Showing 31 - 40 of 287 annotations tagged with the keyword "Chronic Illness/Chronic Disease"

The Wound Dresser

Coulehan, Jack

Last Updated: Nov-23-2016
Annotated by:
Shafer, Audrey

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

The collection is prefaced and named for a poem by Walt Whitman, The Wound Dresser, annotated in this database by Jack Coulehan. In “On Reading Walt Whitman’s ‘The Wound Dresser’” Coulehan sees Whitman as a nurse tending the Civil War wounded, and, while using some of the words and language of Whitman’s poem, imagines himself moving forward in that created space of caring for patients: “You remain / tinkering at your soldier’s side, as I step / to the next cot and the cot after that.” (p. ix) The poem introduces us to all the ‘cots’ of the book – where we step from patient to patient, through history and geography, and through the journey of medical training.   The book is comprised of 4 sections without overt explanation, although there are 4 pages of Notes at the end of the book with information about select individual poems. In general, the themes of the sections can be described as: 1.) clinical care of individual patients and medical training; 2.) reflections on historical medical cases, reported anecdotes or past literary references; 3.) meditations on geographically distinct episodes – either places of travel or news items; and 4.) family memoir, personal history and the passage of time.   Many of the poems have been previously published and a few are revised from an earlier chapbook. Notable among the latter is “McGonigle’s Foot” (pp 42-3) from section 2, wherein an event in Philadelphia, 1862 – well after the successful public demonstration of anesthesia was reported and the practice widely disseminated, a drunk Irishman was deemed unworthy of receiving an anesthetic. Although it is easy to look back and critique past prejudices, Coulehan’s poem teaches us to examine current prejudices, bias and discrimination in the provision of healthcare choices, pain relief and access to care.   There are many gems in these 72 poems. Coulehan has an acute sensibility about the variety of human conditions he has the privilege to encounter in medical training and clinical practice. However, one of the standouts for me was “Cesium 137” based on a news report of children finding an abandoned radiotherapy source (cesium) in Goiania Brazil, playing with the glowing find and suffering acute radiation poisoning. He writes: “the cairn of their small lives / burst open…their bodies vacillate and weaken / hour by hour, consumed by innocence / and radiant desire.” (p. 68).   Following another poem inspired by Whitman, Coulehan concludes the collection with a sonnet “Retrospective.” He chronicles a 40-year career along with physical aging, memories of medical training “etched in myelin,” and the search for connection across that span of career including, “those he hurt, the woman / he killed with morphine, more than a few he saved.” Ultimately, he relies on hope with fitting understatement: “His ally, hope, will have to do.” (p. 97)

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The Sick Child

Munch, Edvard

Last Updated: Nov-08-2016
Annotated by:
Bertman, Sandra

Primary Category: Visual Arts / Painting/Drawing

Genre: Painting

Summary:

In this painting, Edvard Munch shows, as the center of attention, a stricken young girl, propped on a thick white pillow, covered with a heavy blanket, at the end of her short life. A grieving companion sits next to her, her head so deeply bowed that we can only see the top of her head, not her features. The companion is so overcome with grief that she can neither hold her head up, nor look at the dying girl. Only the young girl's haunting profile is visible, as she looks steadily toward a dark ominous drape, perhaps representing the unknown or the mystery of death. Her reddish hair appears thin, damp, and uncombed against the pillow.The two figures make contact by holding hands for comfort. The artist omits the details of fingers, and just indicates a simple connected shape for both hands. Striving for only simplified and essential forms, Munch enhanced each surface by impassioned brushstrokes, nuanced colors, and thick layers of impasto paint.

