Showing 1 - 10 of 796 Nonfiction annotations

Your Hearts, Your Scars

Talve-Goodman, Adina

Last Updated: May-25-2023
Annotated by:
Field, Steven

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

This slim volume of essays written by a young woman who had a heart transplant packs a wallop, albeit an understated one.  The author, who had a congenital cardiac anomaly that required several surgeries—the first at one day old, another five days later, two more at the ages of two and four years—ultimately developed severe congestive heart failure at sixteen and underwent cardiac transplantation at the age of nineteen (none of this, by the way, is a spoiler; the introduction, written by her sister, lays this out in detail).   Eleven years later she developed lymphoma, a side effect of the immunocompromise induced by her anti-rejection medications, and passed away at the age of 32.  This book was published posthumously, the essays collated and edited by her sister and her friend and colleague at the literary magazine One Story. 

The essays—there are seven of them—deal with life experiences, mostly in the form of encounters with other people, mostly post-transplant.  “I Must Have Been that Man,” which won the Bellevue Literary Review’s Non-Fiction Prize,  begins with a post-party liaison but centers on the author’s meeting with a man in an upended wheelchair out on the street on a rainy night; “Men Who Love Dying Women and Fishing” speculates about what might attract a man to a woman with a terminal illness; “Your Heart, Your Scars, Zombies” offers a novel take on the idea of a zombie occupying a liminal space between the living and the dead and analogizes that to the situation of the post-transplant patient; “Thank God for the Nights That Go Right” speaks to the serendipity—or Higher Power?—that seems to guide our experiences.   They range over the timeline; one recounts a pre-transplant trip with other ill children to San Diego, others come from later in the author’s life.  There is no linear temporal progression to the essays; rather, one gets the impression that they are simply being remembered spontaneously.  Nonetheless, a clear personal narrative emerges.

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Annotated by:
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 Last Strawberry

Swan, Rita

Last Updated: Mar-12-2023

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

In her memoir, The Last Strawberry, Rita Swan describes the illness and death of her sixteen-month-old son, Matthew. As practicing Christian Scientists, Swan and her husband observe their son’s sudden symptoms and unusual behavior but do not visit a pediatrician. Instead, they hire Christian Science “practitioners” whose goal is to effect a cure through prayer. These prayers, however, fail, and Matthew’s condition quickly deteriorates. After days of unsuccessful faith-based treatment, Swan decides, in desperation, to bring her son to a hospital, where he is diagnosed with advanced spinal meningitis. Swan recalls, “We brought our Christian Science books to our comatose child in the intensive care unit. We read, whispered, prayed, and cried over him for hours every day, whether our Church believed it was right or not” (37). Matthew eventually died in the hospital in July 1977.

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Sinkhole

Patterson, Juliet

Last Updated: Jan-18-2023
Annotated by:
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.     

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Anna Gasperini builds on existing scholarship by examining how Victorian ‘penny blood’ literature depicted working-class readers’ anxieties concerning medical dissection following the 1832 Anatomy Act. Within the historical context of Britain, a dearth of cadavers spurred the rise of various crimes, including body-snatching, graverobbing, and murder. While the families of the middle- and upper-class dead could finance a funeral and secure a place of safe rest, such as in an ancestral vault or tomb, the poor were often buried in shallow or mass graves. These burial sites were often unearthed, and the bodies were sold to (knowing and unknowing) medical men for anatomical examination. To quell these crimes, government authorities instated the 1832 Anatomy Act, which was “a law that allowed anatomists to source dissection material from the pauper” (xii). More specifically, Gasperini explains, “[w]hen it was passed, the Anatomy Act imposed that the bodies of those who were too poor, or whose families were too poor, to afford a funeral were to be handed over to the anatomy schools for dissection” (xii). The Anatomy Act, disregarding pauper consent and personal wishes, effectively targeted impoverished people who relied on workhouse support and alms, exploiting poor bodies to supply medical schools and advance research. The fear and disgust for the law were widespread: “. . . for them [working-class penny blood readers] dissection, bodysnatching, and forfeiture of one’s body to the anatomists after 48 hours under the Anatomy Act were a terrifying reality” (xiii). This fear oddly presaged Count Dracula’s remark in Tod Browning’s 1931 film: “There are far worse things awaiting man than death.” In other words, the finality of death may be incomprehensible, but posthumous desecration of the body through dissection provokes a deeper sense of horror.

Exacerbating the act’s legal conditions was the fact that “semi-literate” working-class people, although vaguely aware of the law’s significance, could not fully interpret the dense legal argot that described the new regulations—an example of cruel political skullduggery—which obscured what would happen to their bodies following death (12–13). Far from being a benevolent political gesture, the act “. . . was an exercise in rhetoric, against which the pauper—semi-literate, socially powerless, and politically underrepresented—could not possibly win” (15). Popular fears that predated and intensified following the act concretized suspicion and anger directed at physicians, the medical sciences, and mortuary practices.

