Showing 1 - 10 of 737 annotations tagged with the keyword "Illness and the Family"

Sinkhole

Patterson, Juliet

Last Updated: Jan-18-2023
Annotated by:
Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The first few pages of Sinkhole recount the final moments of the author’s father’s life, as the author imagines they occurred.  Slipping away from the bedroom where his wife sleeps, her father writes a note and leaves the house for the last time.  It is nearly zero degrees in Minneapolis as he proceeds to the park where he usually walks his dog. All of this has been methodically planned: “My father chooses to die on the north end of the bridge.  There, the canopy is so dense that, from the street, the structure appears to grow from the hill. In the dim light spreading from the railings, the crown of its arch bestows darkness” (p.4).
 
Immediately following her father’s suicide, author Juliet Patterson is, naturally, overcome.  After the initial shock, she begins to wonder about her father’s motivation.  She realizes she did not know him as well as she had thought.  Theirs is a family that “rarely talked about important things” (p.9).  One of those things is that both her father’s father and mother’s father had also taken their own lives.  She begins to ask questions: “Who were these men?  What led to these deaths in my family?  What did my family’s history of suicide imply?  And what did it mean for my own future?” (p.10) The remainder of Sinkhole tells the story of how the author investigates the death of her grandfathers, a quest that takes her back to her family’s ancestral home in Kansas.   

One day, on an impulse, the author locates her grandmother’s abandoned house.  Like other properties in this part of the country where there were formerly mines, it has fallen into a sinkhole.  She sees the “terrifying alien world of a sinkhole” (p.111) as a metaphor for “a realm that I could not enter,” as she struggles to make sense of her family’s past. Eventually she undergoes a transformation and comes to terms with her loss.  The least she can do to break the cycle is to be honest about her family history with her young son.     

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Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Through ten short chapters, family doctor Susan Boron explains the origin of her neologism, “tokothanatology,” the study of common practices that surround both birth and death, events that “bookend” our existence. Daughter of an obstetrician who pioneered family-centered birth and spouse of a man who worked in palliative care, Boron noticed the tremendous similarities in the gestures, rituals, and obligations of dealing with both the beginning and the end of life. The obligations extend to the loved ones in the sphere of patients in care--a practice, she writes, “from pre-cradle to post-grave.” 

One chapter reviews the rituals emerging from many different cultures and religions; another examines portrayals of birthing and dying in image and word; yet another addresses the impact of sudden and unanticipated outcomes. Ethical and legal dilemmas and the contingencies imposed by time and place are discussed frankly.  

Recognizing the advantages of medical technologies, she is nevertheless skeptical of their utility in every case and includes practical advice for dealing with pain, showing that midwifery techniques could enhance palliation. Throughout, she acknowledges that things have changed, are changing, and will change again. Sources are referenced in footnotes. 

In the end, the repeated message is one we’ve heard many times before, offered in a refreshing way: the importance of empathy and of listening to the patient's wishes in birthing and in dying. 

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The Last Strawberry

Swan, Rita

Last Updated: Nov-14-2022

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

In her memoir, The Last Strawberry, Rita Swan describes the illness and death of her sixteen-month-old son, Matthew. As practicing Christian Scientists, Swan and her husband observe their son’s sudden symptoms and unusual behavior but do not visit a pediatrician because their church prohibits medical treatment. Instead, they hire Christian Science “practitioners” whose goal is to effect a cure through prayer. These prayers, however, fail, and Matthew’s condition quickly deteriorates. After days of unsuccessful faith-based treatment, Swan decides, in desperation and opposition to church doctrine, to bring her son to a hospital, where he is diagnosed with advanced spinal meningitis. Dismayed by her decision “to resort to materia medica,” the practitioners refuse the family further spiritual support (35). Swan recalls, “We brought our Christian Science books to our comatose child in the intensive care unit. We read, whispered, prayed, and cried over him for hours every day, whether our Church believed it was right or not” (37). Matthew eventually died in the hospital in July 1977.

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The Mouth Agape

Pialat, Maurice

Last Updated: Nov-07-2022
Annotated by:
Teagarden, J. Russell

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

“Can you take your mother home? There’s no point our keeping her here,” the doctor says to Phillipe about his mother, Monique. Her breast cancer has spread to her spine and probably her brain. Monique had been staying with Phillipe and his wife, Nathalie, in their cramped apartment in Paris during her treatment. They took her to her home in Auvergne, and there she remained, confined to her bed, until she died. 

