Losing Thomas & Ella: A Father's Story

Weaver-Hightower, Marcus

Last Updated: Aug-23-2020

DiLeonardo, Olivia

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

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.

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I Hear Their Voices Singing: Poems New and Collected

Davis, Cortney

Last Updated: Jul-24-2020

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.

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Death is But a Dream: Finding Hope and Meaning at Life's End

Mardorossian, Carine; Kerr, Christopher

Last Updated: Mar-17-2020

Galbo, MA, MILS, Sebastian

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

Genre: Criticism

Summary:

In Death is But a Dream, Christopher Kerr, MD, PhD, the Chief Executive Officer and Chief Medical Officer of Hospice & Palliative Care Buffalo, shares his patients’ end-of-life dreams and visions. The content and intensity of these dreams vary, but often center on patients’ transient meetings with predeceased loved ones, offering a deeply spiritual sense of peace during periods of physical suffering.

Using patient interviews, Kerr’s book does not fetishize dream events as ghostly commotions or in terms of pseudo-mysticism, or insist on using a religious framework for their interpretation, explaining rather that bearing witness to and legitimizing end-of-life dream experiences constitute a new ethical imperative in the practice of palliative care: “A true holistic approach to patient care must also honor and facilitate patients’ subjective experiences and allow them to transform the dying process from a story of mere physical decline to one of spiritual ascension” (Kerr 28). Case after case, his research documents that because end-of-life dreams provide patients with a singular emotional and psychological comfort that no palliative medication can simulate, hospice professionals need to validate patient dreams by listening carefully and compassionately.

With this in mind, end-of-life dreams serve as a kind of counter-narrative to dominant cultural understandings and representations of human experiences in hospice, specifically stereotypes of terminally ill individuals as being incapable of meaningful communication, creativity, and understanding. Kerr’s patients’ narratives reveal that end-of-life dreams and visions are not trauma-inducing experiences or instances of religious prophecy, but “help reframe dying in a way that is not about last words and lost love but about strengthened selves and unbreakable bonds across lives” (142).

Death is But a Dream upends medical research, or certain “limitations of science,” that oversimplifies end-of-life dreams by attributing them to neurological deterioration, oxygen deprivation, and the side effects of pain management medication (11). The general lack of rigorous, serious-minded research in end-of-life dream experiences is inseparable, in part, from institutionalized medicine’s “inability to see dying as anything but a failure” which has produced a healthcare system that “reflects a limited view of the totality of the dying experience” (7). The patient accounts that Kerr documents, however, reveal an undeniable dimension of human experience at life’s end whose complexities may be well beyond the reaches of full scientific understanding. End-of-life dreams seem to be part of an elaborate system of compensation (to borrow a term used by Siddhartha Mukherjee), as the mind works overtime to activate and animate certain memories to diminish the physical realities of dying. “There is an adaptation—substantive, spiritual yet cognitively meaningful,” writes Kerr, “a mechanism through which the patient can emerge from the dying process with a positive psychological change” (69). Indeed, the mystery of end-of-life dreams—their visions of loved ones; of seeking forgiveness, healing, and understanding within weeks, sometimes days, of one’s death; of comforting apparitions and visitations—points to a miraculous capacity within the human heart that eases the life-to-death transition.

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Man's 4th Best Hospital

Shem, Samuel

Last Updated: Feb-28-2020

Miksanek, Tony

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Most of the group are reunited in this sequel to the 1978 blockbuster, The House of God: narrator Dr. Roy Basch and his girlfriend (now wife) Berry, former fellow interns (Eat My Dust Eddie, Hyper Hooper, the Runt, Chuck), surgeon Gath, the two articulate police officers (Gilheeny and Quick), and the Fat Man (a brilliant, larger-than-life former teaching resident). As interns, Basch and his comrades were a crazy, exhausted, cynical crew just trying to survive their brutal internship. Years later, the midlife doctors have changed but remain emotionally scarred.

