Showing 1 - 10 of 269 annotations tagged with the keyword "Chronic Illness/Chronic Disease"

The Story of Beautiful Girl

Simon, Rachel

Last Updated: Aug-07-2017
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

On a stormy night in 1968 a retired, widowed schoolteacher in rural Pennsylvania opens her door to find a young couple, she white, he African American, wrapped in blankets, drenched, and silent.  Letting them in changes her life.  They have escaped together from a nearby mental institution most locals simply call "The School."  The young woman has recently given birth.  When Martha lets them in, her life changes forever.   Supervisors from "the School" show up at the door, the young man escapes, and the young woman, memorably beautiful, is taken back into custody.  The only words she is able to speak out of what we learn has been a years-long silence are "Hide her."  Thus she leaves her newborn baby to be raised by a stranger.  The remaining chapters span more than forty years in the stories of these people, linked by fate and love and the brutalities of an unreformed system that incarcerated, neglected, and not infrequently abused people who were often misdiagnosed.  Homan, the young man who loved Lynnie, the beautiful girl from the institution, was deaf, not retarded.  Lynnie was simply "slow," but a gifted artist who recorded many of the events of her life in drawings she shared only with the one attendant who valued and loved her.  Though her pregnancy resulted from being raped by a staff member, the deaf man longs to protect her and care for the baby.  Years separate them; Homan eventually learns signing; Lynnie's sister befriends her and an exposé results in the closure of the institution.  Over those years Lynnie and Homan witness much cultural change in treatment of people like them who were once systematically excluded.  They find social identities that once would have been entirely unavailable to them.  And eventually, after literal and figurative journeys of discovery, they rediscover each other.   

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Primary Category: Literature / Nonfiction

Genre: Graphic Memoir

Summary:

In-Between Days: A Memoir about Living with Cancer is an accurate and suggestive title. At 37, Teva Harrison was diagnosed with Stage IV breast cancer with metastases to her bones. She lives between hopes for new treatments allowing a useful life but also fears about debility—some already caused by her treatments—and death. An artist, she has created a hybrid of a graphic novel with comic-book style drawing on the left page and traditional prose facing on the right, with variations of this format now and then.     
       
The imaginative world of the book ranges widely in mood, topic, and subject matter, and there is a helpful organization to group the material.
Her Preface tells us how drawing helped her gain some power over “the bogeyman that is my cancer” (p. 1). In her Prologue, she tells of “living in the shadows,” or “liminal spaces,” but choosing to occupy these as best she can (p. 3).            

Part One lays out the medical facts and dilemmas. The sections are Diagnosis, Treatment, and Side Effects. The author describes the turmoil of being sick with no clear cause, the emotional impact of the serious diagnosis on her and her family, also nausea, loss of fertility, dilemmas of pain management, and many side effects of treatment, including weight loss as well as sudden and torturous menopause.
  
Part Two explains her social status, her marriage, her “mixed-bag inheritance” (including high-risk Ashkenazi genes), and social aspects, including feeling invisible as a patient, accepting help from friends, being in a support group, and what does a likely “early demise” mean for her, an atheist?
         

Part Three explores the many emotions in sections for hope (using clinical trials, for example), gratitudes (“At least I’m wasting, not bloating”), wishes, fears, and “Managing Anxiety at Home” (pictures of yoga, gardening, long walks, house cleaning), self-blame, and—nonetheless—dreams. The final section “Incurable” names her current status: “In treatment for the rest of my life,” but the facing picture shows her as a large powerful bird flying among dramatic clouds with the words “I mean what do I have to lose?” Her prose affirms: “Live like a tornado, when I can.” 

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The Illumination

Brockmeier, Kevin

Last Updated: Jun-28-2017
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Brockmeier constructed this novel as six individual stories. No overriding plot carries across all the stories, and none of the individual stories has much of a plot either. But, each is tangentially related to the subsequent story through a journal comprising love notes written daily by a husband to his wife that passes from one story to the next.  

I love the ball you curl into when you wake up in the morning but don’t want to get out from under the covers. I love the last question you ask me before bedtime. I love the way you alphabetize the CDs, but arrange the books by height. I love you in your blue winter coat that looks like upholstery fabric. I love the scent of your hair just after you’ve taken a shower… (p. 16)  

The stories share characters, but only insofar as they are involved in the transfer of the journal.  

