sinkhole tells the story of how the author investigates the death of her grandfathers, a quest that takes her back to her family’s ancestral home in Kansas.

One day, on an impulse, the author locates her grandmother’s abandoned house. Like other properties in this part of the country where there were formerly mines, it has fallen into a sinkhole. She sees the “terrifying alien world of a sinkhole” (p.111) as a metaphor for “a realm that I could not enter,” as she struggles to make sense of her family’s past. Eventually she undergoes a transformation and comes to terms with her loss. The least she can do to break the cycle is to be honest about her family history with her young son.

View full annotation

Bookends: A Family Doctor Explores Birth, Death, and Tokothanatology

Boron, Susan

Last Updated: Dec-06-2022

Duffin, Jacalyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Through ten short chapters, family doctor Susan Boron explains the origin of her neologism, “tokothanatology,” the study of common practices that surround both birth and death, events that “bookend” our existence. Daughter of an obstetrician who pioneered family-centered birth and spouse of a man who worked in palliative care, Boron noticed the tremendous similarities in the gestures, rituals, and obligations of dealing with both the beginning and the end of life. The obligations extend to the loved ones in the sphere of patients in care--a practice, she writes, “from pre-cradle to post-grave.”

One chapter reviews the rituals emerging from many different cultures and religions; another examines portrayals of birthing and dying in image and word; yet another addresses the impact of sudden and unanticipated outcomes. Ethical and legal dilemmas and the contingencies imposed by time and place are discussed frankly.

Recognizing the advantages of medical technologies, she is nevertheless skeptical of their utility in every case and includes practical advice for dealing with pain, showing that midwifery techniques could enhance palliation. Throughout, she acknowledges that things have changed, are changing, and will change again. Sources are referenced in footnotes.

In the end, the repeated message is one we’ve heard many times before, offered in a refreshing way: the importance of empathy and of listening to the patient's wishes in birthing and in dying.

View full annotation

Strangers to Ourselves: Unsettled Minds and the Stories That Make Us

Aviv, Rachel

Last Updated: Oct-18-2022

Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

When Rachel Aviv, the author of Strangers to Ourselves, was six years old, she simply stopped eating. She said she got the idea from the Yom Kippur fast. She was promptly checked into a psychiatric hospital where she became one of the youngest-ever patients to be given the diagnosis of anorexia. Through associating with older, more seasoned anorexic girls she became a sort of “anorexic-in-training” (p.13). Fortunately, after a few months she snapped out of it, and was discharged. She never suffered from the same symptoms again.

As an adult, Aviv began to think about what had happened to her. The only remnant of her experience was a diary entry from age 8: “I had a diseas called anexexia” (p.231). Had she even had the disorder, or had the diagnosis been a mistake? Why had she not gone on to have “an anorexic ‘career’” (ibid.), while one of the girls who had mentored her ultimately died of anorexia-related causes? In order to answer these questions for herself, Aviv meets with the therapists who treated her more than thirty years ago as well as with the family of her deceased copatient.

As a result of Aviv’s introspection, she becomes intrigued by people whose psychiatric diagnoses do not fully capture the complexities of their situation. Strangers to Ourselves presents detailed case histories of several such individuals. Bapu is an Indian woman whose visions have caused her to be diagnosed with schizophrenia. Are they delusions, or is she a mystic? Naomi is a socially disadvantaged black woman who has struggled unsuccessfully to get ahead. During a manic episode, she jumps into a river with her young twins, one of whom dies. Her claim that “white people are out to get me” (p. 146) is ignored because her doctors insist that “delusions couldn’t on some level make sense” (p. 150). Yet another woman, Laura, bounces from diagnosis to diagnosis, and sleeps fourteen hours a day because of all the medication she is on. She becomes one of these people who no longer even know if their lack of functioning is “due to their underlying disorder [or] the heavy medications they’d taken for it” (p. 203).