The Fat Man (“Fats”), now a wealthy California internist who is beginning a biotech company targeting memory restoration, is recruited to reestablish the fortunes – financial and prestige – of Man’s Best Hospital which has slipped to 4th place in the annual hospital rankings. He calls on his former protégés to assist him in an honorable mission, “To put the human back in health care” (p34). Fats enlists other physicians (Drs. Naidoo and Humbo) along with a promising medical student (Mo Ahern) to staff his new Future of Medicine Clinic (FMC), an oasis of empathic medical care that strives to be with the patient.

Every great story needs a villain. Here the main bad guys are hospital president Jared Krashinsky, evil senior resident Jack Rowk Junior, and CEO of the BUDDIES hospital conglomerate Pat Flambeau. The electronic medical records system dubbed HEAL is a major antagonist, and the FMC docs wage war against it and the “screens.”

Poor Roy Basch works long hours, deals with family problems, has trouble paying bills, and experiences health issues (a bout of atrial fibrillation, a grand mal seizure, and alcohol use). Fats has warned of a “tipping point when medical care could go one way or another, either toward humane care or toward money and screens” (p8). Alas, the computers and cash appear victorious. A major character is killed. Many of the doctors working in the FMC including Basch leave the clinic. And fittingly, Man’s Best Hospital plummets in the latest rankings from 4th to 19th place.

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The Soul of Care: The Moral Education of A Husband and a Doctor

Kleinman, Arthur

Last Updated: Feb-10-2020

Carter, III, Albert Howard

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

A dramatic prologue depicts Joan Kleinman screaming and hitting her husband Arthur in bed. She is ill with Alzheimer’s disease and does not, for that moment, recognize him. The following chapters provide a long flashback, beginning with Arthur’s family background, his youth as a tough street kid in Brooklyn, his medical education, and his marriage to Joan. We learn of their work in China, travels, and professional success. Arthur gradually realizes that the US health care system has become “a rapidly fragmenting and increasingly chaotic and dysfunctional non-system” (p. 126). Further, he sees a reductive focus on patients as mere biological entities, ignoring their personal, familial, and cultural natures. As a result, “Caregiving in medicine has gone from bad to worse.”

Joan suffers from an atypical kind of Alzheimer’s that increased over “that dismal ten years” (p. 156) with Arthur providing care to her, at cost to himself. There is no home health aide, no team approach with doctors, indeed no wider interest in her care other than the state of her diseased brain. Kleinman vividly describes the toll on her and on him.

Kleinman is aware of the privilege he has as a Harvard doctor, well known for his psychiatric work, his teaching and writing, and his wealth—in contrast to other patients and families. Some patients go bankrupt from medical bills.

Visits to nursing homes reveal a wide range of social conditions, contexts, and levels of care; the best have a sense of “moral care” (p. 200). Joan’s final days are hard. Supportive family members agree to her living will and healthcare proxy for morphine pain control only. She dies, apparently “at peace” (p. 232).

In the last pages Kleinman introduces the notion of “soul” as “essential human interactions” (p. 238). He discusses some of the limits of medicine (see paradoxes below) but also praises local efforts to improve humane care, such as team approaches, uses of narrative medicine, and medical/health humanities programs.

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The Father

Zeller, Florian; Hampton, Christopher

Last Updated: Nov-19-2019

Teagarden, J. Russell

Primary Category: Literature / Plays — Secondary Category: Performing Arts / Theater

Genre: Play

Summary:

This annotation is based on a live performance presented by the Manhattan Theater Club at the Samuel J. Friedman Theater in New York City that ran between April and June of 2016. The play was nominated for a 2016 Tony Award for best play, and Frank Langella won the 2016 Tony Award for best performance by an actor in a leading role in a play. In supporting roles were Kathryn Erbe, Brian Avers, Charles Borland, Hannah Cabell, and Kathleen McNenny.

The Father is the story of an older man with Alzheimer’s disease (André) and his progression through first living on his own, then living with his daughter (Anne), and finally living in a nursing home. Or, is it? It’s hard to tell, and that is the intention of the playwright, Florian Zeller, who told The Guardian (2015), “The Father is about an old man lost in the labyrinth of his mind.” The objective of the play is to bring audience members into the actual dementia experience so that rather than witnessing André’s disorientation they feel his disorientation.

