Showing 91 - 100 of 676 annotations tagged with the keyword "Illness and the Family"

Blue Nights

Didion, Joan

Last Updated: Dec-22-2011
Annotated by:
Shafer, Audrey

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Joan Didion's memoir, The Year of Magical Thinking, chronicled the overlap of two catastrophes: the critical illness of her adopted daughter Quintana Roo and the sudden death of her husband of forty years, John Dunne. Between the writing of that memoir and its publication in 2005, Quintana died at age 39. She had suffered a 20 month illness which started as a flu, advanced to pneumonia and sepsis, with intracranial hemorrhage and other complications necessitating 5 surgeries and extended intensive care unit stays. Blue Nights is a meditation on Quintana, and her mother's consuming sense of loss over the tragedy of her only child.

Blue nights refer to the quality of the light during evenings around summer solstice, a time of year which the author feels starts the whole cycle of diminishment and death. The memoir begins with a reminiscence of Quintana's wedding in July 2003 (the same year she falls ill and Dunne dies), as seen 7 years on by Didion. Throughout the description of the wedding are particulars of dress, flowers, design choices and locale which are not only precise, but also hold tremendous meaning to Didion. The branding of clothing, furniture, dishware, hotels etc, is dominant in many parts of the book - the Didion-Dunnes' family life was filled with movie stars, glamorous restaurants, and the hard work of writing. We see Didion on book tours and backstage during the Vanessa Redgrave one woman show of A Year of Magical Thinking.

Although Quintana's death and dying are prominent in the book, her whole life is explored. Issues of her adoption, her mental illness(es), her precociousness and talents, and above all, her relationship with her mother are intimately explored. The reader is given her childhood poems and descriptions of her nightmares and toys.

Another prominent theme is aging. The author was born in 1934, the same year, she notes, as Sophia Loren. Didion experiences neuromuscular problems and describes a particularly frightening episode of loss of consciousness and bleeding. She fears the deterioration of her cognitive abilities and laments she is unable to gain weight. She has a supportive and loving family and network of friends, but ultimately she ponders her aloneness, the lack of someone's name to write down on hospital forms as her emergency contact.  

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Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

This is a huge and wonderful book about cancer, the collection of diseases that sickens people all over the globe and kills many of them. An epigraph to the book states, “A quarter of all American deaths, and about 15 percent of all deaths worldwide, will be attributed to cancer,” but the book also describes medical advances that now heal, prevent, or palliate most forms of cancer.

Mukherjee, a cancer physician and researcher, has several strong themes. He sees cancer as an affliction with a long history, a story worthy of a biography; indeed recent discoveries show it to be rooted in our genes (although external factors such as viruses, asbestos, and tobacco smoke can cause genetic disruption). The story of cancer implies a surrounding triangle, the stories of sick people, treating physicians, and biological researchers, all of which Mukherjee artfully weaves across 472 pages. Cancer has Rohrschach blot qualities: depending on time, place, and role in life, humans have perceived different attributes of cancer. As the book ends, however, there is a coalescence of scientific understanding that is satisfying—although there is certainly more to be learned and we are all still vulnerable to genetic errors and, of course, we are intractably mortal.

Another strand is the nature of stories themselves, their twists and turns, presumed early solutions, and personal and social values embedded in them. Mukherjee threads throughout the book the case of a contemporary kindergarten teacher, Carla Reed, who has a leukemia. He bookends his text with ancient Persian Queen Atossa with (presumably) breast cancer. Reed, healed by the end of the book, was Mukherjee’s patient; Atossa was described by Herodotus: both suffered emotional turmoil because of their disease.  Mukherjee understands the affective dimensions of disease for patients and caregivers alike; literature represents these in various ways, and he quotes in his chapter epigraphs and in his prose many writers who describe human experience deeply: Aleksandr Solzhenitsyn, Susan Sontag, Charles Dickens, Thomas Mann, William Carlos Williams, Carlo Levi, and Italo Calvino, to name a few.

The primary story, however, is the interplay of cancer and a large cast of observers, investigators, doctors, scientists, activists, and government officials. Sidney Farber and Mary Lasker dominate the first 100 pages with their two-decade war against cancer. While surgery—historically dramatic and disfiguring—had been a mainstay for treatment of cancer, Farber pursued a biochemical route, which elaborated into chemotherapy, the second major approach of the late 20th century.

Mukherjee also explains ancient views, Hippocrates’, Galen’s humors, Vasealius’ anatomy, Hunter’s stages, Lister’s antisepsis, and Röntgen’s X-rays, which became the third major approach. By 1980, however, the American “War on Cancer” had not been won.

