Still Alice

Glatzer, Richard; Westmoreland, Wash

Last Updated: May-11-2023

Sharma, Sneha

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Still Alice is a dramatic film based on a novel by neuroscientist Lisa Genova. It is the story of Alice Howland (played by Julianne Moore), a Columbia University linguistics professor whose life is upended by the diagnosis of early-onset familial Alzheimer’s disease shortly after her 50th birthday. What begins insidiously with difficulty finding a word during an important lecture, and getting lost on a familiar running trail, rapidly progresses to more devastating lapses in memory and cognition that are a stark contrast from Alice’s usual function. On top of this, the family is faced with the reality that Alice’s children are also at risk for this genetic condition.

Scenes of Alice’s life are intermixed with her extensive cognitive evaluation by a neurologist. In the office, we watch her struggle to remember the name and address of an imaginary person within minutes of her neurologist telling her; at home, we observe the way she forgets beloved recipes, and even the people she has met just moments before.

As the film progresses, it becomes increasingly painful to watch the deterioration of Alice’s condition, and the effect it has on her loved ones. We see the raw humanity of her grappling with this in various realms—in a particularly heartbreaking scene, she experiences incontinence for the first time because she can’t find the bathroom in her own home. In a later scene, she forgets her daughter after watching her perform in a play. Throughout the film, she clings desperately to her phone, in which she has listed certain essential questions about her life that she feels, if eventually forgotten, warrant her suicide by overdosing on sleeping pills.

Despite these enormous challenges to both her sense of self and her relationships, Alice’s character is presented with the resilience of so many individuals who suffer from Alzheimer’s disease. In a pivotal scene, Alice speaks at an Alzheimer’s Association conference; despite needing to highlight each sentence as she reads it to remember what she has already said, she is able to share her story authentically as the audience and her family is moved to tears.

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Living

Hermanus, Oliver

Last Updated: Apr-13-2023

Brungardt, Gerard

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Living is a remake of Akira Kurosawa's Ikiru, itself his homage to Tolstoy's novella The Death of Ivan Ilyich. The screenplay is by Kazuo Ishiguro, who may be the perfect person for the job - born in Japan, raised in Britain, Nobel laureate in literature. The movie stays faithful to the original (some scenes almost frame for frame) while at the same time providing a more contemporary time, place, and English language (with the run time decreased from 143 to 102 minutes) all combining to provide a greater accessibility for many today.

The protagonist, Mr. Williams (Bill Nighy), is the long-standing director of the bureaucratic Public Works Department in post-WWII London. When given a terminal prognosis he starts asking the big questions of life, quickly finding out that not only does he not know the answers but is struggling to phrase the proper questions.

After a brief time trying to find his answers through a night on the town, Williams befriends a former Public Works employee, a bright and vivacious young lady who, journeying with him, leads him to the threshold of what he is looking for. The film remains loyal to one of Kurosawa's most acclaimed devices when, after his funeral, we are told the rest of Williams' journey to find himself as his co-workers share their memories, piecing together the final few weeks of his life.

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Sinkhole

Patterson, Juliet

Last Updated: Jan-18-2023

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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Bookends: A Family Doctor Explores Birth, Death, and Tokothanatology

Boron, Susan

Last Updated: Dec-06-2022

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 Mouth Agape

Pialat, Maurice

Last Updated: Nov-07-2022

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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Barefoot Doctor: A Novel

Xue, Can

Last Updated: Sep-06-2022

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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Cancer Confidential: Backstage Dramas in the Radiation Clinic

Hayter, Charles

Last Updated: Aug-23-2022

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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The End of Her: Racing against Alzheimers to solve a murder

Hoffman, Wayne

Last Updated: Aug-01-2022

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

Coulehan, Jack

Primary Category: Literature / Fiction

Genre: Short Story

Life According to Sam

Fine, Sean; Nix Fine, Andrea

Last Updated: May-26-2022

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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