Showing 1 - 10 of 729 annotations tagged with the keyword "Illness and the Family"

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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Summary:

Sarah Leavitt’s graphic memoir, Tangles: A Story About Alzheimer’s, My Mother, and Me, narrates and vividly illustrates the pain and difficulty of caring for a loved one with Alzheimer’s disease. Leavitt’s memoir shares her family’s experiences nursing their mother, Midge Leavitt, for six years following her diagnosis at the early age of 52. “I created this book,” Leavitt explains, “to remember her as she was before she got sick, but also to remember her as she was during her illness, the ways in which she was transformed and the way in which parts of her endured” (Leavitt 1). The memoir’s spare, black-and-white panels trace her mother’s deterioration from the first, seemingly innocuous symptoms (such as misremembering conversations and forgetting to unplug an iron) to the debilitating and tragic manifestations of Alzheimer’s, such as confusion, behavioral changes, aphasia, and ultimately, the inability to recognize loved ones. As greatly painful as these experiences were for Leavitt, she singles out from the murk and monotony of caregiving moments that inspire laughter, introspection, and gratitude. Early one morning, Leavitt’s mother wakes her to admire a fresh, “glittering” snowfall (86). On another occasion, Leavitt illustrates a rainstorm. Instead of keeping dry, her mother wants to stand in the downpour: “So finally we let go of her. She stuck out her tongue to taste the rain” (78). For Leavitt, humor brings, if not understanding, comfort when the stifling presence of her mother’s suffering goes momentarily unfelt. Caregiving also stirs recollections about her mother’s personality. Leavitt remembers, for instance, her mother’s love of Granny Smith apples: “She ate the core and stem and everything, crunching loudly” (23). She remembers her mother’s love of nature, “. . . plants, worms, rocks, soil. She did not seem separate from it as most people did” (93). Her mother also adores the poetry of E. E. Cummings and Robert Frost and Aretha Franklin’s music. Leavitt does not allow suffering to efface her mother’s personality, providing a poignantly moving account of how caregiving shapes memory and deepens family love in unexpected ways.

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The End of Days

MacLaverty, Bernard

Last Updated: Feb-28-2022
Annotated by:
Miksanek, Tony

Primary Category: Literature / Fiction

Genre: Short Story

Summary:

Autumn in Vienna, 1918. Menace circulated in the air itself and fear was rampant as a global pandemic and a World War raged. Egon, an artist, and his wife Edi, six months pregnant, had enough money to live on but hardly any opportunities to spend it. Shortages of coal for heat and flour for bread were continuous. Edi has suddenly become very ill - trouble breathing, loss of appetite, exhaustion, fever, and explosive coughing that produces blood. It is the Spanish flu and pneumonia.

Egon devotedly cares for his sick wife despite her warning, "You will get it from me" (p111). Soon she is unresponsive. As Egon listens for a heartbeat with his ear against Edi's motionless chest, he can only auscultate the distant, faint beat of his unborn child's heart that is quickly silent. He tragically describes Edi's corpse: "Her body being both cradle and coffin, within a minute" (p128). Egon feels compelled to make multiple sketches of his dead wife.

Before long, Egon experiences harsh bouts of coughing, fever, and chills. He becomes remorseful about the drawings he made of Edi and burns them in the kitchen stove. Egon gazes at the fire, knowing he too will die shortly but aware that he will be survived by all his other artwork.

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One Friday in April

Antrim, Donald

Last Updated: Feb-08-2022
Annotated by:
Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

As One Friday in April opens, we find Donald Antrim in an agitated state on the roof of his Brooklyn apartment building.  He paces, and alternately climbs down the fire escape, hangs from the railing, and lies on his stomach peering over the ledge.  Repeated outpatient courses of psychotropic medication and psychotherapy have done only so much for his deteriorating mental state, and the situation has come to a head. Disheveled and wild-looking, he manages to return home whereupon his friends take him to a psychiatric hospital.  

A MacArthur Fellow and author of several acclaimed novels, Antrim has previously published a memoir of his upbringing with his alcoholic mother.  In this new memoir, flashbacks of childhood neglect and chaos are juxtaposed with the present day as he takes the reader through the acute phase of his illness:  a lengthy hospitalization, a course of ECT, discharge from the hospital, rehospitalization, and eventual stabilization.   