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Tithonus

Tennyson, Alfred

Last Updated: Jul-28-2016
Annotated by:
Clark, Mark

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

Tithonus” is a dramatic monologue that imagines the once handsome, magnificent Trojan prince to be well-advanced in an unfortunate state brought about by negligent gods and his own lack of foresight.  Exultant over the blessings of his youth, he’d asked Aurora, goddess of the dawn, for eternal life, and she had obtained Zeus’s permission to grant the request.  But Tithonus had failed to ask for eternal youth with his immortality—and neither Aurora nor Zeus had managed to recognize that this feature of the request might be important—so that Tithonus spends eternity growing increasingly decrepit.  In Tennyson’s poem, Tithonus addresses Aurora, hoping he might persuade her to reassign him his mortal status and allow him to die.

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Deafening

Itani, Frances

Last Updated: Jul-24-2016
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Born in 1894, Grania becomes deaf following scarlet fever at the age of two. Her mother never quite recovers from misplaced guilt over this outcome and is withdrawn. But Grania is well loved by the whole family, who run a hotel in a small town. Her older sister and their Irish-born grandmother see the child's intelligence and find ways to communicate with her by signs and words; they urge the parents to send her to a special school.By age nine, Grania is sent to the famous School for the Deaf in Belleville Ontario, founded by Alexander Graham Bell. Although the school is only a short distance from her home on the north shore of Lake Ontario, the child is not allowed to return for nine long months. At first she is overwhelmed with homesickness, but soon she finds kindred spirits among the other students and teachers and adapts to the life of the institution.

By 1915, her studies complete, Grania works at the school. There, she meets her future husband, Jim, a hearing man who is assistant to the town doctor. They marry, but only two weeks later, Jim leaves to serve as a stretcher bearer in the war in Europe. Fear and death haunt the people at home and abroad for years. Jim writes what little he is allowed of the horror and danger around him, always promising to return. Grania waits and writes too, slowly growing hopeless and angry, as devastating telegrams arrive one after the other.Her sister copes with the return of a grievously disfigured husband, wounded more in mind than in body. In late 1918, Grania falls ill in the influenza epidemic and is delirious for weeks. When she recovers, frail and bald, she learns of the loss of her beloved grandmother who died of the fever caught by nursing her. At the same moment she hears of the war's end and begins to believe again in hope.

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We Are Not Ourselves

Thomas, Matthew

Last Updated: Jun-20-2016
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Fiction

Genre: Novel

Summary:

In 1951, Eileen Tumulty, the novel’s main character, was nine years old and living with her Irish immigrant parents in the Woodside section of Queens, New York. The novel follows Eileen straight through the next 60 years, but concentrates on the years covering the time of her husband’s Alzheimer’s disease.    

Eileen was forced to learn how to manage a household at a very young age when first her mother was kept in a hospital for 8 months after a hysterectomy, and then again when her mother became incapacitated by alcoholism. Eileen had reason to think this life was her destiny until she accompanied her father to a better part of Queens. There she saw “places…that contained more happiness than ordinary places did.” She concluded, “unless you knew that such places existed, you might be content to stay where you were.” (pp. 15-16) Eileen’s ambition was ignited. While continuing to manage the household and care for her mother, she does well in school, becomes a nurse, and eventually moves up the nursing management at various hospitals.  

Eileen’s ambitions encompassed ideas on her eventual mate. She chooses Ed Leary despite hoping for someone who was not quite so Irish and not quite so much of the same place. Ed was a promising neuroscience graduate student who she thought could be a high achiever with the right motivation: “If there was anything she could help him with, it was thinking big.” (p. 97) Her motivation was not enough and neither were the many offers he received from life science companies. He became a professor at a local community college. He had a passion for teaching students who attend community colleges and he could never see himself anywhere else—for love or money. Ed’s intransigence frustrated Eileen, but she accepted it and plowed ahead. She studied the possible ways of escaping the old neighborhood and also delivered a son she thought she’d never have after years of futile efforts.  

It doesn’t go smoothly. While she is getting surer of where they would go, Ed begins to exhibit disconcerting behaviors. For them to live in Bronxville, Eileen will have to accept a house that needs a lot of money and attention to rehabilitate. The remainder of the story is about how Eileen simultaneously manages Ed’s rapid deterioration from what eventually is diagnosed as Alzheimer’s disease, her job requirements, and a son progressing from adolescence through college.  