These apprehensions, Gasperini argues, found vivid expression in the pages of the penny blood, a genre “churned out by underpaid hack-writers” and obsessed with storylines “involving murder, betrayal, gender-shifting, and the occasional supernatural event (not to mention scantily clad damsels in distress)” (4). While the penny blood’s serialized melodramas were derided as tawdry sensationalism by middle- and upper-class readers, the genre reflected working-class preoccupations about the Anatomy Act and how the bodies of the impoverished dead were subject to the posthumous medical gaze (4). The penny blood embraced a “generally more violent and graphic concept of entertainment that was popular among lower class individuals. . . .” (4) and constructed plots that directly tapped into long-entrenched suspicions about medical cruelty and physical dismemberment. While the era’s educated readership disdained the recognizable tropes of the penny blood—murderous graverobbers, devious surgeons, vampires, eldritch cemeteries, and cadavers—the narratives in which they figured elucidated the virulent classism and exploitation perpetuated by the Anatomy Act. 

Gasperini provides close readings of a range of penny blood texts, including Manuscripts from the Diary of a Physician (1840s), Varney the Vampyre; or: the Feast of Blood (1840s), The String of Pearls (1840s, popularly referred to as Sweeny Todd, The Demon-Barber of Fleet Street), and The Mysteries of London (1840s). Not all narratives have explicitly medical themes or characters who are physicians or anatomists, nor do the stories make overt reference to the Anatomy Act. Instead, as Gasperini’s analyses demonstrate, they all confront larger working-class anxieties concerning mortality and what might be regarded as the social afterlife of a human corpse, whether that be posthumous dissection, cannibalism, necrophagy, or some other horrific desecration of the body. Fundamentally, while the stories vary, they share a general preoccupation with the corpse’s “bodily integrity” (16), asking what forces act upon the body (or have the authority to) following death and expressing fear over the individuals and institutions that presume to disturb the repose of the dead. Indeed, for all the penny blood’s grotesquery, there is a tacit insistence on the sanctity of the corpse; however, as Gasperini illustrates, the genre does not flinch from revealing the grim consequences of disturbing this repose in the interests of greed and medical progress.

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Annotated by:
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. 

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In Medical Bondage: Race, Gender, and the Origins of American Gynecology, Owens argues that the emergence, practice, and professionalization of American gynecology in the 19th century were inextricably enmeshed with the institution of slavery and discourses of biological racism. “Modern American gynecology,” writes Owens, “could certainly exist without slavery, but slavery’s existence allowed for the rapid development of this branch of medicine, and especially of gynecological surgery” (6). As she shows, gynecology developed as quickly as it did only because white American physicians had access to women’s bodies marked as racially inferior. That gynecology’s maturation accelerated in the American South is no indication that its practitioners had a humane interest in enslaved women’s health (66). On the contrary. Owens argues that slave owners were invested in maintaining the reproductive health of enslaved women in the interest of increasing the size of their population: “Thus the repair of any medical condition that could render an otherwise healthy slave woman incapable of bearing children further strengthened the institution of slavery” (39). Additionally, there were broader implications, as medical research using enslaved women’s bodies produced knowledge about how to treat, in turn, white women: “Black lives mattered medically because they made white lives healthier and better” (107).

This leads Owens to argue why enslaved women should be esteemed as the maternal counterparts to the oft-celebrated white ‘fathers’ of American gynecology: “. . . black women, especially those who were enslaved, can arguably be called the ‘mothers’ of this branch of medicine because of the medical roles they played as patients, plantation nurses, and midwives. Their bodies enabled the research that yielded the data for white doctors to write medical articles about gynecological illnesses, pharmacology, treatments, and cures” (25). This is especially true, as she points out, when examining the medical research of the lauded gynecologist, James Marion Sims, who opened and operated a “sick house” for enslaved women suffering from gynecological ailments (36). Sims operated this clinic to devise a surgical solution to a serious and commonplace gynecological issue among enslaved women, vesico-vaginal fistulae. As an enterprising young physician, Sims took advantage of enslaved women’s bodies to conduct his surgical trials. Eventually, he triumphed and cured an enslaved woman, and published the results in a respected medical journal, thus enshrining his reputation (39). The point, Owen emphasizes, is that “[t]hanks in large part to his experimentation on enslaved black women, Sims had established himself as one of the country’s preeminent gynecological surgeons less than a decade after he began his gynecological career” (39). Medical Bondage thus strives, in part, to restore the lives and contributions of these enslaved women to the story of American gynecology’s genesis.