Monique’s husband, Roger, cared for her while also managing the family retail clothing store beneath their apartment. He spoon-fed her, cleaned her, and tried to make her comfortable with the aid of visiting nurses. Phillipe and Nathalie came from Paris to help care for Monique and provide some relief for Roger. As Monique deteriorated, she required more and more of their attention, which was made all the more difficult when she lost her ability to speak. Fatigue set in and nerves frayed. Nevertheless, when Monique died, tears were shed, hugs were shared, and memories were recounted. 

Through it all, though, not one of three family members exhibited a bit of grace. As they had before Monique became ill, they lied to each other, cheated on each other, and stole from each other while caring for her. None were above physical abuse—“you slapped me for no reason,” Nathalie reminds Phillipe, Roger paws his female customers just below where Monique lies ill in her bed. Monique, no angel herself, had behaved similarly before cancer crimped her style. After the funeral, Roger returned to his store, and Phillipe and Nathalie to Paris, where they ostensibly would pick up where they left off with their lives of banal wantonness. 
 

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Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

In The Unseen Shore: Memories of a Christian Science Childhood, Thomas Simmons narrates the physical, emotional, and spiritual anguish of growing up in, and later leaving, the Christian Science Church. “Have I escaped now? Enormous question—who knows?” writes Simmons, “The obvious answer is Yes, of course I’ve escaped. I now go to doctors; I no longer lie for helpless hours in bed, writhing and trying to pray” (5). Christian Science teaches that illness and pain are illusions of an unreal material world, and that human suffering can be healed through prayer. As the founder of Christian Science, Mary Baker Eddy, wrote in Science and Health with Key to the Scriptures, "Sin, disease, whatever seems real to material sense, is unreal in divine Science" (353). Simmons explains how this theological indoctrination distorted his view of the material world, morality, and the human body: “I remember very clearly several occasions when Sunday school teachers would warn us that medical doctors were not to be trusted because the world they believed in was not our world—it was the world of mortal mind, of disease and distress” (4). Simmons wavers uneasily between apostasy and piety, questioning if he should trust his physical, bodily senses (“mortal mind”) or the numinous promises of Divine care. As he grows up practicing Christian Science, suffering untreated ear infections and other illnesses, he struggles to maintain a posture of devotion while coping with spiritual misgivings.

These “tremors of doubt”, however, haunt Simmons beyond childhood into his adult years (106). Yet two powerful experiences draw him away from Christian Science: the study and composition of poetry and “the love of bodies” (67). In need of a different kind of spiritual direction, Simmons turns to poets whose works celebrate the beauty of the concrete world, realizing that “. . . I want the world, want its physical hardness and qualities of light and sound, the depths of its touch and soul. In the words of poets and teachers I see my own path back into that world” (129). Another key incident occurs following a bout of spiritual renewal when Simmons interviews to become a Christian Science practitioner (a kind of minister who prays for ailing Church members). Stopping to savor the beauty of the California coastline, he hopes the gorgeous expanse will reveal a divine sign affirming his spiritual ambition. He receives an altogether different omen, however, one he considers mockingly lewd, in the form of a naked man exercising on the beach below where he sits: “And yet I could not quite leave. For a few seconds I watched this man run. Far from admiring the precision of his muscles or the stillness of his torso as he moved his legs, I rejected them: they could hold no sway over me, for they were not real. But they remained interesting in their unreality” (156). (Readers might imagine this nude interloper as Vesalius’s anatomical man from De humani corporis fabrica [1555], who stretches and moves with certainty, exhibiting the magnificent brawn and sinews of the human form.) In this moment, Simmons's spiritual optimism almost vanishes, unnerved by the physically real, naked human materiality in which he will ultimately find solace and beauty.

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Barefoot Doctor: A Novel

Xue, Can

Last Updated: Sep-06-2022
Annotated by:
Miksanek, Tony

Primary Category: Literature / Fiction — Secondary Category: Literature /

Genre: Novel

Summary:

Yun Village, China is a remote town near the mountains. Its 2,438 inhabitants are mostly poor but remarkably optimistic and stoic. Ancestors from the spirit realm visit the hamlet and roam the mountainside. The living and the dead appear to communicate with relative ease. Mrs. Yi (Chunxiu), more than fifty years old, is the village's vibrant "barefoot doctor" - an essentially self-taught healthcare provider with only six months of formal medical training under her belt. Yi's husband is quite supportive of her work. Their only child died at age two.

Yi is revered for her knowledge, patience, and compassion. Most afflictions she treats are chronic diseases, but Yi also delivers babies, cares for children with measles, and counsels a woman who attempted suicide. The therapeutic benefit of attentive, concerned listening along with reassurance are evident in her interactions with patients.

