Showing 1 - 10 of 890 annotations tagged with the keyword "Patient Experience"

Parenthesis

Durand, Élodie

Last Updated: Apr-23-2021
Annotated by:
Miksanek, Tony

Primary Category: Literature / Nonfiction

Genre: Graphic Memoir

Summary:

Judith, a French woman in her early twenties, experiences "spells" - episodes of shaking, staring, and sudden memory loss. These spells occur daily and her behavior becomes erratic. She visits a neurologist. He diagnoses epileptic seizures and prescribes medication. Yet the convulsions continue so Judith's drug dose is upped and an MRI of the brain is done.

The MRI scan finds a small tumor that appears inoperable. A brain biopsy reveals an astrocytoma. Judith's life now revolves around her illness and the medical monitoring of it. Time feels distorted, and she likens her seizures to "a little death." Everyday life becomes blurred. She is advised to see a neuropsychiatrist. Her parents worry about her constantly.

Eventually Judith is referred for Gamma Knife radiosurgery. Eighteen months after the procedure is completed, only a tiny scar at the site of the tumor remains. Three years following the treatment, the seizures are gone. She rediscovers the joy of life and embraces a hopeful future.

View full annotation

Motherless Brooklyn

Lethem, Jonathan

Last Updated: Apr-12-2021
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Lionel Essrog is the narrator and main character of the novel, although when his Tourette syndrome kicks in, he might introduce himself as: “Liable Guesscog, Final Escrow, Ironic Pissclam, and so on” (p. 7). Tourette syndrome is a neurological condition causing involuntary, repetitive movements and vocal sounds (e.g., words, utterances, growls)—tics. 

Lionel lived at the Saint Vincent Orphanage in Brooklyn, New York until a local “penny-ante hood,” Frank Minna, recruited him and three other “white boys” to do his bidding as a “motley gang of high-school-dropout orphans.” (p. 291) Truck piracy was their first line of work, all the while oblivious about why they were moving boxes from one truck to another. Minna expanded his business into more lucrative and dangerous activities under the façade of a limousine service and private detective agency. He gets too close to the sun and is murdered. Lionel liked Minna, who became a father figure to him, accepted his Tourette quirkiness, and even conspired with him to throw their clients off balance when it served their purpose. Though Lionel admitted, “We were as much errand boys as detectives,” he recasts himself as a bona fide detective and makes finding the murderers his raison d’être. (p. 156) 

In typical murder-mystery fashion, Lionel must wend his way through complex relationships and find hidden clues to solve the case. In not-so-typical fashion, he contends with the Tourette syndrome accompanying him; Tourette is a major character in the book. Together, they find who murdered Frank Minna. 

View full annotation

Born to Be

Cypriano, Tania

Last Updated: Feb-26-2021
Annotated by:
Glass, Guy

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Born to Be is a documentary about the trailblazing work being done at the Mount Sinai Center for Transgender Medicine and Surgery.   

The film’s central figure is Jess Ting, a plastic surgeon who studied music at Juilliard before making a career switch to medicine.   Scenes of him with patients are interspersed with domestic clips where he is at home with his children and playing the double bass.  Just a few years ago Ting had never even performed a single gender-affirming surgery.  He is the first to admit that he did not expect his career to take this turn: “Essentially, they just asked everyone else, and everyone said no except for me.  Everyone thought I was nuts.”  Be that as it may, Ting appears to have found his calling.  In a short time, he has performed well over a thousand gender-affirming surgeries, pioneered new procedures, and helped to start a fellowship training program.  

The stories of several of the Center’s patients are interwoven with that of Dr. Ting.  One client, Cashmere, is a retired sex worker.  Years of botched silicone injections have left her face chronically swollen.   Now in her 50’s, she hopes to have the effects reversed, and to finally undergo the vaginoplasty she has been dreaming of her entire life.  Another patient, Devin, 22, goes through a transition during the course of the film, renaming herself Garnet.  Not withstanding strong family support, years of bullying in school have taken their toll as she struggles with depression. 

View full annotation

Summary:

Doctor’s Choice is a collection of 16 stories by authors from and well known in the early-to-mid 20th century. I offer four summaries of the stories that I am considering using in teaching.

