Showing 1 - 10 of 658 annotations tagged with the keyword "Disease and Health"

Annotated by:
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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Annotated by:
Shafer, Audrey

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Mallory Smith died of complications following a double-lung transplant for cystic fibrosis (CF). She was twenty-five years old and kept an extensive journal on her computer for 10 years. Salt in My Soul: An Unfinished Life is her memoir, edited by her mother, Diane Shader Smith, from the 2,500 pages of notes, observations and reflections which Mallory Smith wrote. The title refers to the intimate relationship of salt imbalance in cystic fibrosis, and the fact that Mallory felt her most well while swimming in the sea. Diagnosed at age three, she spent much of her days and nights treating the disease with medication, nutrition, chest percussive treatments, breathing treatments, adequate sleep, and aggressive treatment of infections. Unfortunately, while still a child her lungs were colonized with B. cepacia, a resistant bacteria ‘superbug’ which makes transplantation highly risky and hence leads to most centers to not accept CF patients onto their wait lists. Ultimately, University of Pittsburgh does accept Mallory as a transplant candidate, although her health insurance puts up every road block possible to her receiving care. 

Mallory Smith was extraordinarily accomplished – she graduated from Stanford University Phi Beta Kappa, and became an editor and freelance writer. She was also deeply engaged with life and others; she was grateful for her loving, devoted family, and she developed close, fierce friendships within the CF community, among classmates, and eventually, she fell in love. 

She resists being called ‘an inspiration.’ She writes: “I’m not an inspiration. I’m just a person, grounded in compassion, striving to achieve empathy and wanting to make my way with goodness and grace.” (p. 171) She marvels at the miracle of life: “Our existence is the result of stars exploding, solar systems forming. Our Earth having an environment hospitable to life, and then, finally, millions of highly improvable events accumulating over millions of years to bring us, a capable and conscious bag of stardust, to the here and now.” (p 111) Her memoir is a story of living and dying from CF, but it is also an inside look at the brief life of young gifted writer.

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Annotated by:
Shafer, Audrey

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Sunita Puri, a palliative care attending physician, educates and illuminates the reader about how conversations about end of life goals can improve quality of life, not just quality of dying, in her memoir, That Good Night: Life and Medicine in the Eleventh Hour. Thirteen chapters are grouped in three parts: Between Two Dark Skies, The Unlearning and Infinity in a Seashell. The arc of the book follows Puri as she is raised by her anesthesiologist mother and engineer father – both immigrants from India – Puri’s decision to enter medical school, her choice of internal medicine residency followed by a palliative care fellowship in northern California and her return to practice in southern California where her parents and brother live. Besides learning about the process of becoming a palliative care physician, the reader also learns of Puri’s family’s deep ties to spirituality and faith, the importance of family and extended family, and her family’s cultural practices.

Puri writes extensively about patients and their families, as well as her mentors and colleagues. She plans and rehearses the difficult conversations she will have with patients in the same way a proceduralist plans and prepares for an intervention. She provides extensive quotes from conversations and analyzes where conversations go awry and how she decides whether to proceed down a planned path or improvise based on the language and body language of her patients and their family members. We visit patients in clinic, in hospital, and at home, and at all stages of Puri’s training and initial practice. Some of the most charged conversations are with colleagues, who, for example, ask for a palliative care consultation but want to limit that conversation to a single focus, such as pain management. We also learn of the differences between palliative care and hospice, and the particularly fraught associations many have with the latter term. She feels insulted when patients or families vent by calling her names such as “Grim Reaper” or “human killer” (p. 232), but understands that such words mean that more education is needed to help people understand what a palliative care physician can do. 

As a mediator of extremely difficult conversations, where emotions such as shame, guilt, fear, helplessness and anger can swirl with love and gratitude, Puri finds the grace to acknowledge that all such emotions are part of the feelings of loss and impending grief, and to beautifully render her reflections on these intimacies: “Yet although I am seeing a patient because I have agreed that they are approaching death, if I do my job well, what I actually encounter is the full force of their lives.” (p. 206) Having met many dying people she notes: “Dying hasn’t bestowed upon them the meaning of life or turned them into embodiments of enlightenment; dying is simply a continuation of living this messy, temporary life, humanly and imperfectly.” (pp 221-2)
 

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Survivors

Pratt, Arthur

Last Updated: Jul-19-2019
Annotated by:
Thomas, Shawn

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

For much of the western world, the Ebola crisis came and went without much fanfare. Perhaps we were jolted by the initial news stories, taken aback by the images from affected areas, and slightly unnerved by the travel advisories as we entered security lines at the airport. But for the most part, the Ebola outbreak was an abstract crisis affecting people on the other side of the world, multiple continents away. The closest that most Americans came to Ebola was to hear in the news about the four diagnosed cases in Texas and New York City. It is safe to say that most of the world remains unaware of the depths of this crisis in the West African hotspot countries of Liberia, Sierra Leone, New Guinea, and Nigeria.  