View full annotation

The End of Her: Racing against Alzheimers to solve a murder

Hoffman, Wayne

Last Updated: Aug-01-2022

Duffin, Jacalyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The author’s beloved Jewish mother is a great storyteller. A favorite tale describes how her grandmother was shot dead while sitting on the family’s Winnipeg porch nursing her baby. An accomplished investigative journalist, author Hoffman assumes it is fiction but decides to investigate. He is astonished to discover that, indeed, his great-grandmother was murdered, although the details deviate slightly from the family tradition.

Through official records, the Census, and newspaper accounts he pieces together the circumstances of her life and death and the frustrated search for her killer. In the process, he learns a great deal about his ancestors and the world of Jewish immigrants in early twentieth-century Canada. Eager to share his findings, he is confronted by his mother’s decline into dementia and the poignant difficulties of grasping and reshaping memories, both collective and individual.

View full annotation

Crying in H Mart: A Memoir

Zauner, Michelle

Last Updated: Jun-23-2022

Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

While Michelle Zauner’s remarkable memoir is an expression of her profound grief after her mother died, her story simultaneously reflects on her complicated relationship with the woman she called Umma and with her own Korean-American identity. The H Mart of the title, an Asian grocery chain, provided the ingredients for the dishes that suffused their relationship, her identity, and her grief. Food and memory animate the memoir itself.

Zauner was 25 when her mother was diagnosed with an aggressive late-stage, mid-life cancer. Also the only daughter of a white American father, Zauner was a rebellious child, resentful of Umma’s version of tough love. Growing up the lone Asian student in her Oregon community, she felt both othered at school and an outsider among her Seoul relatives. Just as she was beginning to appreciate her Korean heritage and understand her mother’s love, she learned about Umma’s diagnosis.

The first half of the memoir exuberantly brings to life scenes from Zauner’s childhood and her brief post-college years in New York City, interrupted by her dedicated caregiving. Attempting to save her mother, Zauner at times overwhelmed her with her native foods. “I would radiate joy and positivity,” Zauner pledged. “I would learn to cook for her—all the things she loved to eat, and I would single-handedly keep her from withering away” (69). Her optimistic culinary efforts produce a poetry of exacting descriptions of the flavors and textures and preparation of those foods. It’s grimly ironic that the chemotherapy her mother endured wiped out her ability to taste or digest Zauner’s loving offerings of health.

The second half turns from living with Umma to living without her. Wishing to sustain her bond with her mother as Zauner grieved, she continued to prepare her Korean family’s recipes. Walking down H Mart’s redolent isles generated “waves” of sorrow that mark the enduring ebb and flow of her grief. Unsuccessful with conventional therapy, she found cooking a preferable form of self-care. “Every dish I cooked exhumed a memory. Every scent and taste brought me back for a moment to an unravaged home. Knife-cut noodles in chicken broth took me back to lunch at Myeongdong Gyoja . . . The kalguksu so dense from the rich beef stock and starchy noodles it was nearly gelatinous. My mother ordering more and more refills of their famously garlic-heavy kimchi” (212-213). As if miraculously, a few years after Umma died, Zauner’s itinerant music career ignited. The band she has fronted, Japanese Breakfast, recorded an album, Psychopop (with a song she wrote about her mother, “In Heaven”). Then they toured the U.S. and South Korea. Although her mother was skeptical about a musical career, Zauner imagined that Umma would be “glad that I had finally found a place where I belonged” (233).

View full annotation

A Matter of Death and Life

Yalom, Irvin; Yalom, Marilyn

Last Updated: Jun-02-2022

Coulehan, Jack

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

After 65 years of marriage, two life-partners face the prospect of final separation, as one of them develops multiple myeloma. This is the crisis that led Irvin Yalom, eminent psychiatrist, novelist, and pioneer of existential psychotherapy, and his wife Marilyn, acclaimed feminist author and historian, to collaborate in writing the story of their journey through Marilyn’s final months of life. In the resulting book, Irvin and Marilyn write alternating chapters until Marilyn becomes unable to write. After her death, Irvin continues with the story of his bereavement.