“Rab and His Friends” by John Brown, MD, was originally published in 1859 and is sometimes referred to as young adult literature. It was one of Brown’s most successful works. The story is told in the voice of a medical student, “John”, and begins with his reminiscence of six years earlier when he first met the old “huge mastiff” Rab, and his “master”, a carrier named James Noble. John, who had befriended Rab during medical school, next sees him ‘one fine October day’ as he was leaving the hospital. Rab was with James who was bringing his wife, Ailie, to see a doctor because “she’s got a trouble in her breest…” (p.37). Examination showed no doubt that the tumor needed to be removed. Having survived the breast amputation (without anesthesia and observed by the narrator and his fellow students), four days later Ailie’s delirium set in. With James by her side, and with tender caring, Ailie died a few days later. Soon after James took to bed “and soon died…The grave was not difficult to reopen. A fresh fall of snow had again made things white and smooth; Rab once more looked on, and slunk home to the stable” (p.46). The next week John sought out the new carrier who took over James’s business to ask about Rab. The new carrier tried to brush him off—but admitted he killed the dog, explaining that the dog was inconsolable and that he had to “brain him wi’ a rack-pin….I could do naething else”(p.46). John thought it a fitting end… “His teeth and his friends gone, why should he keep the peace and be civil?”

“Miracle of the Fifteen Murderers” by Ben Hecht, was originally published in Collier’s Magazine in 1943. The narrator of this story passes along a tale he heard from an elderly friend, a physician who was one of 15 eminent physicians that formed a secret group meeting quarterly to discuss the ‘medical murders’ they had committed. The group had been meeting for the past 20 years, but had disbanded due to the outbreak of WWII—“The world, engaged in re-examining its manners and soul, had closed the door on minor adventure” (p.139). The last meeting of the group is the subject of the tale and it describes how the newest member, a young surgeon, tricked the group into providing the diagnosis for a patient this doctor, Samuel Warner, was struggling to care for. Warner explained that his patient—who he had befriended--, a young Negro boy of “seventeen, was an amazingly talented [poet whose work] “was a cry against injustice. Every kind of injustice. Bitter and burning,” (p.149). After working hard for 2 weeks to save his life, and realizing that his diagnosis of ulcerative colitis was wrong, Warner’s scheme (a feigned medical murder) got the eminent physicians to the diagnosis: a fishbone had caused the perforation that was threatening the poet’s life. Grabbing his hat and coat—and after thanking the doctors for the diagnosis- Warner is off to save his patient’s life. A half-hour later, rising to the call as well, the other 14 doctors joined Warner in the operating room to view the life-saving procedure, allowing one of the eminent physicians to remark with a soft cackle, that “the removal of this small object….will enable the patient to continue writing poetry denouncing the greeds and horrors of our world” (p. 154). 

There was no original publication date for “The White Cottage” by L.A.G. Strong, but it has been anthologized since at least 1940. The narrator tells of a visit by a locum town-based doctor to an island nearby to help a woman give birth at her home. The perilous journey from the town to the island with the expectant father and a neighbor as navigators and rowers ends with all thoroughly drenched from a storm after nearly capsizing. Realizing that the doctor has no dry clothes to change into, the couple offers him the husband’s flannel nightgown and a blanket. The doctor, after checking the wife and estimating a number of hours of labor ahead, goes to the living room by the fire. Fearing he’s still chilled, the couple decides to make room in their bed for him. After hesitating for a moment, he climbs in next to the husband. After some small talk and an ‘order’ for the soon-to-be mother to lay on her side and have her husband rub her back, the doctor begins to assess the situation he finds himself in: “Right living was not obedience to rule: it was a balance, renewed each instant, like a tight-rope walker’s, a tension between opposites. Here, for a moment, in this bed, in this cottage, in this tiny focus of life, beneath storm and towering sky, was wisdom. Men did not possess wisdom. It possessed them. Like a light, it flickered here and there over the vast dark mass of humanity, illuminating briefly every now and then a single understanding. Here, for the moment, it possessed him; and by its light he gave thanks, and loved all men” (p. 249). After a successful delivery (and some celebratory drink and breakfast), the doctor was off to his town with a promise to return for a checkup. His new friend demurred. “No trouble man. It’s a pleasure—besides being my plain duty. Mind you, she’ll be right as rain. But I’ll come” (p.252), responded the doctor. After a silent handshake, and suddenly finding “eyes full of tears … he clambered into the boat” (p. 252).