Further advances in cellular biology and genetics would be needed to make targeted molecular therapy possible.  Mukherjee tells this complicated story clearly and engagingly, showing the human investigators to be personable and dogged in their pursuits.  

Another important approach is prevention. The biostatistical work of Doll and Hill, for example, showed the links between tobacco and lung cancer. Screening, such as Pap smears and mammograms, also saved lives, but the basic cellular understanding still eluded investigators.

The final 150 pages explain the search for and discovery of genetic factors, specifically oncogenes. Harold Varmus and J. Michael Bishop were the leaders, winning a Nobel Prize in 1989. Bert Vogelstein, Judah Folkman, Robert Weinberg and Douglas Hanahan took the work further, opening the doors for such drugs as Herceptin, Gleevec, and Avastin. 

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As the film opens, Gianni (Kim Rossi Stuart) prepares to meet for the first time the child he fathered 15 years earlier. The boy, Paolo (Andrea Rossi), was born with cerebral palsy and is of below average intelligence as well as being physically handicapped. Paolo's 19-year-old mother died when he was born, and Gianni could not bear to see the baby, or to have any subsequent contact with him. Paolo has been raised by his uncle, the dead woman's brother. Now Gianni, who lives in Milan with his wife and baby, prepares to take Paolo to a rehabilitation facility in Germany.

Paolo is trusting and does not question Gianni's long absence from his life. He manages to walk with the help of a cane, and tries to function as independently as he is physically capable of. When Gianni tries to feed him with a fork, Paolo responds by feeding Gianni instead. Many such small gestures that Paolo makes towards Gianni loosen Gianni's reserve, and each begins to respond to the other with affection.

In Germany, neither Gianni nor Paolo understand the language--in this they are equally disadvantaged. Gianni meets Nicole (Charlotte Rampling), mother to a teenage girl whose palsied speech impairment makes her unintelligible to anyone except Nicole. From the way that Gianni interacts with Paolo, Nicole senses that Gianni is Paolo's father, although Gianni at first denies it, claiming he is a friend of the family. When Gianni finally is truthful with Nicole, and worries about how Paolo will survive as an adult, she warns him that suffering is inevitable for the parent of an impaired child.

Gianni is horrified by the intensive physical therapy regimen to which Paolo is subjected in the German rehab facility, and removes the boy from therapy. He decides to bring Paolo home with him, but as they are driving back to Italy, Paolo "acts out" and Gianni realizes to his great sorrow that Paolo wishes to return to his uncle and live as he has for the first 15 years of his life. He has the keys to the house he grew up in and doesn't want to give them up.

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Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

This short, gripping book describes Taylor's massive stroke, a burst blood vessel in the left side of her brain. Ironically, she was at 37, a neuroanatomist at Harvard, well versed in the anatomy and function of the brain. Her knowledge allowed her to understand from the inside her rapid loss of mental function and, with treatment, her very long (some eight years) recovery to health and, once again, professional activity.

Taylor presents an overview of brain structure and function, emphasizing the different roles of the left and right hemispheres. Since her left hemisphere was damaged and needed to be "rebuilt," in her term (learning to read, to dress herself, to drive a car, to think), she had plenty of time to explore her right brain and understand its wisdom and peace. This is her insight: our culture prizes the admirable but often frantic work of the left brain, putting us in stressed, competitive modes of thinking and acting, often aggressive and argumentative. "My stroke of insight," she writes, "is that at the core of my right hemisphere consciousness is a character that is directly connected to my feeling of deep inner peace" (page 133). Both sides of the brain have their strengths and uses, but she especially enjoys the spiritual and humane aspects of the right brain and, by extension, invites her readers to consider these resources for themselves and for the larger society.

Taylor credits her mother's care for much of the recovery, although it is clear between the lines that Taylor herself worked hard with various therapists (speech, massage, acupuncture). Despite the severity of her injury and the surgery, she appears to have returned to professional work at a high level, fully recovered and very grateful.

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Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Sherwin Nuland has had a distinguished career as a surgeon on the faculty at Yale University and as an author with interests in history of medicine, medical ethics, and medical humanism. In this memoir we become acquainted with a different side of Nuland, that of son to a widowed, immigrant father with whom the author had a complex and difficult relationship.

We learn also that Nuland has suffered from depression on and off since he was preadolescent, experiencing a major breakdown in midlife. This book attempts to make sense out of the family dynamics and the depression. At the same time, it describes the insular world of Russian Jewish immigrants living in New York City's Lower East Side and Bronx in the first half of the 20th century.