The director, Doug Hughes, creates the audience experience through an interplay among set designs, lighting effects, repeated scene sequences, and time loops as contexts for various symptom manifestations like memory loss, paranoia, anger, and lasciviousness. All the scenes take place in one room that serves at different times as André’s flat, Anne’s flat, and a nursing home room. The furnishings of the room change based on the supposed setting, but the walls are exactly the same for all of them. In different scenes, André is not always sure where he is, and neither is the audience.

Early in the play, André hears Anne tell him she’s relocating from Paris to London with her lover, but she is present to him in most of the scenes thereafter and until the end of the play when he’s told by a nurse that Anne had moved to London some time ago. Had she really left Paris and was never actually there in all those other scenes? He wonders and so does the audience. In other scenes, the way characters from the past and present enter and exit distorts time for André, and so while audience members know the linear trajectory of the disease course, they can’t be sure of where they are in that course during a given scene. With the last scene taking place in André’s nursing home room with the same walls seen in his flat and Anne’s flat, the audience can’t be faulted for wondering whether all that came before was just one of André’s hallucinations.

The play does not keep audience members in a perpetual state of confusion and despondency. Farcical elements are peppered throughout that produce occasional laughs, such as when Anne contests André’s account of a previous conversation, he suggests it’s she who has the memory problem: “You’ve forgotten. Listen, Anne, I have a feeling you sometimes suffer from memory loss. You do, I’m telling you. It’s worrying me. Haven’t you noticed?”

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Breaking & Mending: A Junior Doctor's Stories of Compassion and Burnout

Cannon, Joanna

Last Updated: Oct-21-2019

Miksanek, Tony

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

A British physician-writer reflects on her topsy-turvy medical training emphasizing the mental and emotional burden of becoming a doctor. In 22 brief chapters with titles including "The Darkest Hour," "Buried," and "The Wrong Kind of Kindness," a struggle between hope and despair furiously plays out - in patients, hospital staff, and the narrator.

Dr. Jo (as one patient calls her) remembers interviewing for medical school admission, the difficulty dissecting a cadaver, starting lots of IV's, dutifully toting an almost always buzzing pager, and breaking bad news. She shares with readers her own serious car accident with resulting facial injuries. She comments on the underfunded UK National Health Service (NHS) that is "held together by the goodwill of those who work within it, but even then it will fracture" (p104).

Anecdotes of memorable encounters are scattered throughout the narrative: a fortyish woman in the emergency department who describes a fast pulse and sense of impending doom diagnosed as having an anxiety attack who ten minutes later suffers a cardiac arrest, a man with severe schizophrenia, a suicide, an elderly blind person, a young woman with metastatic breast cancer.

But the lessons that have stuck with her are primarily dark and somber ones. "Sacrifice and the surrender of the self are woven into the job" (p77). She realizes that "perhaps not all good doctors are good people" (p125) and that as wonderful and essential as the virtue of compassion is, "compassion will eat away at your sanity" (p16). She chooses psychiatry as a specialty where kindness, empathy, creating trust with patients, and careful listening work wonders for people. "I learned that saving a life often has nothing to do with a scalpel or a defibrillator" (pp13-14).

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The Genius of Marian

Fitch, Anna; White, Banker

Last Updated: Sep-16-2019

Teagarden, J. Russell

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Pamela Steele White was diagnosed with early onset Alzheimer’s disease at the age of sixty-one. A year later, in 2009, as her disease progression was evident, her son Banker, a documentary filmmaker, turned his camera on, and he kept it on until the autumn of 2012. His mother lived another four years.

The film begins showing the cruelest of ironies at work. Pam looks up at the camera, introduces herself, and says she’s working on a project she calls, “The Genius of Marian.” Marian is her late mother, who was an accomplished painter. She had Alzheimer’s disease before she died in 2001. Pam’s purpose with her project was to keep her mother alive “by at least not forgetting who she was.” Alas, she confesses she hadn’t been working on the project because she had forgot about it until just recently.