Also connecting the stories is a phenomenon in which visible light is produced from the location of the body where there is pain, injury, or disease, and in one case an inanimate object—the journal. It just started to happen.  

The Illumination: who had coined the term, which pundit or editorial writer, no one knew, but soon enough—within hours, it seemed—that was what people were calling it. The same thing was happening all over the world. In hospitals and prison yards, nursing home and battered women’s shelters, wherever the sick and injured were found, a light could be seen flowing from their bodies. Their wounds were filled with it, brimming. (p. 138)  

The Illumination
is part of every story, but never the main subject. It’s noticed, it’s discussed, it’s contemplated, and eventually accommodated as part of daily existence:  “everyone began to accept that pain now came coupled together with light.” (p. 139) The Illumination is always there, was always there, and will always be there because “there is no such thing as photonic degradation, that light was effectively immortal, or at least as immortal as the universe itself.” (p. 256)

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Annotated by:
Glass, Guy

Primary Category: Literature / Poetry

Genre: Biography

Summary:

Robert Lowell: Setting the River on Fire is “a study of genius, mania, and character” of American poet Robert Lowell (1917-1977).  It is meant to be neither an autobiography nor a critical study of Lowell’s literary output, but a study of an artist and his lifelong battle with Bipolar I Disorder, and an appreciation of how his art and illness were inseparably linked. The author, Kay Redfield Jamison, is a distinguished psychologist who has been quite open about her own struggles with the same disease, and whose lifework consists of exploring the link between Bipolar Disorder and creativity.     

Eschewing a purely chronological approach, Jamison divides her work into sections entitled “Origins,” “Illness,” “Character,” “Illness and Art,” and “Mortality.” In the first, she traces the history of mental illness within the poet’s illustrious Boston family.  We learn that Lowell’s great-great-grandmother was institutionalized at McLean Asylum for the Insane, which was to be the site of several of the poet’s own hospitalizations.  “Illness” is a clinical case study in prodromal childhood symptoms that progress to full-blown manic episodes. We follow the progress made by 20th century psychiatry from psychotherapy and ECT to Thorazine, and, finally, with the introduction of Lithium, to the possibility of prophylaxis against recurrences.
Later, in “Illness and Art,” Jamison brings her thoughts about creativity and art to full fruition by discussing what her research reveals about writers and artists.    

Appendices include diagnostic criteria for Bipolar Disorder, and an explanation of how Lowell’s psychiatric and medical records were made available by his daughter for the benefit of this volume.  

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Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Volck’s memoir describes his medical practice and learning in a variety of settings (Cleveland, Baltimore, Cincinnati), but, more importantly, in non-metropolitan places, such as Tuba City on the Navajo Reservation in Arizona and rural clinics in Honduras. He suggests that his knowledge of medicine has largely come as he has practiced it and not from his formal education. Further, he believes that best medical practice is not primarily high-tech, urban, or industrial. Each of the 15 chapters has a title—a topic, a person, or a theme—but also one or more locations specified. For example, we have “Chapter One, A Wedding, Navajo Nation, Northern Arizona,” suggesting the importance of culture and locale. Further, the chapters include personal associations from several realms beyond the topic and place as Volck seeks to understand medicine, healthcare, and how we live in the world.           

Of the first seven chapters, five are set in Navajo land, where Volck is an outsider by his cultural heritage and his profession, a doctor with a pediatrics specialty. From time to time he reflects on his training, the English verb “to attend,” and specific patients, such as two-year-old Alice in Tuba City and eight-year-old Brian in Cleveland. Both children died while in his care. Working on the front-line of medicine, he considers the weaknesses of our modern attitudes toward death and our wishes for control. He also wrestles with personal lifestyle issues of balancing medicine, family, and an urge to write.
 
           
Other chapters describe restlessness in his profession, the growth of his family (including the adoption of a Guatemalan baby girl), hiking in the Grand Canyon, camping in the rain, and a retreat with Benedictine monks. Chapter 11 “Embodying the Word” discusses literature and medicine, lectio divina (a Benedictine reading practice), and the need to listen carefully to patients’ stories.
           