Nuland explores, frankly and openly, his ambivalent relationship with his father, Meyer Nudelman, and contrasting adoration of his mother, who died when Nuland was 11. The young Sherwin (Sheppy) Nudelman lived in fear of his father's strict rules and unpredictable anger. Further, Sheppy was required to assist his father whenever he went out of the house because Meyer Nudelman had an unsteady gait that made walking difficult and that became increasingly severe. Although the boy initially enjoyed these neighborhood jaunts with his father, he was increasingly resentful of them as his father's condition deteriorated and as his own interests focused more on people and activities outside the home. His father's strong Yiddish accent, strange gait, and sloppy appearance were a major embarrassment.

The last third of Lost in America--chronologically the era of World War II, the Nazi atrocities, and after--concern Nuland's maturation and his path toward the profession of medicine. As he and his brother, Harvey, were contemplating a future in the world of Gentiles, they decided to change their last name from Nudelman to Nuland. Sherwin Nuland was accepted to medical school at "Waspy" Yale and chose to enroll there, deliberately distancing himself (on the surface) from his father and his culture.

In medical school Nuland realized that Meyer Nudelman's physical symptoms were caused by late stage syphilis. The initial shock and disbelief of that discovery dissipated; Meyer's growing helplessness and tremendous pride in the accomplishment of his son allowed for a measure of understanding and affection between the two.

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Creation tells the story of Charles Darwin (Paul Bettany) at home with his family in Down House during the last decade he researched and wrote, but hesitated to publish, The Origin of Species (1859).  The film represents the sorrow of those intellectually ripe years when he worked out his insights into the process of natural selection as his "radiant," beloved daughter Annie-Anne Elizabeth-(Martha West) became fatally ill.  These events were compounded by Darwin's own mysterious chronic illness, which he attempted to relieve through laudanum and trips to Great Malvern for Gulley's cold water cures.

In 1851 he took a very sick ten-year-old Annie with him to the waters and, inconsolable, left her to be buried in the local churchyard.  Through his physical and emotional suffering, he continued to dissect barnacles, breed and skeletonize pigeons, engage the village parson and local farmers alike, consult with supporters Thomas Hooker and Thomas Huxley, exchange hundreds of letters, and remain an affectionate father and husband. 

The loss of "the joy of the Household" strengthened his wife Emma's (Jennifer Connelly) religious beliefs, as it exhausted whatever might have existed of his. The story, artfully told in beautifully sequenced flashbacks, keeps the tensions and accommodations between Charles and Emma on the subject of religious faith in balance, emphasizing their loving partnership as spouses and parents.  Emma supported his work, read his manuscript, and understood its importance, even as she disagreed with its implications for her spiritual life.  Darwin contributed to the local parish church Emma attended.    

Some of the most compelling moments in the film occur during Darwin's joyous outings with his children when they suddenly witness the demise of woodland creatures.  In these scenes, the ineluctable struggles between life and death that Darwin's theory of natural selection eloquently describes resonate with his personal experience.  We see a fledgling fall from its nest near a sheep's skull and decay before our eyes.  We hear Annie explain to her horrified siblings that if the fox they encounter didn't kill the screeching rabbit in its jaws, its pups would die.

These scenes, along with the earlier view of the captive Fuegian child Boat Memory dying of small pox in an English hospital, suggest the fragility of the young that Annie's death makes devastatingly personal for Darwin.  The film simultaneously acknowledges Darwin's empirically derived logic of such deaths in his scientific treatise and his suffering from the brutal manifestations of that logic in the life of his family.  While scientific explanation fails to console him for the loss of Annie, the film suggests human affection as the best, though still potentially painful response.     

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Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

On July 5, 1998, physics Professor Alan Cromer suffered a heart attack on a plane, and survived after almost an hour of resuscitation efforts, but sustained brain injury from lack of oxygen.  In this chronicle of caregiving, his wife, a psychiatric nurse by training, gives a very personal, detailed account of the radical adaptations his disability required of both of them.  Her story includes reflection on his and her own emotional adjustments to loss of parity in communication and awareness, practical adjustments to physical limitations, and social adjustments to family, friends and professional colleagues.

Arduously, over time, Alan regained some ability to read and speak--indeed, he spoke to groups with Janet about their life together during the peak of his rehabilitation.  But the road to even partial recovery was bumpy, and the writer fully acknowledges the pain, grief, irritation, and deep frustrations that intersected moments of authentic pleasure, discovery, and mutual kindness.  Professor Cromer died September 3, 2005.

