Showing 1 - 10 of 300 annotations tagged with the keyword "Chronic Illness/Chronic Disease"

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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Annotated by:
Davis, Cortney

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

There are 46 poems in this volume (the author's first full-length collection), divided into three parts--the poems in the second section are in memory of women who have died of inflammatory breast cancer, the same disease that claimed the life of the author in August, 2018, when she was forty-nine-years old.  Diagnosed in 2004 during her pregnancy, Anya waited until after her son Noah was born to begin cancer treatment.  These poems, published in 2010, begin in images of her domestic life and her family, move forward to her cancer diagnosis (p. 17: "Biopsy"), and progress to examine, in poems that balance beauty and pain, what it is like to live with the knowledge of early death.  This awareness imparts a crystalline honesty and urgency to every poem. 

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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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Annotated by:
Perkins, Sam

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

 In Strange Relation, Rachel Hadas, poet, teacher and classicist, recounts the years just short of a decade of her husband’s descent – retreat is the word she’d prefer – into dementia. Although no definitive diagnosis emerges for George’s “spooky condition,” frontotemporal dementia possibly with Alzheimer’s disease in the frontal lobe seems the most likely. By Hadas’s reckoning, George’s symptoms began when he was in his late fifties—relatively young for dementia. Diagnosing any form of early onset dementia is extremely difficult, especially if memory loss is not among the symptoms, as was the case with George. Hadas noticed the symptoms — his silences and growing remoteness— and ascribed them to her husband’s loss of interest in life and their marriage. She writes, “Slowly and insidiously your partner changes from the person you married into someone else.” 

The book opens in 2004, just before his diagnosis in 2005 at the age of 61. George Edwards was a successful and celebrated composer of symphonies, chamber works and art songs, as well as a professor of music at Columbia University. Through flash-backs, Hadas fills in a portrait of a happy, mutually supportive marriage of two engaged, successful artists, a life that slowly melted away as George’s disease tightened its grip. She ends with George in a long-term care residence in 2009, the year Strange Relation was published and two years before his death in 2011.  

The core of the book, intertwined with the story of George’s dementia, is Hadas’s account of the comfort she sought and gained from reading and writing prose and poetry. “This ordeal has eloquently reminded me of the sustaining power of literature,” she writes. “These gifts of the imagination,” gave her strength. “They are not sufficient, but they are damn well necessary.”

Over seven decades of reading have given Hadas a vast store of literary references to draw on. George is Mr. Dick from David Copperfield, mentally scattered, shuffling his papers; he is King Lear, losing clarity and dignity and consumed with anger and humiliation as he feels his abilities fade. Like Penelope awaiting Ulysses’ return, Hadas sees herself living with George as “neither wife nor widow,” her husband a physical presence but spiritually gone. When she reads James Merrill’s “Days of 1964,” she identifies with the poet who “has gone so long without loving that I hardly knew what I was thinking.” The poem speaks to her as it captures, “The thirst, the loneliness, the habituation to emotional deprivation that marked the way I was living.”

 A recurrent theme that many will relate to is the loneliness she feels caring for someone who, because of his condition, hardly speaks or expresses emotion. Robert Frost’s “Home Burial” reminds her how quickly friends will turn away from death and illness and “make their way back to life.” Sickness, says Flannery O’Connor, is a country “where there’s no company, where no one can follow.” She sees her life reflected in Philip Larkin’s wry poem about a couple’s estrangement, “Talking in Bed,” – the couple’s growing estrangement is “this unique distance from isolation.” Hadas finds the clarity and the company of these works a huge comfort.

There are moments of uplift, too. When her college-age son, Jonathan, and his friends propose to take George on a two-week getaway of very rustic living in Vermont, she reluctantly agrees, certain that disaster or injury will ensue. The reader is as relieved as Hadas is when all goes off without a hitch. 

A recurrent theme of the book is the importance of the language used to describe a disease and its treatment. Metaphors and similes, of course, are staples of medical caregiving – “they help us see freshly,” says Hadas; they help her step outside the moment and understand George, whom she describes as retreating into a “walled garden” or behind a “frosted window”; his disease is a bath in which he’s immersed and can never escape; it is a malignant fluid his brain is stewing in.

Equally, using the wrong metaphors and similes can cause pain and guilt. A neurologist tells Hadas that she’s feeling depressed because Hadas has moved into a “new house” and is still living out of boxes, still in transition. “Make yourself at home,” the doctor advises, “I don’t think you’ve completely moved in yet.” This only makes Hadas feel inadequate and guilty. “Let’s at least find the right kind of house,” she writes. Caring for a person with dementia, as she sees it, is not a house but a prison in which the family caregiver is the voluntary inmate, “responsible for the daily care of a warden who has mysteriously changed into a ward.” 