Arthur Pratt is a Sierra Leonian pastor and filmmaker, and he witnessed firsthand the invisible enemy that threatened to destroy his country, the communities, and the families that lived there. Despite the human cost that this disease extracted from the West African people, Pratt was inspired by how the people in Sierra Leone rose up to defend their country from a viral invasion that was attacking “the fabric of what it means to be African.” He felt it necessary to tell the world the story of Sierra Leone’s unsung heroes, and so he created a documentary titled Survivors, which focused on the work done by the ambulance drivers and nurses, interwoven with personal stories of children, mothers, fathers, and communities touched by the disease. Survivors gets up close and personal to the 21-month battle against Ebola in West Africa, and shows how the common people of Sierra Leone risked everything to come together and fight back against an existential threat.

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Summary:

A psychiatrist and PTSD (post-traumatic stress disorder) specialist, Dr. Shaili Jain has written a book on PTSD and its many angles, from diagnosis to treatment to a larger perspective on cultural and historic influences on the development of traumatic stress. She weaves the story of her own family’s experience with the Partition of India and Pakistan in 1947, particularly its effect on her father and grandparents, as a way to consider the effect of trauma on family, but also how those traumas become ‘unspeakable.’  

A brief but effective introduction outlines the seven parts of the book:
1. Discovering Traumatic Stress: historical perspective and the changing language to describe the effects of trauma.
2. The Brain: the physiologic and psychological underpinnings of PTSD, including effects on memory formation and retrieval.
3. The Body:  such as addiction, cardiac effects and concerns at different stages of life.
4. Quality of Life: domestic and sexual violence, socioeconomic factors.
5. Treating Traumatic Stress: programs, treatment strategies and psychopharmacology.
6. Our World on Trauma: global health, large scale tragedy, terror and war.
7. A New Era: An Ounce of Prevention: resilience, accessibility of care including early and preventative care. 

Additionally, almost 100 pages of notes, glossary, resources and an index provide an easy way to further explore, to use the book to look up specific topics, and underscore the heavily researched nature of the text.   The book is eminently readable, with numerous, well-placed stories of patient encounters and particular experiences and manifestations of PTSD.  These stories are illustrative of the concepts Jain ably explains. However, they also provide an insider’s view of what happens in the consulting room.  In the prologue, Jain describes a young Afghanistan War veteran, who has been hospitalized after a violent outbreak at a birthday party: “Josh’s PTSD was fresh, florid, and untreated…. His earlier poise caves in to reality, and his face falls to anguish.” (p. xvi) We are in the room, listening to the patient, witnessing the tears of the medical student, glimpsing the attending psychiatrist’s response, and relating to Jain, as a psychiatry chief resident, as she understands that the individual before her, even as he shows classic signs of traumatic stress, remains an individual, a person in need of care.   

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Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The Scar is a powerful, thoughtful, and moving book, part memoir about the author’s illness across some 30 years, part history of depression and its treatment and part essay to evoke cultural and personal values about sickness, suffering, health, and death. Cregan, a gifted stylist herself, draws on literature that deals with human suffering, mortality, and wisdom.  She frankly describes her sorrows and hopes, the death of her baby, her attempts to kill herself, and her survival today with many blessings.   
           
The title refers to a scar on her neck, a result of her effort to cut her throat with a piece of glass so that she would die. This attempt, in a hospital, reflects the depth of her illness and the failure of her caregivers to prevent it. Her book explores the complexity and variety of mental patients and the range of medical responses—some useful, some not—to  treat them. Writing as a survivor, she draws on her journal, hospital records, emails, interviews, and more; she is part journalist, detective, archivist, and forensic pathologist—as if doing an autopsy on the suicide she attempted.
 
Ch. 1
What Happened describes the birth and immediate death of her daughter Anna and her descent into depression and initial hospitalization.

Ch. 2
What Happened Next discusses mental hospitals and her perceptions of being a patient in one. A dramatic paragraph describes her cutting her throat (p. 51).

Ch. 3
How to Save a Life presents electroconvulsive therapy (ECT), from the jarring images of “One Flew Over the Cuckoo’s Nest” to her own experience of some 17 treatments; she reports that these helped in recovery.

Ch. 4
The Paradise of Bedlams gives a history of mental hospitals. She is hospitalized three months, “a prisoner,” in her term.

Ch. 5
Where Do the Dead Go? explores the dilemmas of the living as they mourn the deaths of people they love, including approaches from Judaism and Christianity. Mary has nightmares about her lost baby. She discusses Freud, Rilke, T. S. Eliot and others. She buries Anna’s ashes.

Ch. 6
Early Blues discusses modern attempts of science and the pharmaceutical industry to create drugs for mental illnesses, with influences from psychodynamic and biological concepts.