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Annotated by:
Donley, Carol

Primary Category: Literature / Nonfiction

Genre: Investigative Journalism

Summary:

In 1951 when Henrietta Lacks was dying of cancer in the colored ward of Johns Hopkins, cancer cells taken from her without her knowledge "became the first immortal human cells grown in a laboratory"(4).  Known as HeLa cells, they are still reproducing today and are used world wide in research for cancer, cloning, genetics, Parkinsons, and many technologies. Henrietta's family did not know she was the source of these immortal cells until scientists began testing the family members too.  Poor and black, they were very angry to find the white establishment had made fortunes using HeLa cells while the family got nothing for it and couldn't even get good health care. In her thorough and careful investigation, Rebecca Skloot interviewed the Lacks family; scientists, doctors, and others who worked with HeLa cells; historians; journalists; ethicists. This book traces the complex stages of her search for the truth about what happened to Henrietta Lacks, her HeLa cells, and her family.

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Annotated by:
Shafer, Audrey

Primary Category: Literature / Nonfiction

Genre: Anthology (Essays)

Summary:

As explained in the succinct yet thorough introduction by co-editor Kimberly Myers, an international conference on the topic of "The Patient" was convened at Bucknell University in Pennsylvania in 2006. This collection of essays, which range from personal experience to scholarly literary critique, results from the conference presentations.
 
Of the ten essays, four concern personal or familial experience of illness. These four cover a vast range: literature and disability specialist Kristin Lindgren describes her story of the elusive diagnosis of chronic fatigue syndrome and her coping skills; medical humanities and medical ethics expert Carol Schilling offers a poignant narrative of her experience as a mother of a previously healthy, athletic son who suffers a cervical spine injury from a skiing accident; Gayle Whittier places the story of her daughter's disability amongst a trio of nonfictional and fictional narratives of disability and illness; and renowned poet Tess Gallagher explores her relationship with and caring of her mother who has Alzheimer's disease. These essays, written as they are by women steeped in literature and writing, are not merely chronicles; rather they are infused with commentary on story and the meaning of life as story, journey and relationship.
 
The other six essays are likewise diverse and range from cultural/political studies from the Navajo to the Irish (which includes literary analysis of works by poets Eavan Boland and Nuala Ní Dhomhnaill), to insightful critiques of literary works such as  Hjalmar Soderberg 's Doctor Glas, Lauren Slater's Lying: A Metaphorical Memoir, Brian Clark's Whose Life Is It Anyway?, Alejandros Amenabar's film The Sea Inside (Mar Adentro), and George (Marian Evans) Eliot's Janet's Repentance.

Consistent with the nature of medical humanities, the essays cross boundaries. For example, Whittier weaves her experiences as a mother of a disabled child with reflections on embodiment and literary critique. Gallagher compares the notions of time in poem-making with the necessity to live in the moment when caring for a loved one with Alzheimer's. She notes: "Of the written arts, poetry is most responsive to the moment and so coincides with the condensed time frame of those with Alzheimer's - which oscillates between the distant past and the present moment." (p. 71) Schilling tenderly writes of her family (for an illness strikes not just the patient): "We live the best lives we can, folding each of our stories into one another's." (p. 40) Diedrich explores not just the (at times infuriating) play with deceit in Lying, but also examines the ways in which patients lie and medical language obfuscates illness. She further explores, with great insight, expectations: of literary reviewers, patients and physicians.

 

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At first the title seems to relate to the main character's lay-off or departure from his job as a professional cellist in a bankrupt and dissolving orchestra.  As the story continues, the title's unpredictable meaning becomes clear. 

Not surprisingly, jobs for cellists are difficult to find. Shattered by his desperate situation, Daigo, the central character (Masahiro Motoki), and his wife Mika (Ryoko Hirosue), return from the city to his hometown where they begin to experience stresses and discomforts associated with joblessness.  After a long period of searching, Daigo responds to an ad for someone to work in departures. Believing that he is applying for a travel advisor job, he discovers that the position involves the ceremonial art of caring for the bodies of those who have recently died--or departed.  He learns about encoffination, the elaborate ritual of washing and dressing the body before placement in the casket prior to burial, from Sasaski (Tsutomu Yamazaki), his new employer. 

Mika is so appalled and ashamed when she learns about his new career, she decides to leave him.  In spite of his own unhappiness, Daigo continues on.  With the remarkably skilled Sasaski at his side, Daigo develops great sensitivity in the ritualized care that is provided before family mourners.  Each of the caring situations becomes for Daigo, a rich story about the textures of human life.  He seeks solace for himself and another measure of dignity for the departed by playing beautiful music on his cello.  Most viewers, including the eventually reconciled Mika, are impressed by the beauty of this probably unfamiliar Japanese ceremony.

Another moving dimension of Daigo's personal story occurs when information is revealed about the father who had abandoned him when he was a child.  Circumstances intervene so that Daigo's new skills and sensitivities contribute to an understanding of that distant past and an opportunity to provide his father with a dignified departure ceremony.    

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