The author considers his condition to be suicide, noting that “depression is a concavity, a sloping downward and a return.  Suicide, in my experience, is not that.  I believe that suicide is a natural history, a disease process, not an act or a choice, a decision or a wish…I will refer to suicide, not depression” (pp. 14-15).  

The book ends on a hopeful note. After several relationships that might be described as codependent, Antrim meets his current partner, whom he marries.  He sees the roof of his building through his window and remembers a certain Friday in April but is comforted by the sound of his wife playing Chopin and Bach on the piano.  

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Seeing Red

Meruane, Lina

Last Updated: Jan-31-2022
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Before it happened there was the dread of it. “They were brittle, those veins that sprouted from my retina and coiled and snaked through the transparent humor of my eye,” says Lina Meruane, the first-person narrator and main character. If those veins burst, Lina could go blind. All that can be done to prevent such a disaster she’s told, “is to keep watch day by day over its millimetric expansions...keep watch over the sinuous movement of the venous web advancing toward the center of my eye.” Adding to her dread are “impossible admonitions to follow.”
Stop smoking...don’t hold your breath, don’t cough, do not for any reason pick up heavy packages, boxes, suitcases. Never ever lean over, or dive headfirst into water. The carnal throes of passion were forbidden, because even an ardent kiss could cause my veins to burst. (p. 5)
And then, “it was happening. Right then, happening” (p. 3). She had only bent over to retrieve a syringe for her scheduled insulin injection. She’s paralyzed. “I didn’t straighten up or move an inch, didn’t even try to breath while I watched the show. Because that was the last thing I would see, that night, through that eye: a deep, black blood (p. 4).

Lina is in the dissertation stage of a PhD degree at a New York City university. The story veers from this pursuit to one of restoring her eyesight. The other primary characters are Lina’s Galacian love interest and fellow academic, Ignacio, who shepherds her through this journey, her New York retinal specialist, Dr. Lekz, and her parents who are both physicians—her father a cardiologist, her mother a pediatrician—practicing in Lina’s native country, Chile.

Soon after the bleeding incident, Lekz tells Lina that at least a month would be needed for her eyes “to clear up so I can take a look at this mess” (p. 32). “Weren’t you going to go to Chile to see your family? Go to Chile. Take a vacation” (p. 33). The story relocates from New York to Santiago, and from Lina’s medical problems to her familial dynamics—“I never wanted you to be my doctor, it’s enough for you to be my father” (p. 50). The visit also becomes a time for Lina—and Ignacio—to see what life might be like if she never regained full sight, and to contemplate options for such an eventuality. She had become “an apprentice blind woman” (p. 20).

Lina and Ignacio return to New York city for the hoped-for reparative surgery. The procedure produces promising signs, but Lina must wait at least the four weeks it takes for Helium gas bubbles to dissipate so Lekz can see the results. During this period, Lina tries to keep her head position down and her spirits up. Often the opposite resulted. Before four weeks passes, however,
Blood, again, in my eye. A fine thread of blood that comes from I don’t know where...I’m watching as the eye watches its thread of blood, looking at everything without ceasing my cries: I’m bleeding I’m bleeding again. (p. 142)
Futility looms, “knowing they were going to operate on me but that no cure existed” (p. 113).  Lina and Lekz consider their options. After Lina’s initial bleeding incident, Lekz had “dropped the phrase transplants in experimental stages” (p. 5). The idea stuck with her. She had spoken about it separately with her mother and Ignacio. Both were fraught conversations. Nevertheless, Lina and Lekz return to the topic.

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Daughter

Davis, Cortney

Last Updated: Jan-17-2022
Annotated by:
Shafer, Audrey

Primary Category: Literature / Poetry

Genre: Collection (Poems)

Summary:

Davis, a nurse practitioner, chronicles her daughter’s life, illness and death at age 54 from cancer. The book consists of three sections, with poems unevenly divided such that of the 30 poems, only one rests in section II. Titled Windmill, this poem forms a fulcrum between the relationship of mother and daughter to one of mother and ill daughter. The windmill is a small gift from her daughter – a reminder of Kansas where the daughter, her husband and children live, thousands of miles from Davis. The collection begins with her ‘soon-to-be born daughter’ (page 15) and ends with The Sacrament of Time, dated months before her daughter’s death from, at this point, a widely metastatic breast cancer. The final poem holds within it an entire world – the birth of the daughter, the fraught frantic mother-to-be pleading for help, the birth of a healthy baby girl, the wonder of the new addition to their family, the travel with the newborn to home, and a reflection on what poems can and cannot do. “Poems cannot // save us, Amichai said, but all I have are these poems” (page 58).  