The final chapter returns to Cincinnati, Honduras, and Tuba City. Volck has found more projects in the Navajo Nation, including a youth service project from his church. With permission, he conducts interviews and plans a book on the Navajo, “drawing on cultural history, anthropology, history, medicine, and politics” (p. 201).

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Annotated by:
Glass, Guy

Primary Category: Literature / Literature

Genre: Memoir

Summary:

James Rhodes is a British classical concert pianist who is known for his iconoclastic, pop-inspired performing style.  He is also an outspoken survivor of childhood sexual abuse who is equally frank about his struggles with severe mental illness. Rhodes’s memoir Instrumental is a tribute to the healing power of music.  Indeed, music quite literally saves the author’s life; it is only when a friend smuggles an iPod loaded with Bach into his psych ward that Rhodes regains the will to live.   

Rhodes does not mince words.  We learn that he was violently raped by a gym teacher on a regular basis for five years from the age of five. Left with severe internal injuries that produce wracking pain, he requires multiple surgeries.  He soon also develops dissociative symptoms, drug and alcohol addiction, self-injurious behaviors, and chronic suicidal ideation. Barely able to function, he endures many tumultuous years during which he abandons the piano.  The author’s subsequent journey from physical and emotional fragmentation to wholeness through music provides the substance of his book.
 

The preface to Instrumental is designated “Prelude,” and the ensuing twenty chapters, labeled “tracks,” all correspond to musical works.  (All twenty tracks may be listened to, for free, on Spotify.) In addition, as if to assure the reader he is in good company, Rhodes offers psychological profiles of famous composers.  We learn, for example, that Bruckner suffered from a morbid obsession with numbers, and that Schumann, after throwing himself in the Rhine, died in an asylum.  

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Annotated by:
Clark, Mark

Primary Category: Literature / Nonfiction

Genre: Criticism

Summary:

The Renewal of Generosity: Illness, Medicine, and How to Live contemplates the phenomenon of generosity as it is realized in the stories of physicians and patients.  For Arthur Frank, generosity is grounded in the willingness of people to give themselves over to dialogical processes of communication wherein participants best realize themselves through relational engagement: generous, dialogical communication leads to a renewal and realization of human being. Health care systems today tend to impede communicative generosity, however, and the result is a de-humanization and de-moralization of both physicians and patients.  As a remedy, Frank proposes, first, that we re-figure our conceptualization of the physician-patient relationship—from the economic or business metaphor of “provider” and “client,” we should turn to the metaphorical conceptualization of “host” and “guest,” which clearly has implications for manner of treatment and communication that occurs in the relationship.  In addition, Frank turns to and thinks with stories of physicians and stories of the ill to reflect on the ways that generosity is realized.  Drawing on the wisdom of the striking philosophical triumvirate of Marcus Aurelius (Stoicism), Mikhail Bakhtin (Dialogism), and Emmanuel Levinas  to amplify the reflections emerging from the physician and patient stories, Frank ultimately proposes “exercises” for training to generate a vivifying generosity within the medical profession, which can in turn lead to a re-humanization and re-moralization for physicians, improved care for patients, and enhanced flourishing for all.



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Is It All in Your Head?

O'Sullivan, Suzanne

Last Updated: Mar-17-2017
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

Suzanne O’Sullivan is a neurologist in the British National Health Service. She has a particular interest in psychosomatic illnesses, and in this book, she covers what she has learned about them. O’Sullivan provides these learnings mostly from clinical experience rather than as findings from empiric studies on psychosomatic illnesses.   

Each chapter is built around one or more case studies that focus on particular psychosomatic illnesses, and include historical perspectives and various theories that might explain why they occur.  

