Showing 1 - 10 of 710 annotations tagged with the keyword "Illness and the Family"

Hidden Valley Road

Kolker, Robert

Last Updated: Jun-15-2020
Annotated by:
Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Biography

Summary:

The Galvins of Hidden Valley Road, just outside Colorado Springs, appear to be the kind of wholesome, all-American family that others might envy.  The tragic fact is that six of the twelve children go on to develop schizophrenia, a situation that is practically unprecedented.  In Hidden Valley Road, journalist Robert Kolker gives us the tale of the deterioration of six afflicted children and the traumatization of six healthy ones in an improbable, bucolic setting.  As one after the other reaches young adulthood in this “funhouse-mirror reflection of the American dream” (p. xxi) and inexorably succumbs to madness, the family struggles to cope.   

In their search for answers, the Galvins’s extraordinary circumstances come to the attention of researchers.  Ultimately, although there is no cure, the family makes a contribution through their genes to our understanding of schizophrenia, as a mutation is discovered that is shared by the afflicted children.   

Hidden Valley Road follows the travails of this “multiplex schizophrenia” family over so many years that there is a sea change in our understanding of the disease’s origins.  At first, it is taken for granted to be the result of a faulty upbringing at the hands of “schizophrenogenic” parents.  Later, biological explanations prevail.  Finally, a more balanced view is attained, with nature and nurture each thought to play a role.  

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5B

Haggis, Paul; Krauss, Dan

Last Updated: Apr-17-2020
Annotated by:
Teagarden, J. Russell

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

5B is a documentary about the special unit created at San Francisco General Hospital (Ward 5B) in 1983 to take care of people with AIDS. Three years later, it moved to the larger Ward 5A, where it remained in operation until 2003 after the introduction of treatments effective enough to drastically reduce the demand for hospitalization and standards of care for AIDS patients were in place throughout the hospital. The documentary covers the medical, social, and political considerations surrounding the opening of Ward 5B, and the AIDS epidemic during that time.

The story is told from various perspectives through interviews with key figures in its development and operation, and archival footage of the ward and AIDS activism in the community. The most prominent among the key figures is Cliff Morrison, a clinical nurse specialist who spearheaded the idea for the unit and then managed it. Several other nurses who served in staff and supervisory positions are featured. Participating physicians include Paul Volberding, an oncologist at the time who became pivotal in the development of effective HIV treatments, and  Julie Gerberding, a physician treating patients on the unit who later became the Director of the Centers for Disease Control (CDC). Lorraine Day, the chief of orthopedic surgery at the hospital when the unit opened is heard often as an opposing voice. Hank Plante, a local television news reporter also appears frequently to offer his perspectives on many of the social and political issues swirling around the unit. Among other participants are AIDS activists, volunteers, and family members of patients on the unit.

Several storylines frame the documentary including how nurses drove the unit’s inception and then were instrumental in running it. “Nurses were in charge,” said Volberding, admiringly. Interwoven throughout the film are the experiences of the patients and individual nurses, including one nurse who was infected with HIV from a needle stick. “Those nurses were the real heroes,” said one activist.  

The unit and those who worked there also encountered opposition from inside the hospital. The nurses of this unit practiced in ways they considered safe but not in such a manner that would preclude them from touching patients or require that they don so much protective gear they become unseeable. Nurses and other clinicians from other parts of the hospital objected and did not want to be compelled to adopt practices they thought endangered them on the occasions they took care of AIDS patients. The film follows this story through union grievances and public debates to their conclusion, which sided with the unit nurses and their advocates.

The story is told against a backdrop of gay rights activism in the 1970s that led to AIDS activism with its influence on how the unit operated. Also getting attention is the fear AIDS struck in society and the resulting social backlash at a time of federal government insouciance. This fear continued up to the time the federal government recognized the epidemic and began taking action, relieving some of the tension but never eliminating it. The documentary ends with key participants reflecting on their experiences with the unit; most were proud, some bitter, and a few a little of both.