If the first section details the many ways unconditional love for a child unfolds, through wonders of babyhood, delights of childhood, the harsh lessons of adolescence, and the successful launch, the final section underscores how deep that love runs. As the cancer illness progressed during the pandemic, issues of separation became more acute. Davis marks the numbers affected (illness and death) by coronavirus (SARS-CoV-2, COVID-19) during the pandemic, as her poems follow her daughter’s cancer. These numbers, along with brief quotations from her daughter’s scans and reports, lend a contrast to the evocative imagery and experience of illness in a loved one. Medical mistakes are chronicled as well (see What a Terrible Mistake).  

The collection is dedicated to Davis’ daughter and her daughter’s children. Even the title, Daughter, calls to her, as if addressing her daughter directly. The title also serves to universalize the parenting of a daughter, even as the particulars of this family are detailed.

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Nervous System

Meruane, Lina

Last Updated: Dec-13-2021
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Ella needs time for finishing her doctoral dissertation on black holes she has been writing for years and thinks an illness could provide the time: “Just enough to take one semester off, to not have to teach all those planetary sciences classes to so many distracted students whom she had to instruct evaluate forget immediately (p. 6). Before she can decide which illness would best suit her purposes, a mysterious illness finds her.
 A sudden cramp shoots down the spine and then, stillness... (p. 9)
An unbearable stinging had settled into her shoulder neck ember... (p. 10)
She felt an invisible wound wrapping her up and suffocating her... (p.10)
A slight numbness that starts in the shoulder and extends along the arm to the elbow until it reaches the back of her right hand, the fingers where it all started. (p. 12)
Inflammatio. In flames. En llamas. Ardor without romance. (p. 10)
Quickly, then, the story shifts from Ella’s dissertation odyssey to her diagnostic odyssey. As she makes her way along this journey during the first chapter, other characters come into the picture: El, Ella’s long-term boyfriend and forensic scientist, is one. The others in her family history are “the Father,” “the Mother,” “the Brother,” and “the Twins”—none are ever named (neither, really, is Ella or El because they are “she” and “he,” respectively in Spanish). Except for the Twins, each of the subsequent four chapters center on one of these characters and how they figure into the family history. Just as in the first chapter, the stories are told through and around the health challenges each character faced; all harrowing, many life-threatening, and some metaphorical.

Ever present in these histories is the story of Ella’s birth mother,“genetic Mother”. She died giving birth to Ella. Ella’s stepmother, “the Mother,” is called at different times, “the volunteer Mother,” “the replacement Mother,” and “the living Mother.” The Brother, alternatively known as “the Firstborn,” shares with Ella her birth mother and was born nine years before her. The Twins, known separately as “the Boy Twin” and “the Girl Twin,” came after the Father remarried. Another dimension shaping the stories is both the Father and the replacement Mother work as practicing physicians. 

Ella’s prominence in each chapter makes her our witness to El’s recovery after an explosion rips through his mass grave excavation site, and his many surgeries for separate gastrointestinal troubles; the Mother’s aggressive and brutal breast cancer treatment; the Firstborn’s recurring bone fractures (an “osseous enigma”); and the Father’s bleeding ulcers and life-threatening hemorrhagic complications from prostate surgery. 

The author, Lina Meruane, structured the book in a somewhat unconventional form. She delineates sections within each chapter with asterisks centered on the page (“***”), and these sections rarely comprise more than two paragraphs. Dialog is neither separated from other text nor signaled with quotation marks. The text moves back in forth in time, from here to there in place (presumably somewhere in South America), and sometimes takes the form of pensées rather than plot narrative. But, overall, the book moves towards resolving some mysteries surrounding family history.