By the end of the memoir, George has declined to the point that Hadas can no longer care for him and has found him a residence, which raises a new host of concerns. He fails out of the first home and she finds another. She visits George regularly and experiences a new kind of tethered freedom. Her divided self, composed of the Drudge and the Poet, dusts off their apartment to reclaim it from the associations of George’s illness, hoping to rescue her memories of twenty years of happiness before his illness began to take him. “It became my home in a new and different way.”  

Each phase of her journey is accompanied by poems, twenty-nine in all, that Hadas wrote to understand herself, clarify her feelings, cope with the loss of George. Never was Robert Frost’s dictum regarding the ingredient of a successful poem— “No surprise for the writer, no surprise for the reader” —more pertinent. Along with her reading, Hadas’s poems lead her to insights that comforted and sometimes surprised her—and will do the same for the reader.   

The book ends with George’s birthday party in 2009 at the long-term care residence where he finally settled. He died shortly after the book was published in 2011.   




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Waverly Gallery

Lonergan, Kenneth

Last Updated: May-02-2019
Annotated by:
Teagarden, J. Russell

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

Genre: Theater

Summary:

The play is set between 1989 and 1991, the last two years of the life of Gladys Green, an 85 year old woman who runs a small art gallery in New York's Greenwich Village. She lives on her own near the gallery, but she is watched over by an adoring grandson (Daniel) who lives in the same building, and by a doting daughter (Ellen) and son-in-law (Howard), who live uptown from her. Gladys can’t hear very well and she has diabetes, but otherwise she is doing well enough. 

From this point we watch Gladys gradually lose some of her mental capabilities, mostly memory. Our attention is directed to how the family responds and comes to grips with her deterioration. Aware of Gladys’ past before she opened her gallery as an activist lawyer with a frenetic lifestyle, Daniel lays out a strategy the family adopts: “she’s got to have something to do.” Their chief tactic is to keep Gladys in the gallery where she could mix with people, keying off what she said keeps her sane: “Everyone needs someone to talk to, otherwise you’d just go nutty. I love to talk to people.” 
 

This approach works for a while, and mainly through permitting a young artist (Don), who has never before sold a painting, to exhibit his work in the gallery. Don keeps Gladys company and talks to her. He thinks he notices her hearing problem worsening, but Howard tells him, "I’m afraid that’s more her memory than her hearing aid.” What speeds up her deterioration, however, is the gallery losing its lease when the owner of the space decides to turn it into a cafe. 
 

A path ensues that is familiar to many people who have been close to a person losing memory and other mental functions with age. The family desperately wants to keep Gladys as independent as possible, but they need more help as time passes. She can stay in her own apartment for awhile with visiting nurses and aides, but eventually she needs to move in with Ellen and Howard; they never liked the idea of putting her in a nursing home, and they never did. In an aside directed at the audience, Daniel describes what his mother did for Gladys thereafter: she “took care of her, dressed her and cleaned her up and fed her and watched her fall apart, day in and day out with nothing to stop it and no relief in sight.” It did end, though, two months later when Gladys died in Ellen’s home.

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Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Maggie O’Farrell describes the book in a scene involving a casual conversation she has with her mother over tea.

As she lifts the pot to the table, she asks me what I’m working on at the moment, and, as I swallow my water, I tell her I’m trying to write a life, told only through near death experiences. She is silent for a moment, readjusting cosy, milk jug, cup handles. ‘Is it your life?’ she asks. ‘Yes,’ I say, a touch nervously. I have no idea how she’ll feel about this. ‘It’s not…it’s just…snatches of a life. A string of moments. Some chapters will be long. Others might be really short.’ (pp. 142-143)
This conversation is the only place in the book where O’Farrell describes her intentions in writing it. But, what O’Farrell describes to her mother is exactly what the book is, a memoir comprising seventeen “brushes with death,” as she calls these moments. There is no prologue, there are no interludes, there is no coda, just the seventeen stories.

Few people will experience any one of these events, and perhaps only O’Farrell has experienced all of the events she tells us about. She categorizes them based on the anatomy involved in a particular brush with death. For example, some of the chapter names are: “Lungs” (three times), “Neck” (twice), “Abdomen,” “Intestines,” “Cerebellum,” “Circulatory System,” “Whole Body.” The one exception is the chapter, “Daughter.”

Other ways of categorizing the near-death experiences O’Farrell covers could be based on whether they threatened O’Farrell herself or any of her children, whether they were the result of bad luck (e.g., illness) or bad judgment (e.g., near drowning), or whether the threat originated outside the body (e.g., accident) or within the body (e.g., illness, medical procedures). The brushes with death from outside the body involved violence (twice), decapitation (twice), drowning (three times), a plunging commercial airliner, and a knife throwing exhibition. From within her body, close calls involved encephalitis as a child, amoebic dysentery while traveling in a developing country, a Cesarean section gone awry, and a few missed miscarriages (i.e., when fetus dies but no signs or symptoms manifest and surgical procedures become necessary). A daughter was born with severe allergic conditions that caused the child misery pretty much all the time interspersed with episodes of life-threatening reactions. O’Farrell’s son was almost lost in one of her near drownings.