Owens’ study takes a surprising turn, arguing that “. . . the later development of modern American gynecology can no more be disentangled from Irish immigration than it can be separated from its roots in slavery” (90). This shift in racial and geographic focus parallels the similar roles of enslaved black women of the South and poor, immigrant Irish women of the urban North in the development of gynecology. Owens shows how racial alterity was “mapped onto” poor Irish immigrant women living in major urban centers, such as New York City (20). As many Irish immigrant women suffered poverty, inadequate (if any) medical care, sexual assault, and were drawn into prostitution (and the attendant onslaught of venereal diseases), they became ideal medical subjects for gynecologists. Physicians eventually published their Irish patient case studies, which “. . . helped to create the foundation for the racist laws that colored the Irish as not quite white and sometimes placed them alongside black people as biological models for racial inferiority” (90). Just as Southern gynecologists had access to enslaved women’s bodies, their Northern counterparts treated and experimented on racially othered immigrant women. In this way, Owens argues, “[t]he scientific and medical beliefs that doctors held about Irish women were nearly indistinguishable to [sic] those they held about African women” (115). Overall, Medical Bondage articulates a well-researched and sobering retelling of the dominant accounts of American gynecology.

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Physician-Assisted Suicide and Euthanasia, edited by Shelton Rubenfeld and Daniel Sulmasy, is an unusual collection of scholarly essays in that it combines essays about Nazi euthanasia with others that deal with contemporary PAD (Physician Aid in Dying) and questions whether there might be a relationship between the two. This perspective is understandable, given the book’s origin. The Center for Medicine after the Holocaust, an organization with the mission “to challenge doctors, nurses, and bioethicists to personally confront the medical ethics of the Holocaust and to apply that knowledge to contemporary practice and research,” invited a group of North American and Israeli palliative care specialists and medical ethicists in 2018 to visit German sites associated with Third Reich euthanasia programs.  The intensive discussions that followed resulted in this provocative collection of papers.  

Dr. Timothy Quill is among the writers supporting the moral probity and legalization of PAD, while Drs. Diane Meier and Daniel Sulmasy present strong arguments against the practice.

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Annotated by:
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).      

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Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

In The Unseen Shore: Memories of a Christian Science Childhood, Thomas Simmons narrates the physical, emotional, and spiritual anguish of growing up in, and later leaving, the Christian Science Church. “Have I escaped now? Enormous question—who knows?” writes Simmons, “The obvious answer is Yes, of course I’ve escaped. I now go to doctors; I no longer lie for helpless hours in bed, writhing and trying to pray” (5). Christian Science teaches that illness and pain are illusions of an unreal material world, and that human suffering can be healed through prayer. As the founder of Christian Science, Mary Baker Eddy, wrote in Science and Health with Key to the Scriptures, "Sin, disease, whatever seems real to material sense, is unreal in divine Science" (353). Simmons explains how this theological indoctrination distorted his view of the material world, morality, and the human body: “I remember very clearly several occasions when Sunday school teachers would warn us that medical doctors were not to be trusted because the world they believed in was not our world—it was the world of mortal mind, of disease and distress” (4). Simmons wavers uneasily between apostasy and piety, questioning if he should trust his physical, bodily senses (“mortal mind”) or the numinous promises of Divine care. As he grows up practicing Christian Science, suffering untreated ear infections and other illnesses, he struggles to maintain a posture of devotion while coping with spiritual misgivings.

These “tremors of doubt”, however, haunt Simmons beyond childhood into his adult years (106). Yet two powerful experiences draw him away from Christian Science: the study and composition of poetry and “the love of bodies” (67). In need of a different kind of spiritual direction, Simmons turns to poets whose works celebrate the beauty of the concrete world, realizing that “. . . I want the world, want its physical hardness and qualities of light and sound, the depths of its touch and soul. In the words of poets and teachers I see my own path back into that world” (129). Another key incident occurs following a bout of spiritual renewal when Simmons interviews to become a Christian Science practitioner (a kind of minister who prays for ailing Church members). Stopping to savor the beauty of the California coastline, he hopes the gorgeous expanse will reveal a divine sign affirming his spiritual ambition. He receives an altogether different omen, however, one he considers mockingly lewd, in the form of a naked man exercising on the beach below where he sits: “And yet I could not quite leave. For a few seconds I watched this man run. Far from admiring the precision of his muscles or the stillness of his torso as he moved his legs, I rejected them: they could hold no sway over me, for they were not real. But they remained interesting in their unreality” (156). (Readers might imagine this nude interloper as Vesalius’s anatomical man from De humani corporis fabrica [1555], who stretches and moves with certainty, exhibiting the magnificent brawn and sinews of the human form.) In this moment, Simmons's spiritual optimism almost vanishes, unnerved by the physically real, naked human materiality in which he will ultimately find solace and beauty.

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