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Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Nonfiction

Genre: History

Summary:

In a 1976 Archives of Neurology essay, the neurologist Robert Katzman successfully argued for relabeling “senility” as “Alzheimer’s disease.” He urged rejecting various forms of dementia and senility as common consequences of aging, and accepting them as a disease requiring all the attention any other important disease deserves. Now medicine and society had a problem—"The Problem of Dementia,” the famed physician Lewis Thomas called it in a 1981 essay published by the popular magazine Discover, and he noted that, suddenly, “a disease of the century” had arisen (p. 3).

Forty years on, Jason Karlawish thinks there is still a problem, but in keeping with Katzman’s call, he refers to “The Problem with Alzheimer’s.” Based on the history he covers and the experiences he shares in this book, nothing of much significance has occurred since “The Problem of Dementia” became the “The Problem of Alzheimer’s.”

Karlawish is a physician who cares for people with Alzheimer’s and a researcher delving into “issues at the intersections of care, ethics, and policy” (p. 5).  He draws on his experiences in this book, which he describes as “the story of how once upon a time, Alzheimer’s disease was a rare disease, and then it became common, and then it turned into a crisis.” Karlawish wants to answer why during the time between Thomas’ essay and the year 2010, “nothing really changed,” and how that could be the case in “the richest and most powerful nation.” (p. 6) He tells this story in four parts.

The first part concentrates on efforts clinicians and researchers were making following Thomas’ call to distinguish Alzheimer’s disease from normal aging, other dementia types (e.g., frontotemporal, Lewy body), and precursor syndromes (e.g., minimal cognitive impairment). They were looking for definitive clinical patterns, imaging studies, diagnostic tests, and pathologic markers for the disease. 

In the second part, Karlawish goes back in time to when Alois Alzheimer first found what are known today as “plaques” in the brain of a patient who had an early onset of severe, progressive dementia. He traces the attention this finding drew to eventual advances in imaging and biochemistry aimed at diagnosis. Karlawish also covers how a cascade of events over the decades following Alois Alzheimer’s finding disrupted the pursuit of a pathophysiological basis for dementia. These events included the rise and dominance of Freudian psychology; followed by two world wars; the cold war; the overshadowing of AIDS; Medicare political and funding constraints; tussles among patient advocacy groups; loss of asylums where care and research had coexisted; clinical failure of the first drug; and the continued debate over whether dementia is a consequence of aging or is a disease. 

Karlawish moves on in the third and fourth parts to cover what “we will have to learn to live with the disease so as to improve the lives of persons...to provide the care they need to live well at home...and repair the broken system” (p. 171). Success in his view requires integrated biological, psychological, and social components. He reports the progress on each of these three fronts: some failed approaches continue to fail (such as drugs targeting amyloid); some psychological interventions show promise (though at times causing moral tension); some of the social configurations engineered for Alzheimer’s patients, families, caregivers, and society have produced triumphs and some disasters. He has much to say about why and how this search must go on, but with some much-needed course corrections. 

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Everything is Fine

Granata, Vince

Last Updated: Oct-03-2021
Annotated by:
Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Vince Granata, the author of Everything is Fine, remembers feeling at the age of 4 that the day his triplet siblings were brought to their suburban Connecticut home from the hospital was the best day of his life.  For many years, to all appearances, his was the perfect family.   

Then, while in college, his brother Tim develops a psychotic disorder.  Refusing treatment, he becomes more and more delusional.  He speaks frequently about killing himself and is convinced his mother has raped him.  Announcing that “demons are everywhere” (p.115) he enters his parents’ bedroom and throws salt at them as they sleep. His mother, though trained as an emergency physician, dismisses the idea he could become violent: “Everything is fine” (p.122).  

When Vince receives a phone call that his brother has killed his mother, he rushes home from teaching abroad to find yellow tape surrounding the house.  The immediate, surrealistic concern is to have a company clean the traces of his mother from the rug.   

Over the next few years, Tim is treated to restore him to competency so he can stand trial.  Vince and his father visit Tim faithfully in a facility while two other siblings cannot bring themselves to face him.  A friend insightfully prophesies “I hope you will eventually be able to find some peace and feel whole again…though that might be your life’s work” (p. 149). Indeed, while his brother recuperates, Vince goes through his own healing process. He dedicates himself to understanding schizophrenia and the shortcomings in our mental health care system, and, finally, writes this book.  

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