Marilyn’s chapters include reflections on love and illness, ranging from Emily Dickinson and Henry James to Paul the Apostle. She frequently expresses her gratitude: “I can still talk, read, and answer my emails. I am surrounded by loving people in a comfortable and attractive home.” (p. 20) Most of all, she is thankful for her husband, “the most loving of caretakers.” (p. 15) Yet, as her disease progresses, she comes “to the understanding that I would never be the same again—that I would pass through days of unspeakable misery while my body would decline and weaken.” (p. 76) She decides to pursue the option of physician-assisted suicide, which is legal in California, when her suffering becomes overwhelming.

In his chapters, Irvin resists this decision, maintaining hope for additional “good” life, despite all evidence to the contrary. Near the end, Marilyn’s pain and other symptoms become so severe that she cries out, “It’s time, Irv. It’s time. No more, please. No more.” (p. 139) Her physician arrives, confirms her intention, and surrounded by her whole family, Marilyn sucks the liquid through a straw and quietly passes away.

View full annotation

The Urge: Our History of Addiction

Fisher, Carl Erik

Last Updated: May-02-2022

Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The Urge: Our History of Addiction, by Carl Erik Fisher, a psychiatrist, is really two books in one. It is a comprehensive history of addiction from ancient times to the present day. It is also a memoir of the author’s own struggle with addiction and an attempt “to understand how I went from being a newly minted physician in a psychiatry residency program…to a psychiatric patient” (p.ix).

Fisher has grown up with two alcoholic parents. Even as his mother’s drinking “suppresses her blood counts and causes her to miss the chemo sessions I have worked so hard to arrange” (p. 294), she does not stop. Fisher’s own first drink, in high school, is a revelation. He blows his interview for his first-choice college when he shows up late and hung over. His intelligence enables him to get by, but eventually the problem catches up with him as he begins to use Adderall and marijuana to counteract the effects of alcohol. After sleeping through and missing his residency orientation, he is under scrutiny. Finally, he has a drug-induced manic episode that results in his being tasered by the police, and he is forced into treatment.

In the historical sequences of the book, we discover that one of the oldest known examples of addiction is found as far back as the Rig Veda (1000 BC). From there we move through time, learning how Native American populations were devastated by alcohol, how Alcoholics Anonymous achieved prominence, and about the multiple challenges that persist to the present day.

View full annotation

Every Last Breath: A Memoir of Two Illnesses

Jacobson, Joanne

Last Updated: Apr-11-2022

Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Five years into writing about her mother’s slow decline from a respiratory illness, Joanne Jacobson was diagnosed with a rare, life-threatening blood disease. That discovery dissolved the illusion that she and her mother had separate fates. “How could I continue writing about my mother as though I were observing her from outside the circle of Illness?” Jacobson asks (27). She can’t. And Every Last Breath becomes, as its subtitle discloses, “A Memoir of Two Illnesses.” Doubling its concern, Jacobson’s memoir in essays becomes a richer, more urgent, and ironic revision of her original project.

With writerly attentiveness, perceptive intelligence, and some impatience, the four opening essays witness the negotiations that Florence Jacobson makes with her body, her environment, and her psyche. From a distanced perspective, Jacobson wonders at her mother’s courage and stubborn animal will to go on. Her mother’s slow pace and reluctance to let go—of her possessions, her habits, her life—initially frustrate and puzzle Jacobson. She even expresses impatience with the constant sound of her mother’s oxygen pump filling the apartment, the inconvenient bulk of the oxygen canister, the tangles of tubing connecting the machine with her mother’s nostrils.

As Jacobson’s diagnosis closes the distance she perceived between herself and her mother, it ignites the memoir’s transformative insight. It’s first articulated at the end of the essay titled “Mirror Writing” and it sustains the rest of the memoir. Realizing that her mother might outlive her, Jacobson writes: “. . . I can no longer pretend that the ragged approach of death is likely to be smoothed by nature’s grace, or by the natural order. So long as I believed I was writing about my mother, I was able to hold mortality at a distance . . . Now in the mirror of my mother’s aging face I see myself” (29). In “Dead Reckoning,” when Jacobson learns that her blood is starved for oxygen, she hears her “own lungs fall into the thrumming motor’s pulse” of her mother’s respirator. Revising her response to the technology, she writes that it is “the sound of death being pushed mechanically away that is audible to me now—steadily asserting its nearness . . .” (63-4). Jacobson’s descriptions of her hospitalizations and treatments (“Written in Blood,” “If My Disease Were an Animal”) take her on solo flights toward her new understanding of herself and the “call to the imagination” that her experience issues (59). Jacobson’s elegant and vulnerable rendering of her efforts to survive pain, uncertainty, and terrifying treatments register her own courage and will to go on.