Ch. 7
The Promise of Prozac discusses that famous (notorious?) drug; she takes it on and off while working on her PhD, then other drugs as they became available.

Ch. 8
No Feeling Is Final sums up many themes.  She’s in her late 30s, remarried, and trying to conceive. After IVF, she’s pregnant. Baby Luke is born. She understands that the scar on her neck has an analogue with Odysseus’ scar on his leg: a symbol of survival through hard, even desperate times, for her a “double trauma: the loss of my child, the loss of myself”  (p. 243).  

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Annotated by:
Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Biography

Summary:

In That Jealous Demon, My Wretched Health (subtitled “Disease, Death and Composers”), Jonathan Noble, a retired surgeon gives us the medical and psychiatric history of seventy classical music composers. Chapters are organized by illness, ranging from cancer to syphilis to alcoholism.  Famous composers such as Schubert and Shostakovich predominate, but many lesser-known composers, ranging from Jeremiah Clarke to Gerald Finzi, are also included.  

Mozart is one composer whose cause of death has long been the subject of controversy, and the various theories are comprehensively explored here. However, the author goes even further, developing a detailed medical case study of the composer beginning in childhood.  He examines the toll that Leopold Mozart’s exploitation took on his prodigy son’s constitution, what Wolfgang’s appearance in the surviving portraits has to say about his general health, and even whether he may have had Tourette’s Syndrome. Finally, the author ties all of this together, methodically refuting or confirming each diagnosis, offering far deeper analysis than one would expect to find in a standard biography.  

Another example, the case of Tchaikovsky, reads like a veritable whodunit. The composer’s activities during the last two months of his life are scrutinized, with the likely causes of death systematically disproven or confirmed.  

A list of composers who suffered accidental or violent deaths provides some surprises. You will learn that Lully accidentally stabbed himself with his conductor’s baton, and that Alkan may have been crushed to death by a bookcase upon pulling his Talmud off a shelf.

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Sky the Oar

Nigliazzo, Stacy

Last Updated: Oct-16-2018
Annotated by:
Davis, Cortney

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

"Sky the Oar," Stacy Nigliazzo's second full-length poetry collection, contains 52 poems in four sections. These poems are gems--and gem-like, each poem has been created by a compression of words into unique forms.  Nigliazzo's poems wander along the page, floating in white space as margins move in and out. In the three "Triptych" poems, pages 36, 46, and 61, Nigliazzo uses an article written in 2015, the report of a woman's murder, as a pale background. By choosing words to highlight, the poet creates spare poems that emerge as commentary on this crime--"Triptych III" offers only 6 highlighted words (pages 61-62). Nigliazzo has abandoned the more common narrative form--long or short lines that tell a story--and instead gives the reader hints, sign posts along the way. These poems are not meant to be read quickly. It is only by pondering them, allowing the imagination and intellect to fill in, so to speak, the white space around the words, that the impact and complexity of these stunning, impressionistic poems becomes evident. 

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Summary:

Naomi Oreskes and Erik Conway examine the successful efforts of a few scientists to jam the spokes in the wheel of science, delaying needed mitigations (e.g., regulations) to protect individuals, vulnerable populations, nations, and the earth.

The authors chose the well-known and controversial debates around second hand tobacco smoke, acid rain, the strategic defense initiative, the ozone hole, global warming, and the pesticide DDT as the substrate for their investigation. Each issue involves a large accumulation of evidence of the dangers it presents to humans. And each provoked skepticism and opposition from related industries, contrarian scientists, and anti-regulation politicians and institutes. Industry opposes regulations that could threaten their businesses. Free market ideologists do not want regulations that could threaten capitalism and accelerate a slide into socialism. 

Faced with mounting scientific evidence and general agreement amongst credible researchers, those whose interests were threatened needed a strategy to win that didn’t rely on scientific evidence. The tobacco industry led the way by hiring “a public relations firm to challenge the scientific evidence that smoking could kill you,” (p. 15) and to ensure that “scientific doubts must remain.” (p. 16) The authors drew from publicly available documents to best convey this idea:

‘Doubt is our product,’ ran the infamous memo written by one tobacco industry executive in 1969, ‘since it is the best means of competing with the ‘body of fact’ that exists in the minds of the general public.’ (p. 34)

The industry realized, however, that renowned scientists would be needed “to merchandize doubt,” (p. 33) and so they recruited some. First among them was Frederick Seitz. He was a physicist who had been involved in the atomic bomb program during World War II and later in Cold War weapons programs. He knew next to nothing about the science showing the harm of tobacco smoke. However, his time as president of the National Academy of Sciences and as president of Rockefeller University accorded him credibility on all matters of science, at least to constituencies outside of science. His attacks on the science showing the harms of tobacco smoke had a lot to do with the decades it took before governments and the public took meaningful actions.