“Doc Mellhorn and the Pearly Gates” by Stephen Vincent Benet was originally published in 1929. The story begins with an in-depth description of a humble, impish (having mastered many diversionary tricks), and independent small town doctor and the place he practices, but quickly moves to much larger realms through Benet’s use of magical realism. Doc Mellhorn has died but has not fully landed in his final destination, heaven, and decides to spend a bit of time in hell first because of the perceived lack of opportunity to practice medicine in heaven (and an off-putting encounter with an overly officious clerk at the pearly gates). When he gets to hell, he gets to work on setting up a clinic—“mostly sprains, fractures, bruises and dislocations, of course, with occasional burns and scalds… [reminding him] a good deal of his practice in Steeltown, especially when it came to foreign bodies in the eye” (p.23). After a number of months, and a confrontation with another officious bureaucrat, Doc got back on the road to his original destination, giving him some time to think about whether he was deserving of that final abode. “I’m a doctor. I can’t work miracles,” he thought. “Then the black fit came over him and he remembered all the times he’d been wrong and the people he couldn’t do anything for” (p.28).  Landing for a second time at the pearly gates, he finds family waiting for him with assurances that there’s more than just eternal peace in heaven. “They wouldn’t all arrive in first-class shape," (p.31) explains his Uncle Frank, assuring him that there will be lots of work for him to do. Uncle Frank also lets him know that a delegation is coming to meet him since Doc had “broken pretty near every regulation except fire laws, and refused the Gate first crack” (p. 32). Then, out of a phalanx of famous doctors (from a list that Doc began to create during his first, shortened visit), appeared—with “winged staff entwined with two fangless serpents”-- his top choice--- Aesculapius. “The bearded figure stopped in front of Doc Mellhorn. Welcome brother, said Aesculapius. It’s an honor to meet you, Doctor, said Doc Mellhorn. He shook the outstretched hand. Then he took a silver half dollar from the mouth of the left-hand snake” (p.32). ….I laughed out loud—and couldn’t imagine a better ending.




View full annotation

Holding the Man

Armfield, Neil

Last Updated: Jan-10-2021
Annotated by:
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.

View full annotation

Face Time

Moore, Lorrie

Last Updated: Oct-28-2020
Annotated by:
Galbo, Sebastian

Primary Category: Literature / Fiction

Genre: Short Story

Summary:

In the lonely glow of her computer, Lorrie Moore’s protagonist FaceTimes her father, who is quarantined in a hospital after contracting the COVID-19 virus following hip surgery. She explains to him the circumstances of the pandemic and names the celebrities and political personages who have tested positive for the virus. Befuddled by hydroxychloroquine, her father passes in and out of hallucination and lucid conversation but jokes when he can despite the side-effects of the “bullshit malaria drugs.” The counterpoint to her sadness for her father is revulsion for the “ghastly” new rituals and habits of indefinite quarantine—the performative antics of Zoom concerts, YouTube binges, bizarre insurance commercials, Bible readings, and social distancing. She is appalled, too, by “well-to-do white families in large suburban homes” that claim “the pandemic for themselves,” families that sanitize grocery bags and order from Amazon and Grubhub. Intermingled with the numbing ennui of quarantine is disgust for the consumerism that thoughtlessly implicates human life, the front-line workers who make these convenient services possible. The protagonist and her sisters coax the hospital staff to comfort their father, play his requested Brahms symphony (any one of the four will do), and give him lemonade, but the “visored hazmatted nurses dressed like beekeepers” are overwhelmed and appear unapproachable, even threatening.

These FaceTime calls become increasingly bewildering to the father. The protagonist’s sister invites her to join a disjointed three-way FaceTime, but the call is interrupted by one of the father’s hydroxychloroquine-induced hallucinations. With “a howl of anguish” and “grimace with agony and sorrow,” he utters German expressions recalled from his war days. The protagonist realizes that her father is “imagining he was a prisoner of war; that was what it must have felt to him—the cruel isolation, the medicine, the lights, the strange machines all around him.” Like the ebbing signal of a satellite in some faraway orbit, contact with her father grows tenuous. For the next FaceTime call, a nurse says her father is asleep. The following day, she waits again for a scheduled FaceTime chat. She phones the hospital to inquire about her father’s missed call but is put on hold, then disconnected. Later, at midnight, the hospital calls to inform her that her father has died.

View full annotation

Annotated by:
Kohn, Martin

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

The Talking Cure is Jack Coulehan’s 11th book, seven of which, including this collection, are books of his poetry. This collection begins with selected works from his six previous books of poetry and continues with a selection of poems in the imagined voice of Chekhov. These sections are followed by previously uncollected poems, and the book ends with 25 new poems reflecting the title of this book--“The Talking Cure”. The poems represent multiple viewpoints—patients, caregivers, family members as they struggle to make sense of the vicissitudes—and unexpected joys—in life. The poems have appeared over the past four decades in medical journals (primarily Annals of Internal Medicine and Journal of the American Medical Association) and in many literary journals including Prairie Schooner and Negative Capability Press. 