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Mercy

Montgomery, Judith

Last Updated: Mar-27-2020
Annotated by:
Davis, Cortney

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

"Mercy," winner of the Wolf Ridge Press Narrative / Poetic Medicine Prize, contains nineteen powerful poems--poems that provide an intimate look into the author's role as caregiver to her husband who is living with, and being treated for, liposarcoma.  But the poems in this small volume are not just about husband and wife.  Cancer becomes a third character, one who is often addressed as a presence lingering in the same house, sleeping in the same bed, never absent from every moment of struggle or from any moments of joy.  In the opening poem, "Cozy" (page 1), the couple has "escaped" to a remote rented cabin.  They slip "from love-rumpled featherbed and sheets" feeling "safe" within the sturdy cabin walls that "keep out driving rain or freeze."  For those hours, nothing can spoil their happiness, "even Cancer, who squats on our stoop, / flipping his gold coin in lazy arcs."  At the close of "Cozy," as the couple drives home from their respite, Cancer rides with them, sitting between them "as he hums and nods / pleasantly--first to you, then to me, // one hand lightly resting on each near thigh."  The author weaves this threatening image of Cancer as an ever-present entity throughout the poems that follow.

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Man's 4th Best Hospital

Shem, Samuel

Last Updated: Feb-28-2020
Annotated by:
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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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 Edge of Every Day

Sardy, Marin

Last Updated: Jan-25-2020
Annotated by:
Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The Edge of Every Day is the memoir of a woman who comes from a “multiplex” family, in which schizophrenia is manifested in successive generations.  

The book consists of a series of essays.  Some, on topics ranging from gymnastics to building altars, were first published independently and do not appear (at least at first glance) to be linked. The choppy effect this produces speaks to the disorganized thinking that psychotic persons experience.  Other essays propel the tragic narrative of family members slipping into psychosis. At the age of ten, the author Marin Sardy, watches as the “shapeless thief” of schizophrenia steals her mother’s personality away.  Later, as she reaches her thirties, she witnesses her younger brother succumb to an even more pernicious illness.   

Despite Sardy’s mother’s conspicuous symptoms, (she advises her daughter to move to Pluto and informs her that her father has been swept away in a tsunami and replaced by another man), she functions just well enough to avoid being compelled to accept treatment. Thus, no one can stop her from going through a large inheritance and becoming destitute.  

Sardy’s brother Tom suffers his first psychotic break in his 20’s and then rapidly deteriorates.  He repeatedly “cheeks” his meds and falls through the cracks of Anchorage’s mental health system. The author and her family scour the streets, hoping to lure him inside for a shower or hot meal. As the weather worsens, they can only hope he will land in prison if it means not being exposed to the Alaskan elements.  Ultimately, the young man, who once sailed through college with A’s, commits suicide in the bathroom of a psychiatric facility. 

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Marrow: A Love Story

Lesser, Elizabeth

Last Updated: Sep-25-2019
Annotated by:
Burke, Katherine

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Elizabeth (Liz) Lesser receives a call from her sister Maggie, telling her that she has had a relapse of lymphoma. Maggie’s best chance of survival is a bone marrow transplant; of the three other Lesser sisters, Liz is Maggie’s perfect match. In an effort to bolster the stem cells’ chance to be successfully grown, harvested, and transplanted, Maggie and Liz embark on a process to do a “soul marrow transplant;” with the help of a therapist and through many difficult conversations, the sisters resolve sibling rivalries, explore their family history, and forgive each other for old assumptions and judgments. Through the journey they learn to live with vulnerability and authenticity, and as the poet Rumi writes, meet each other in the field “beyond ideas of wrongdoing and rightdoing.”  

Eventually, Maggie’s body begins to succumb to the cancer, and the entire family prepares for her inevitable death. Maggie, an artist who works with dried and pressed botanicals, strives to complete a formidable exhibition entitled “Gone to Seed,” an exploration of life and mortality. Liz seeks forgiveness and reconciliation with their other two sisters. Finally, Maggie and her family wrestle with the decision to end standard treatment, begin palliative care, and consider physician aid in dying.




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The Genius of Marian

Fitch, Anna; White, Banker

Last Updated: Sep-16-2019
Annotated by:
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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Annotated by:
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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The Farewell

Wang, Lulu

Last Updated: Aug-19-2019
Annotated by:
Jiang, Joshua

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

In The Farewell, we follow Billi, a young Asian-American woman, as she takes an unplanned trip from New York to Changchun, China, to visit her grandmother—perhaps for the last time. Billi has just found out that her grandmother (Nai Nai) has lung cancer, stage IV. The doctor gives her three months to live. As troubling as such a diagnosis already is, the situation is further complicated by the family’s choice to lie about the truth of Nai Nai’s illness to her. Now, Billi’s family gathers to see Nai Nai under the pretense of a wedding, but the festivities can barely conceal a heartfelt and heart-wrenching struggle over familial responsibility, filial piety, and whether Nai Nai deserves to know.

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