This became the approach opponents took against of science-based initiatives they wanted to scuttle. Seitz was recruited for other campaigns, but so were other physicists with similar backgrounds to form what Oreskes and Conway call a “small network of doubt mongers.” (p. 213) They make a point that this network only threw darts—poisonous darts—at the science they targeted and never once contributed their own original research to support their opposition to any scientific findings or consensus.

Oreskes and Conway tie the motives of these scientists primarily to their fierce devotion to liberty, which then meant fighting Communism and any other forms of socialism. They suggest that some degree of curmudgeonry and contrarianism is involved as well, but they focus more on political ideologies as the primary drivers for these people:

they were working to ‘secure the blessings of liberty’…if science was being used against those blessings—in ways that challenged the freedom of free enterprise—then they would fight it as they would fight any enemy. For indeed, science was starting to show that certain kinds of liberties are not sustainable—like the liberty to pollute.” (p. 238-239)

The authors hold the news media responsible for much of what the doubt mongers accomplished, specifically faulting them for applying the “fairness doctrine”—each side of an argument will get equal time—to the point of absurdity.

it especially does not make sense to dismiss the consensus of experts if the dissenter is superannuated, disgruntled, a habitual contrarian, or in the pay of a group with an obvious ideological agenda or vested political or economic interest. Or in some cases, all of the above. (p. 272-273)

The news media, they assert, are the gatekeepers and should be able to distinguish charlatans and snake oil salesmen from legitimate scientists. In this role, they failed as far at the authors are concerned. There can be no network of doubt mongers without a news media that either can’t or won’t call them out.

In contrast, the authors give the scientists who didn’t call out the doubt mongers a more forgiving critique. For the most part, they say, scientists facing a fight will retreat to their labs and concentrate on their work—they’re discovers, not fighters. On them, “intimidation works.” (p. 265)

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Summary:

Barbara Ehrenreich wants to manage her health and all that is available to address various aspects of it. She makes clear that she will do the managing and has written this book to reflect on how she plans to do it.  Ehrenreich explains why managing her health is necessary. She puts it this way:

We would all like to live longer and healthier lives; the question is how much of our lives should be devoted to this project, when we all, or at least most of us, have other, often more consequential things to do (p. xv)  

Ehrenreich doesn’t reject the project of getting longer and healthier lives per se, but she believes that what this project requires isn’t always worth the results it produces. The time and energy needed could be put towards better ends.  

Like many other critics, Ehrenreich details how Biomedicine often comes up short on outcomes for all the time, effort, and money it requires from the people it serves. She covers the familiar territories of over diagnosis and over utilization of health care products and services, and goes further to suggest that many common medical practices are more ritualistic and humiliating than evidence-based and effective.

Unlike other critics, Ehrenreich takes on other activities directed at health outside of Biomedicine. She questions whether the physical fitness industry delivers on its promises to produce healthier lives and especially whether there is a net benefit based on the time and energy required from people who take it on. She crosses to the other side of the mind-body continuum when she next aims at the “madness of mindfulness” (p. 71).  She finds the mindfulness movement offers more hubris than solutions.  

Ehrenreich worries that the combined effects of the authority of Biomedicine, the physical fitness frenzy, and the madness of mindfulness have created a social context that treats death as something that can be avoided or at least delayed. This social context thereby implies that not actively engaging in efforts to fight off death “can now be understood as a suicide” (p. 97).

Ehrenreich offers some reasons for why these efforts to improve health and prolong life do not always produce benefits that in her view are worth pursuing to the exclusion of other activities resulting in a better life (or death). Drawing on examples from cell biology and immunology, she suggests that what is at work are disease processes too complex for the human mind to apprehend completely combined with the human impulse to  simplify, which lead to practices, procedures, and prescriptions that in the best case are ineffective and in the worst case harmful.   

At the end of the book, Ehrenreich laments the efforts health care professionals, nonprofit organizations, government agencies, and commercial entities make to push older people into commitments for “successful aging.” Those making these efforts argue “aging itself is abnormal and unacceptable” (p. 164).  This commitment requires older people to spend a lot of time in clinics, gyms, and wellness classes—“The price of survival is endless toil,” is how Ehrenreich formulates it (p. 163).  She doesn’t think this price is worth what is required of people who are supposed to benefit, and advises her friends to insist “on a nonmedical death, without the torment of heroic interventions to prolong life by a few hours or days” (p. 208).

I continue to elude unnecessary medical attention and still doggedly push myself in the gym, where, if I am no longer a star, I am at least a fixture. In addition, I retain a daily regimen of stretching, some of which might qualify as yoga. Other than that, I pretty much eat what I want and indulge my vices, from butter to wine. Life is too short to forgo these pleasures, and would be far too long without them (p. 207).

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