O’Farrell leaves it to the epigraph she placed at the beginning of the book to stitch together how these stories collectively reveal the possibility of the human spirit to get us through the most serious and persistent challenges to our being. For this epigraph, she takes a line from Sylvia Plath’s novel, The Bell Jar:

I took a deep breath and listened to the old brag of my heart. I am, I am, I am.

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Annotated by:
Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

Esmé Weijun Wang is a novelist who has been diagnosed with Schizoaffective Disorder.  The Collected Schizophrenias is a book of personal essays that was the 2016 winner of the Graywolf Press Nonfiction Prize. 

A precocious young person on a track to success, Wang experiences a manic episode at Yale that leads to her first hospitalization.  After a second hospitalization, her college washes its hands of her.  Hitting roadblocks time and time again requires her to rebuild her life over and over.  This is not a conventional chronological autobiography but rather essays that provide different approaches to the author’s experience of mental illness.  The plural “schizophrenias” of the title encompasses the whole schizophrenic spectrum of disorders.  As Wang explains, her own diagnosis is “the fucked-up offspring of manic depression and schizophrenia” (p. 10).  

In an essay entitled “High-Functioning” we learn how the author, having been a fashion editor, knows how to pass for normal: “My makeup routine is minimal and consistent.  I can dress and daub when psychotic and when not psychotic.  I do it with zeal when manic.  If I’m depressed, I skip everything but the lipstick.  If I skip the lipstick, that means I haven’t even made it to the bathroom mirror” (p.44).  

Later, in “The Choice of Children,” volunteering at a camp for bipolar children makes Wang think about what it would be like to inflict her diagnosis on her own offspring.  In “Reality, On-Screen” she attempts to convey the sensation of decompensating to psychosis.  And in “Yale Will Not Save You” she considers the failure of universities to accommodate mentally ill students. 

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Summary:

This is a gripping, informative, and well-researched book about human blood. An accomplished journalist, Rose George, covers a variety of topics, largely in the U.S., Britain, and Canada but also in Nepal, India, and South Africa. She describes many current issues, provides historical background, and speculates on future technologies, such as replacement of blood by other fluids. There are nine sections:

 “My Pint”  While the book’s title refers to the author's volume of blood, this chapter’s title refers to a single pint she is donating. We read about blood supply (donated and stored blood) in the U.S. and—by contrast—in India.

“The Most Singular and Valuable Reptile” refers to the leech. This arresting chapter describes both historical and  modern uses of leeches to gather blood from humans. She visits a company called Biopharm in Wales where leeches are raised and prepared for shipment to medical clinics and hospitals.  

 “Janet and Percy” is a historical chapter focusing on Dame Janet Maria Vaughan, a central figure in creating the Blood Transfusion Service in England during WWII and Percy Oliver, who guided its predecessor, the London Blood Transfusion Service.  

“Blood Borne.”  This chapter describes Khayelitsha, South Africa, “the ugly backside of Cape Town” (p. 100): a place of poverty, crime, rape, sexual predation, and HIV. While rich nations provide assessment and treatment for people with HIV, poor nations have many citizens infected with the virus and, over time, rising rates of infection. 

 “The Yellow Stuff” describes the plasma portion of blood; it can be frozen (as FFP) and used as a filler for bleeding or trauma patients. Unlike blood—which can only be given without payment—plasma can be collected from paid donors. It is a largely traded commodity, part of a multi-billion dollar industry worldwide. Plasma carries Factor VIII, a crucial protein for clotting blood; hemophiliacs lack this and are at risk for death by bleeding externally or internally. Some plasma has been tainted, for example by HIV.

“Rotting Pickles.”  In Western Nepal (and other places), menstruation is taboo. George writes, “We are in a minority among species, and among mammals, to bleed every month.” She reviews historical views of women’s periods, mostly negative. Worldwide, there are many taboos, but also some educational efforts for public health that are helpful in impoverished areas.  

 “Nasty Cloths.” This tells the unusual story of an Indian man named Muruga, “a poorly educated workshop helper” who became a leader in creating sanitary protection for menstruating women. Worldwide, the feminine hygiene industry is some $23 billion. George also reviews related history, including Toxic Shock Syndrome from tampons.  

 “Code Red.” Bleeding is often a fatal factor in trauma, even with the best efforts to transfuse blood into the patient, unit after unit. George observes open chest techniques at a resuscitation. She reviews breakthroughs in blood typing, component therapy, and “buddy transfusions.”  

“Blood like Guinness: The Future.” George starts with images from the past: vampires, human drinkers of blood, past and, even, present. She interviews a purveyor of the concept that “young blood” is healthier than older blood. Can there be, discovered or created, blood substitutes that also save lives? 

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