Traditional Chinese herbs, acupuncture, and Western medicine are all in the healer's armamentarium. Yi cultivates herbs and also forages on the mountain for other useful plants. She supposes, "Sickness and herbs are lovers" (p244). As Yi grows older, the need for a successor - a devoted, younger barefoot doctor - is always on her mind. She successfully identifies candidates, then inspires and mentors them.


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Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Nonfiction

Genre: Autobiography

Summary:

All the [medical] world’s a stage! In elegant prose, with Felliniesque flights into whimsical metaphor, physician-historian-playwright Charles Hayter describes his encounters with cancer, as a doctor and as a son, and how the experience changed him as a person. 

Just as he finishes his residency training as a cancer specialist, his stoic physician father develops cancer. The story of that family illness is interwoven with vivid case histories of patients, recounted personally rather than clinically. These patients display many of the characteristic reactions and behaviors of his own father. 

Several other themes are prominent: the losing battle against death – or rather Death--who is a character lurking in the corners of the consultation rooms; the tensions of a son trying to please his difficult parents with advice and understanding that they seem not to want; the bravery of a gay man coming out to his wife and children to find a new place in the world. 
 

These struggles are placed on a background of the nebulous status of radiation therapy, a maligned and misunderstood specialty.

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Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The author’s beloved Jewish mother is a great storyteller. A favorite tale describes how her grandmother was shot dead while sitting on the family’s Winnipeg porch nursing her baby. An accomplished investigative journalist, author Hoffman assumes it is fiction but decides to investigate. He is astonished to discover that, indeed, his great-grandmother was murdered, although the details deviate slightly from the family tradition. 

Through official records, the Census, and newspaper accounts he pieces together the circumstances of her life and death and the frustrated search for her killer. In the process, he learns a great deal about his ancestors and the world of Jewish immigrants in early twentieth-century Canada. Eager to share his findings, he is confronted by his mother’s decline into dementia and the poignant difficulties of grasping and reshaping memories, both collective and individual. 

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The Steel Windpipe

Bulgakov, Mikhail

Last Updated: Jun-02-2022
Annotated by:
Coulehan, Jack

Primary Category: Literature / Fiction

Genre: Short Story

Summary:

A little girl is brought to the rural hospital by her mother, who throws herself at the feet of the young doctor, “Please do something to save my daughter!” It seems that she has been suffering from a sore throat and is now having difficulty breathing. The doctor looks into her throat; diphtheria is evident.At first he scolds the mother for not having brought the girl earlier. Then he suggests surgery: a tracheotomy. The doctor knows this is the only way he might save the child, but he is consumed by anxiety because he has never performed the procedure. At first the mother objects to surgery, but then relents. The tracheotomy is successful and the child survives.

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Annotated by:
Dammeyer, Kristen

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Life According to Sam provides insight into the life of Sampson “Sam” Berns and his family. At the beginning of the film, Sam states, “I want you to know me.” Accordingly, the film alternates between highlighting Sam’s experiences as he navigates life as a teenage boy and his participation in the first ever clinical trial for progeria.  At the start of the film, Sam is a 13-year-old boy in middle school. As with many other boys his age, his interests include Legos, music, and spending time with his friends, or his “bros” as he affectionately calls them.  

But Sam was diagnosed with progeria just prior to his second birthday. Progeria is a rare disease that affects approximately 250 children worldwide, caused by a genetic mutation which codes for the formation of an abnormal toxic protein, protegrin, that builds up in organs over time. It is a premature aging syndrome that causes progressive cardiovascular decline and for which there is no cure. The average age of death for these children is 13, and they die primarily of heart attacks and strokes.  

At the time of Sam’s birth his mother Leslie was a pediatric intern and his father, Scott, a pediatric emergency medicine physician. After his diagnosis, the family devoted themselves to progeria, an orphan disease which at the time had no identified genetic etiology, no foundation, no research, and no treatment. With the help of Leslie’s sister Audrey, the family started The Progeria Research Foundation, which raised over $1.25 million dollars, funded the discovery of the gene for progeria, and began the first clinical trials to test treatment for the disease. 

In the film, Leslie spearheads the first ever clinical trial for the treatment of progeria. The drug, lonafarnib, had demonstrated efficacy in mice and was FDA approved for a clinical trial including 28 children from 16 countries. The children would receive the medication for 2.5 years and return to Boston Children’s Hospital three times per year for a battery of tests. At the end of the trial, Leslie goes through the arduous process of writing up the results and submitting the trial for publication in hopes of making the drug more widely available for children with progeria. In the end, the trial results are published and the results for individual patients are released. While the medication falls short of being a cure, there are glimpses of hope in patients whose disease progression has been slowed or even reversed.

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