We Are Not Ourselves
touches on many of the aspects involved in prolonged illness including the daily struggles managing the care of someone with progressive dementia, complexities of health care delivery systems, frustrations with byzantine health care coverage, and threats to relationships among the individual family members with one another, and the grace that can manifest during the bleakest moments. The author does not dwell on all these issues, but gives them enough attention so that their effects will be recognizable to many readers who have experienced them. In doing so, he was able to draw from his own experiences with his father who was stricken with early onset Alzheimer’s disease.

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A Little Life

Yanagihara, Hanya

Last Updated: May-17-2016
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Fiction

Genre: Novel

Summary:

After first meeting as college roommates, Jude, Willem, JB, and Malcolm make their way through college and then onto New York City to pursue career interests. We follow them through the subsequent decades as Jude becomes a highly effective attorney, Willem a famous actor, JB an acclaimed artist, and Malcolm a prize-winning architect.  

What starts as a cluster of four eventually separates into an orbit of Willem, JB, and Malcolm around Jude at the center. The gravitational force pulling the three others towards Jude is the fidelity that can form among college roommates and a love that has bonded them together even more. But, there is also a strong sense among the three that Jude needs them for both physical and emotional support. At first, and for a good long time, it’s just a sense, but they later come to learn that their intuitions are right, that Jude does indeed need them and why. Over the years covered in the novel, a second orbit forms around Jude comprising a surgeon-cum-close friend, adoptive parents, a work colleague, and a neighbor. They, too, know Jude needs them, but only learn why late into their relationships. Until then, they are alternatively and often simultaneously worried, angry, flummoxed, and stymied about what’s at the root of his ambulatory limitations and severe leg pains, and why he cuts himself with terrifying frequency.  

Through a fractured narrative sprinkled with artfully-constructed subliminal hints, Yanagihara reveals Jude’s life before he arrived at college. She tells of Jude’s beginnings as a foundling taken in at a monastery. This hopeful start for Jude, however, becomes a childhood and adolescence of unrelenting, horrific, sexual assault and torture—when at the monastery, when on the road after being kidnapped by a monastery brother, when in protective custody, and even when he is able to escape. He arrives at college bearing the psychological and physical consequences of these experiences, but not openly displayed to a degree that yields more than a few hints of a traumatic past. With the support of the people surrounding him in  his adult life, he is able to become a highly accomplished attorney, and to achieve some measure of ease and happiness from time to time. The support he receives, however, is not enough to protect him from the consequences of further psychological and physical assaults, including his self-mutilation practices, and tragic losses. Ultimately, Jude engineers his own final tragedy.
 

Some of the people left behind suffer from more than Jude’s loss. His friend the surgeon wonders whether he enabled Jude’s self-cutting by always patching him up and never committing him to an inpatient psychiatric unit. Jude’s adoptive father relives the loss of his first son at a very young age to a rare, degenerative, neurological disease. Nearly all the figures in this novel experience suffering in some form or another, but this is more the story of Jude; how the people around him tried to get him past the horrors of his childhood and adolescence, but eventually and sadly to no avail. 

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The Heart

de Kerangal, Maylis

Last Updated: Apr-25-2016

Primary Category: Literature / Fiction

Genre: Novel

Summary:

The story of The Heart is a simple, linear structure.  A car accident renders a young Frenchman, Simon, brain-dead. A medical team proposes harvesting organs, and his parents, after some turmoil, agree. That’s the first half of the book, the provenance of this specific heart. The second half describes its delivery for transplantation. Administrators find recipients, one of them a woman in Paris. Simon’s heart is transported there by plane and sewn into her chest. All this in 24 hours.  
            
The narration is complex, with flashbacks, overlapping times, and literary art that is compelling. There are 28 sections to the story but without numbers or chapter headings, and these are often broken up into half a dozen shorter sections. We have an impression of stroboscopic flashes on the action, with high intensity focus. These create a mosaic that we assemble into dramatic pictures. Even major characters arrive without names, and we soon figure them out.  
 