The film covers Pam’s plight over the next three years in various settings that show her mental and physical capabilities at the time. She answers questions family members and her doctor pose; we see her on family outings, and at moments when she’s captured alone lost in her thoughts, and lost in her house. We mostly see her struggle with memories and words, and with physical coordination (e.g., putting on a jacket). Some conversations reveal that Pam exhibited aggression and agitation, but we never see any of these episodes, only some nonviolent defiance on occasion.

Family members are also a focus, mostly in the form of interviews. Pam’s husband of 40 years, Ed, is interviewed several times throughout the span of the film. As we see Pam’s capabilities diminish, we see Ed’s burden compound and his responses gather pathos. Pam’s only daughter and her younger son are interviewed and shown with their mother to a lesser degree. Some friends of many years are interviewed once or twice to round out the perspectives on Pam’s course over the time of the filming.

The film is augmented with family movies capturing scenes of Pam and her brother with their parents, of Pam and Ed with their children, and of Pam and Ed with their children's children. These scenes are often spliced into the documentary footage to show similar outings at similar locations across the three generations.

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Ladysitting: My Year with Nana at the End of Her Century

Cary, Lorene

Last Updated: Sep-03-2019

Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

In Ladysitting, novelist and memoirist Lorene Carey writes candidly and reflectively about the year and a half she cared for her century-old, ferociously independent paternal grandmother. The experience became a critical moment for personal and familial discovery. Carey’s intensive caregiving began when Nana Jackson could not be discharged from the hospital to the house where, for decades, she had lived by herself. Growing up, Carey enjoyed enchanted weekends of indulgence in Nana’s sunlit suburban home in South Jersey, a respite from her family’s life in urban West Philadelphia. Partly in gratitude for those weekends, partly from a sense of duty, Carey made physical, emotional, and spiritual space for Nana in the home she shared with her husband, a minister, and their teenage daughter. Along with Carey’s own artistic, community, and professional commitments, she also maintained the property management business that her grandmother ran until her confinement. Carey’s decision to become Nana’s primary caregiver brought momentary satisfactions along with overwhelming frustrations.

Carey’s narrative agilely transitions between present encounters with Nana Jackson and the past: her own past and her African- and Caribbean-American relations’. By doing so, Carey tries to make sense of the complicated woman in her care, herself, and relationships within her family. She discovered generations of mostly “free-people-of-color,” several financially and politically successful, whose ambitions confronted Reconstruction, the Jim Crow South, the migration north, and the “lynchings [that] made sure that every gain would be paid for in blood and money, if not by [her family], then by other black people, somewhere.” How might that history, Carey asks, help her understand her family’s generations of divorces (including her own), alcoholism, deceptions, estrangements, and the elusive efforts of one generation to build on the accomplishments of the others?

It took Carey ten years to research and reflect on that question. And then to write, hoping “to clear away the rage, uncover the simple grief, stored in the muscles that seized up then and cannot remember how they were before, and to convince us both, Nana and myself, that she has left this plane. And to forgive.”

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Strange Relation—A memoir of marriage, dementia, and poetry

Hadas, Rachel

Last Updated: Aug-18-2019

Ratzan, Richard M.

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Strange Relation is a memoir of the terminal illness of George Edwards, a composer and professor of music at Columbia University, written by Rachel Hadas, his wife, a well- known poet and herself a professor of English at Rutgers University. Hadas begins with the insidious onset of Edwards's dementia, which is eventually diagnosed as frontotemporal dementia, a slow neurodegenerative disease characterized by a progressive paucity - and then absence - of communication, especially speech. She then continues with their meetings with physicians, especially neurologists, social workers, support groups and eventually nursing home personnel, recording, often in the form of her poems, her thoughts and reactions at the time.

The book consists of short chapters, more or less chronological, with occasional flashbacks to earlier periods in her life or their marriage. In addition to her poems, there are ubiquitous references to literature, many of them familiar, as well as not so familiar illness narratives by patients and relatives, especially those involving dementia and bereavement. George died in 2011, the year of the publication of this book, after 33 years of marriage to Ms. Hadas.

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