The final essays bring the shared destinies of daughter and mother together. Jacobson thinks of them as “invisibly entwined, cellular,” as she recalls that mothers’ bodies can absorb their fetuses’ cells (88). In “Book of Names,” Jacobson’s closing essay, she and her mother read out the names in Florence’s heavily edited address book, tracking the alterations in the circumstances of those whose lives she’s shared. It invokes the lists in Genesis. Begotten. Then gone.

View full annotation

The Shapeless Unease: A Year of Not Sleeping

Harvey, Samantha

Last Updated: Apr-04-2022

Teagarden, J. Russell

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

In the opening dialog, the author, Samantha Harvey, tells a friend what this book is about.

Friend:    What are you writing?
Me:    Not sure, some essays. Not really essays. Not essays at all. Some things.
Friend:    About what?
Me:         Not sure. This and that. About not sleeping, mainly. But death keeps creeping in. (p. 1)

That’s as good a description of the book as could otherwise be offered.

As unstructured as the book’s content is, so is the book’s format. The only breaks in the text are distinguished by infinity signs. Time stamps are placed within the text between some of these breaks. The times are sequenced during a night (or a composite of nights) when Harvey is awake between midnight and 7:30 am. Texts following the time stamps describe the acute effects of insomnia on her at those particular moments and could be read as diary or journal entries.

Harvey’s insomnia came suddenly at the age of forty-three and morphed into an unrelenting assault that at times made her wonder if the only sleep available to her is the sleep of the dead.

When I don’t sleep and don’t sleep and don’t sleep, I don’t want my life; neither do I have in me the propulsion (courage? know-how?) to take it. So I have to endure my life when it’s unendurable, and this is an impasse. (p. 33)

Can I escape this? The sword hangs. There is nothing to put my mind at rest – every day presents a new threat: the night. Every night is a battle, most often lost, and any victory is one day long, until its challenger comes along: the next night. I understand why people kill themselves, or break down. (p. 82)

Throughout the book, across all the text sections, and following all the time stamps, Harvey details what insomnia does to her physically, psychologically, and existentially. She desperately explores the possible causes such as menopause, fear, traffic noise, and Brexit among others, and heartbreakingly tells of all she has done to get sleep such as seeing doctors, smiling more, counting blessings, and changing behaviors. None come to any effect, as she reports to her unhelpful doctor.

I do these things, they don’t help.
Over time they will.
Over time they haven’t.
I feel unhelpable.
Nobody is unhelpable.
I am.
Nobody is. (p. 139)

Just as Harvey had informed her friend, she takes up other topics in other forms that directly or indirectly relate to her insomnia, and sometimes do not relate at all. Among the various forms are vignettes; thoughts and obsessions; meditations; and a short story. Topics include deaths in the family (including a dog’s); peculiarities of different languages; why so many TV shows have the word “secret” in their titles (she spends “nights spent thinking about this”) (p. 67); what fuels insomnia; how worry, anxiety, and fear differ from one another; writing; time; and the relationships between science and religion, and between reason and faith. Harvey’s background in philosophy shows.

A year on, Harvey discerns a cure for insomnia. Using a metaphor involving swimming against waves and currents or with waves and currents, the cure is to be derived from the “wisdom in knowing that we are sometimes the cause and influencer of our own currents and tides, which we make in otherwise still waters.” She further elaborates on this idea and how it leads to a moment when “you’ll drop each night into sleep without knowing how you once found it impossible” (p. 175).

View full annotation