Simon.  He’s called the donor, although he had no choice in the matter. At 19 years of age he’s trying to find a path in life.  A Maori tattoo is a symbol for that search. He has a girlfriend, Juliette. He fades away as a character (except in others’ memories) and his heart takes center stage.  

Marianne and Sean, Simon’s parents.  Her emotions, as we would expect, range widely, especially during discussion of whether Simon’s organs can be transplanted. Father Sean has a Polynesian origin and cultural heritage.


Pierre Révol, Thomas Rémige, and Cordélia Owl are respectively the ICU physician, nurse, and the transplant coordinator. These are vividly drawn, with unusual qualities. Skilled professionals, they are the team the supplies the heart.  

Marthe Carrare, Claire Méjan, and Virgilio Breva are a national administrator, the recipient, and a surgeon. Described in memorable language, they are the receiving team.              

The characters’ names give hints of de Kerangal’s range. S
ince the 1789 Revolution Marianne has been a well-known French national symbol for common people and democracy, but Virgilio Breva is from Italy and Cordélia (recalling King Lear) Owl (as in wise?) has a grandmother from Bristol, England. We learn of personal habits regarding tobacco, peyote, sex, and singing. Medicine is part of a larger world of people of many sorts.              

Even minor characters, such as Simon’s girlfriend Juliette and other medical personnel are touching and memorable.
             

These characters animate the story with their passion, mystery, even heroism. While we don’t know the final outcome of the implanted heart, the text shows the professionalism of the medical team, the French national system that evidently works, sensitive care of patients and families, and in the last pages, rituals of affirmation for medical art and for patients.
             

There is richness in de Kerangal’s style. At times it is direct, reflecting the thoughts of characters. At times it is ornate, even baroque. She uses many images and metaphors, often with large, epic qualities. A very long sentence about the over-wrought parents describes them as “alone in the world, and exhaustion breaks over them like a tidal wave” (p. 141).  The style uses many similes, often with dramatic and unexpected comparisons. There are references to geology, astronomy, even American TV hospital drama. The style is at times lyric…we might say “operatic.”  One page about Cordélia is very, very funny.
        
  
In a different tone, the details of medicine, law, and ethics are carefully presented, and visual imagery puts us in the hospital rooms, the OR, and crowded streets around a soccer game. Throughout it appears that translator Sam Taylor has done an admirable job. 
             

The text invites us to consider large visions of wholeness. All the major characters seek some comprehensive unity to their lives, and they avoid orthodoxies such as religion, patriotism, and economic gain. Sean has his Polynesian heritage and boat-building passion, which he has shared with Simon. Cordélia, at 25, is an excellent nurse, wise beyond her years in some ways, but is as dazzled by a man as any teenaged girl. Nurse Rémige has his master’s in philosophy, loves the song of rare birds, and is, himself, a serious singer.  

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The Death of Cancer

DeVita, Vincent

Last Updated: Feb-04-2016
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The book offers a detailed account by one of the nation’s leading cancer researchers of developments in chemotherapy over the past several decades, as well as the recent history of surgical and radiation treatments in the “war on cancer”—a term he resisted at first but finally embraced with full understanding of its implications.  The narrative touches on many of the writer’s own struggles over economic, political, and moral implications of what a NYT reviewer described as a “take-no-prisoners” approach to cure.  He also includes stories about disagreements with other researchers that give some insight into the acrimony that is part of high-stakes science.  At the NIH and later as head of the National Cancer Institute, DeVita faced many decisions about distribution of resources, how much to put patients at risk, and whom to include in clinical trials.  He provides his own point of view on those controversies frankly.  Not much mention is made of the causes of cancer, of nutritional or other complementary approaches, or the environmental factors in the spread of cancer. The strong focus on the book is on the development of chemotherapeutic treatments that have succeeded in raising survival rates, though few current statistics are cited.