The cases O’Sullivan uses presented themselves as seizures, paralysis, urinary tract troubles, generalized and localized pain, gastrointestinal problems, fatigue, blindness, and dystonia. Patients sometimes came to her with pre-determined diagnoses such as epilepsy, Lyme disease, chronic fatigue syndrome, myalgic encephalomyelitis, and fibromyalgia among others. O’Sullivan is emphatic that psychosomatic illnesses are not just any presentation of illness that cannot be linked to a pathological basis. Psychosomatic illnesses arise from “the subconscious mind [that] reproduces symptoms that make sense to the individual’s understanding of how a disease behaves.” (p. 83) Illness presentations that are feigned or self-inflicted (e.g., Munchausen’s syndrome) are not psychosomatic illnesses in O’Sullivan’s view.
 

Each chapter delves into some particular aspect of psychosomatic illness relevant to the case study. These include history (e.g., role of the uterus in hysteria), mechanisms at work (e.g., conversion reactions, dissociation), triggers (e.g., stress, loss, personality traits), factors (e.g., previous illness experiences), illness behavior disorders (e.g., associating illness to benign physical sensations), and the higher incidence seen among females. Though O’Sullivan teases out various characteristics and workings of psychosomatic illnesses, she admits that they remain vexing to clinicians because, “almost any function of the body can be affected in almost any way.” (p. 170)

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Annotated by:
Teagarden, J. Russell

Primary Category: Performing Arts / Film, TV, Video

Genre: TV Program

Summary:

The Knick was inspired by the Knickerbocker Hospital, founded in Harlem in 1862 to serve the poor. In this 20-part TV series spread out over two seasons, the fictional Knick is somewhere in the lower half of Manhattan around 1900. The time covered during the series is not marked in any distinct way. The characters don’t age much, and although fashion and customs remain static during the series, the scope and significance of advancements that come into play were actually adopted over a longer time than the episodes cover.   

The series builds on some known history. The central character, the chief surgeon Dr. John Thackery, is modeled on a famous surgeon of the time, Dr. William Halsted, in both his surgical adventurism and in his drug addictions. The character Dr. Algernon Edwards, who is an African-American, Harvard-educated, and European-trained surgeon, is based in part on Dr. Louis T. Wright, who became the first African-American surgeon at Harlem Hospital during the first half of the 20th century.  

Storylines of human drama and folly run through the series. Among them are medical cases both ordinary and bizarre, heroic successes and catastrophic failures, loves won and lost, gilded lives and wretched existences, honor and corruption, racism and more racism. Within and around these storylines are the scientific, medical, and industrial advances of the period, as well as the social contexts that form fin de si
ècle hospital care and medical research in New York City.
 

Some of the industrial advances we see adopted by the hospital include electrification, telephone service, and electric-powered ambulances. We see that transitions to these new technologies are not without risks and catastrophes: patients and hospital staff are electrocuted, and when the ambulance batteries died -- a frequent occurrence-- many of the patients they carried died, too.

Medical advances integrated into various episodes include x-rays, electric-powered suction devices, and an inflatable balloon for intrauterine compression to stop bleeding. Thackery is a driven researcher taking on some of the big problems of the day, such as making blood transfusions safe, curing syphilis, and discovering the physiologic mechanisms of drug addiction. We see how he learns at the cost of his patients, or rather his subjects. We also glimpse movements directed at population health. For example, epidemiological methods are applied to find the source of a typhoid outbreak, which drew from the actual case of Mary Mallon (aka, Typhoid Mary). Shown juxtaposed to the advances epidemiology was then promising is the concurrent interest that was rising in eugenics and its broad application to control for unwanted groups. Research ethics and regulations were a long way off.


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Diabetes

Dickey, James

Last Updated: Feb-01-2017
Annotated by:
Coulehan, Jack

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

In the first part of this poem ("Sugar"), Dickey gives a wonderful series of images of diabetic symptoms: "I thirsted like a prince," "my belly going round with self- / made night-water," "having a tongue / of flame . . . . " The doctor preaches insulin and moderation. The poet tries to comply. He seems to accept this new life, "A livable death at last."In the poem's second part ("Under Buzzards"), the poet and his "companion" climb to a point on Hogback Ridge where they see buzzards circling. Seeing the birds of death, he reflects on his life and illness. Is all this medicine and moderation worthwhile? What will they accomplish? Regarding the body, the poet writes, "For its medical books is not / Everything: everything is how / Much glory is in it . . . . " In the end he takes "a long drink of beer."

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