Showing 1 - 10 of 312 annotations tagged with the keyword "Chronic Illness/Chronic Disease"

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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Pain Studies

Olstein, Lisa

Last Updated: Jun-10-2020

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

“All pain is simple” reads the opening sentence of this unusual and striking book. The next sentence reads, “And all pain is complex.” These two sentences foreshadow many puzzles to come: how do we live between chaos and control? Why can’t doctors figure migraines out? Why don’t they agree on a treatment for a particular patient? Olstein is a poet and long-term migraine sufferer. Her book offers many observations about pain, and her attempts to define it, describe it, and plumb its nature through language. There is no linear narrative or argument, rather 38 very brief chapters—usually three to five pages—and many of these could be read in a different order. 

Olstein uses the terms “studies” and “research” for her efforts to capture pain, to explain it, and to understand the cause(s) of her disease. Her mother had migraines; women have three times the rate of men; she had a childhood head injury. Do any of these factors explain her disease? No. And what treatments work? She lists some 50 drugs/supplements/activities she has tried to deal with her illness. None of these have worked in a definitive way. Further, she lists some 30 side-effects she has experienced from these various treatments (pp. 74-75). She has had multiple migraines, one lasting three months, but she also says drugs keep pain at bay: “mostly the medication does work” (p 90).

Some disparate figures help her focus her inquiry: Joan of Arc (possibly a migraine sufferer), the TV character Dr. Gregory House (racked with chronic pain, he is an opioid addict), Virginia Woolf, and Hildegard of Bingen (possibly a migraine sufferer). Also ancient writers such as Lucretius, Pliny the Elder, and Antiphon the Sophist, and contemporaries from different fields, such as mathematics and neurology. Also she refers to poems by Emily Dickinson, Elizabeth Bishop, and C. D. Wright, as well as to an article on gendered literature by Siri Hustvedt. 

Largely written during a writing residency, these are incisive notes plus associations as she plumbs not only her illness but also her responses—as poet, as thinker, as searcher for healing—to the bizarre, long, difficult path of her migraines. (We have only brief mentions of her personal and family life.) While she refers to some scientific literature, it is more often that her insights come from artistic fields such a literature, sculpture, drama, and popular music. She writes that her work with a therapist over a dozen years has been helpful to her.

There is no conclusion…nor can there be. Her illness, treatment, and writing are all works in progress. Patients are different; doctors are different; science evolves. In their many forms and presentations, migraines are mysterious and complex, as this book creatively and powerfully shows. Olstein writes, “The beauty, the love, is in what we perceive” (p. 144). We may take this observation as the guiding principle for the book.   

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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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Annotated by:
Galbo, 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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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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Tree, Broken Tree

Mortimer, Dylan

Last Updated: Feb-03-2020
Annotated by:
Lam, MD, Gretl

Primary Category: Visual Arts / Visual Arts

Genre: Multimedia

Summary:

A tree, colored in pink glitter and outlined in red, stands alone. Two of the main branches are cleaved apart, and green glitter oozes from the wound. This does not look like normal tree sap; the yellow-green color is purulent, and the glitter gives it a toxic glowing effect. Two of the three branches droop weakly towards the ground.  The tree is sickly, possibly dying.  

Because the tree is mounted on a white background, with the tips of branches curling lightly off the panel, the piece also recalls a scientific specimen mounted on display. Those who are familiar with lung anatomy will note how the tree trunk recalls the trachea, and the branches recall bronchi. The pink and red coloring reinforces the idea that this isn’t merely a tree, but also lung tissue.

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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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From Nothing

Krugovoy Silver, Anya

Last Updated: Jan-06-2020
Annotated by:
Davis, Cortney

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

There are 48 poems in this volume (the author's third full-length collection), divided into three sections.  The author's first book, “The Ninety-Third Name of God” introduced us to her family and especially to her diagnosis--inflammatory breast cancer--the disease discovered in 2004 during her pregnancy, the disease that claimed her life in August, 2018 when she was forty-nine-years old.

In her second collection, “I Watched You Disappear”  Silver's poems invited us to accompany her on her journey through treatment, anger, despair, determination, and faith. This third collection (her penultimate) continues the author's beautifully written illness narrative, again presenting moments of joy and of despair, and always of hope.

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Annotated by:
Davis, Cortney

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

There are 46 poems in this volume (the author's second full-length collection), divided into four sections.  The author's first book, "The Ninety-Third Name of God" , introduced us to her family and especially to her diagnosis--inflammatory breast cancer--the disease discovered in 2004 during her pregnancy, the disease that claimed that claimed her life in August, 2018, when she was forty-nine-years old.  This second collection continues Silver's illness narrative, poems that might serve as a journal of her journey through treatment, anger, despair, determination, and faith.

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Summary:

This illuminating and disturbing book explores how various forms of white supremacy became expressed in policies, laws, and elected officials, such as Donald Trump. Physician and sociologist Metzl details social changes in Missouri, Tennessee, and Kansas, where white Americans backed changes that, ironically, dramatically harmed them with gun suicides, school dropouts, worse healthcare, and shorter life spans. For Metzl, “Whiteness” refers not to skin color but to a political and economic system of white privilege.

Metzl's thesis that: “Trump supporters were willing to put their lives on the line in support of their political beliefs” was, in fact, a sort of “self-sabotage” (pp. 5-6). While a conservative political movement fostered white racial resentment, largely in lower-income communities, the mainstream GOP did its part by crafting policies against the Affordable Care Act, higher taxes, and restrictions on guns. An atmosphere of polarization and political stasis grew. Metzl writes: “Compromise, in many ways, coded as treason” (p. 11).  

Metzl focuses on the examples of Missouri, Tennessee, and Kansas to “suggest how the racial system of American fails everyone” (pp. 16, 20). He visits each state, leading focus groups, interviewing formally and informally, reading newspapers, and inductively formulating concepts that seem to explain the nonsensical behavior of rejecting helpful programs. For example, because “risk” in Missouri has become a code name for possible attacks by black people, white people buy guns, especially when restrictions are removed. Many white men feel that a gun (or many guns) restores their privilege, but suicide of white males, often low-income, goes up. Metzl’s statistics and charts show contrasts with other states with stricter laws and lower suicide rates. He calls for preventive medicine to lower such deaths.  

For Tennessee, the Affordable Care Act offered many benefits to poor or middle-income people, but Republicans (and especially Trump) attacked it as big government over-reach, socialism, exorbitant cost, a program that would help minority people, for example “welfare queens.” “Cost” became a proxy for the “we don’t like it,” even when the economics would be favorable for good healthcare for all. Blacks were generally in favor of ACA, but white blue-collar men swore by their independence and autonomy. Neighboring Kentucky accepted ACA, and ten graphs included in the book clearly chart the better outcomes for Kentucky in such areas as insurance coverage, death rates, and seeing a doctor.  

Metzl returns to Kansas, where he grew up and recalls the pride Kansans had in their state. Republican Governor Sam Brownback enacted massive tax cuts with large reductions to state services and school funding, an “experiment” in “epic defunding.” The GOP, Tea Party, Koch brothers, and “trickle down” theories all played a part in benefiting the wealthy financially, while minority and lower-income groups paid more. Infrastructure, such as roads, suffered. Untested charter schools collected wealthy white students, while public schools plunged in funding, test scores, and graduation rates (see 17 graphs). Since education is a predictor of health, there are and will be long-term costs to Kansans, especially for minority groups.  

Metzl attacks the “Castle Doctrine” (“a man’s home is…”) as a symbol of narcissism, individualism, and as a risk for all citizens when social structures are abandoned. He closes with some hopeful examples of social change for the better.

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