View full annotation

Annotated by:
DiLeonardo, Olivia

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

Genre: Graphic Memoir

Summary:

Dr. Weaver-Hightower wrote, illustrated, and published this powerful graphic work in the Journal of Medical Humanities.  The comic itself is presented in a traditional paneled format, with a few exceptions, and rendered in a moody ink wash in black, white, and various shades of darker and lighter greys. The story is told in the authentic, sometimes faltering voice, of the father of Thomas and Ella, a pair of twin infants who died at 22 and 24 weeks into pregnancy. Beginning with their harrowing trip to the hospital, the comic describes the father and mother’s loss of Ella, shortly after she was born prematurely; their subsequent wait for Thomas to reach the “viable” age of 24 weeks; his stillbirth; and the couple’s sudden discharge from the hospital, going home with “empty arms”.  The story then transitions into “The Long After”, including the funeral and the phases of the parents’ grieving process.  The father describes his grief, frustrations, the couple’s differing ways of coping, and his ambivalence and anger toward religion as a source of comfort or deeper understanding.  On the last page, he recounts their hopes and fears as they enter into their second pregnancy, concluding with panels of the father wrestling with how to understand and process this loss.  The final panel is an image of the father in profile, expressionless, saying nothing, a fitting conclusion to a story for which words seem to fail. 

With this piece, the author introduces us to the genre of the “research comic”. The comic is followed by a methodological appendix, which explains the author’s process for choosing, capturing, and relating this history in words and illustrations, as well as his rationale for selecting a comic or graphic memoir format for the piece.  The author also elaborates upon the concept of the comic as a form of “rigorous, informative research” (226).  The appendix is very interesting and will satisfy the curiosity of readers asking the questions, “How did he do this?”, or “Why is this story a comic?”, but the piece stands on its own without the appendix, as well.  

View full annotation

Annotated by:
Donley, Carol

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

 Cortney Davis has divided this collection of her poetry into seven major sections which she calls “Voices.” The first and last sections are “Voices of Healing” which frame and wrap around the others: “Home,” “Desire,” “Suffering,” “Faith,” and “Letting Go and Holding On.” The sections include previously published poems as well as new ones.  Davis is known for her ability to see and understand what is going on and to express that in ways that help the reader “get it.”  This collection also shows her ability to hear the unique voices that express suffering, faith, desire—and to convey empathic understanding of the speaker.  Sometimes she gets angry with the speaker. The poems range through time, from her childhood, nursing training, nursing experiences, deaths of her parents, to more current experiences with grandchildren.  Throughout there is a consistent caring and compassion, mixed with many other feelings, many of them contradictory.

View full annotation

Annotated by:
Grogan, Katie

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

In her memoir Ask Me About My Uterus, science writer Abby Norman tells two intertwined stories: one about her fraught relationship with her own chronically ill body, and another about the fraught relationship between women and medicine. Norman is a sophomore at her dream college when a sudden, unrelenting abdominal pain sends her to the emergency room—and into a revolving door of medical appointments for years to come. Thus begins her diagnostic odyssey, protracted by an infuriating obstacle: not only must she endure excruciating pain, she must convince doctors that it’s real.

Norman is eventually diagnosed with endometriosis but has several frustrating clinical encounters along the way. Her symptoms are repeatedly minimized or disbelieved by doctors of various identities and specialties. One actually says the words that have long been inferred to Norman and so many women before her: “This is all in your head.” Finally receiving an accurate diagnosis provides some measure of clarity about Norman’s pain but little in the way of relief. She learns firsthand that medical knowledge about endometriosis is desperately lacking—a troubling realization given its prevalence. A commonly cited statistic suggests one in ten women have endometriosis but, as Norman notes, most studies have excluded marginalized communities, so the incidence is likely higher. Norman ultimately becomes an expert on the condition, setting her on a path to advocate for herself and others with endometriosis—and to write about it.  

The memoir is organized chronologically, beginning with the onset of Norman’s symptoms about seven years prior to the book’s publication, with occasional flashbacks that draw connections between her current crisis and her difficult childhood. She opens several chapters with descriptions of famous case studies and experiments, situating her own experience within a long and disturbing lineage of women dismissed, misdiagnosed, and mistreated by medical professionals.  

View full annotation