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Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Kozol tells a multilayered story about himself and his father, a distinguished physician who becomes increasingly demented by Alzheimer’s disease, starting at age 88. A neurologist, Dr. Harry Kozol is able to diagnose with great specificity his own disease.     
          
Son Kozol describes his father’s initial symptoms and the slow decline, a direction that is sadly and fatefully, clear. The son goes on walks with him, describes their conversations, arranges for paid companions, and puzzles about what must be “a life beneath the life” of his progressively inarticulate father.
           

Over the 14 years of this illness, there are some medical mishaps—including problems in continuity of care—depletion of the family’s money, and Jonathan’s hesitation to use a DNR (Do Not Resuscitate) order for his father or for his aging mother. He writes of his doubts, uncertainties, and mixed emotions. When his father is actively dying, Kozol dawdles elsewhere with lists and papers “obsessively.” He understands this, in retrospect, as denial. Nevertheless he arrives at the hospital and places his ear on his father’s chest, hearing breaths come slower and slower until death. Dr. Kozol dies in 2008 at the age of 102.
           

Alternating with this story are long passages about Dr. Kozol’s professional life, including his work with Eugene O’Neill and family, also Patty Hearst and Albert DeSalvo (“The Boston Strangler”). For the latter two, he is an expert witness in court cases. These passages illustrate his many skills, tenacity, and ideals.

A 25-page Epilogue written a half a dozen years later casts a different light on the father-son relationship. While the bulk of the book shows a loving, respectful relationship, the Epilogue describes tensions and disagreements between the two from Jonathan’s childhood to later years. The father criticizes what he perceives as failures, lack of ambition, poor choices, and the like. Kozol describes his own illustrious career, often in directions his father disapproves. In later years, however, Kozol accepts some of his father’s advice and understands their status more as equals. In another seven years, however, Dr. Kozol’s mind starts its difficult path, and the son becomes the caregiver to the father.  

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The Not-Dead and the Saved

Clanchy, Kate

Last Updated: Nov-23-2015
Annotated by:
Miksanek, Tony

Primary Category: Literature / Fiction

Genre: Short Story

Summary:

Two individuals share a struggle that is grueling, depressing, and whose outcome is probably preordained. The Mother (divorced, constantly tired, and fearful of sickness) is "not a good choice for the parent of a chronic invalid" (p. 168). The Son (smallish, clever, and born with some kind of tumor) has previously had an organ transplant (most likely kidney).

Their trek through the realm of sickness unfurls in seven scenes - all hospital wards and finally Hospice. First, the Son is an adolescent in a pediatric ward where the Machine (presumably renal dialysis) prevents his death. There he spots a baby that he dubs a "Not-Dead." She has multiple birth defects due to a chromosomal abnormality and is kept alive by technology. He intuits that while not dead, the baby is not "properly alive" either. He muses about his own status. His mother is always bedside, propping up his spirits.

Next he is in the ICU and then transferred to a medical floor. He receives a blood transfusion after disconnecting the Machine in a likely suicide attempt. Sometime later, he is back in the pediatric ward after receiving an organ transplant. The Son gets admitted to the Cardio-Respiratory unit for a severe infection. In and out of hospitals, he enrolls in college but quits. After getting married, he joins a commune of survivors of medical illnesses known as "The Saved." This collective lives on a farm and members avoid any contact with family.

The Son's health further deteriorates. He is hospitalized in terminal condition. By this time, he has his own child, a 14-month-old boy named Jaybird. In the oncology ward, doctors diagnose three tumors in the Son's brain but he refuses any treatment (surgery, radiation, or chemotherapy). He is moved to Hospice. His absent Father comes to visit and comfort him. When the Son dies, it is the Mother who is alone with him. The Son's wife, Father, Jaybird, and members of The Saved commune are all asleep in the Day Room. Only after the Son dies are the names of the Mother and the Son revealed: Julia and Jonathon.

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