A Matter of Death and Life

Yalom, Irvin; Yalom, Marilyn

Last Updated: Jun-02-2022

Coulehan, Jack

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

After 65 years of marriage, two life-partners face the prospect of final separation, as one of them develops multiple myeloma. This is the crisis that led Irvin Yalom, eminent psychiatrist, novelist, and pioneer of existential psychotherapy, and his wife Marilyn, acclaimed feminist author and historian, to collaborate in writing the story of their journey through Marilyn’s final months of life. In the resulting book, Irvin and Marilyn write alternating chapters until Marilyn becomes unable to write. After her death, Irvin continues with the story of his bereavement.

Marilyn’s chapters include reflections on love and illness, ranging from Emily Dickinson and Henry James to Paul the Apostle. She frequently expresses her gratitude: “I can still talk, read, and answer my emails. I am surrounded by loving people in a comfortable and attractive home.” (p. 20) Most of all, she is thankful for her husband, “the most loving of caretakers.” (p. 15) Yet, as her disease progresses, she comes “to the understanding that I would never be the same again—that I would pass through days of unspeakable misery while my body would decline and weaken.” (p. 76) She decides to pursue the option of physician-assisted suicide, which is legal in California, when her suffering becomes overwhelming.

In his chapters, Irvin resists this decision, maintaining hope for additional “good” life, despite all evidence to the contrary. Near the end, Marilyn’s pain and other symptoms become so severe that she cries out, “It’s time, Irv. It’s time. No more, please. No more.” (p. 139) Her physician arrives, confirms her intention, and surrounded by her whole family, Marilyn sucks the liquid through a straw and quietly passes away.

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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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The Sleeping Beauties and Other Stories of Mystery Illness

O'Sullivan, Suzanne

Last Updated: May-23-2022

Coulehan, Jack

Primary Category: Literature / Nonfiction

Genre: Longform journalism

Summary:

In Sweden, hundreds of children lie unconscious for months or even years in their homes or hospitals. Full neurologic evaluation, including MRIs, EEGs, and other studies reveal no abnormalities. None of these children are Swedish. They are immigrants from the Near East or former Soviet republics, whose families are seeking permanent asylum in Sweden. If asylum is granted, the children gradually recover. Neurologists have named this mysterious illness “resignation syndrome” and classified it a functional neurological disorder.

Suzanne O’Sullivan, an Irish neurologist, set out in 2018 to study children suffering from resignation syndrome, a project that led her to investigate other outbreaks of mysterious illness around the world. In The Sleeping Beauties, O’Sullivan discusses many such disorders, ranging from grisi siknis in Nicaragua (convulsions and visual hallucinations) to a form of sleeping sickness in Kazakhstan. These disorders have several features in common: absence of findings on medical and psychiatric tests, contagiousness (i.e. they seem to spread rapidly among populations in close contact), and significant morbidity.

Dr. O’Sullivan notes “there is a disconnect between the way mass psychogenic disease is defined and discussed by the small number of experts who study it and how it is understood outside those circles.” (p. 257) The public finds reports of such illnesses difficult to believe. In the United States, we tend to believe that such illness, if it exists at all, occurs only in “backward” cultures and not in our enlightened society. On the contrary, the author presents “Havana syndrome,” as a case of mass psychogenic disease that first appeared among American diplomats in the Cuban capital in 2016. No consistent brain abnormalities have ever been found, and extensive study has ruled-out the possibility of a sonic weapon. Dr. O’Sullivan believes that Havana syndrome is very likely a functional neurologic disorder occurring against “a background of chronic tensions within a close-knit community.” (p. 257)

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The Urge: Our History of Addiction

Fisher, Carl Erik

Last Updated: May-02-2022

Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The Urge: Our History of Addiction, by Carl Erik Fisher, a psychiatrist, is really two books in one. It is a comprehensive history of addiction from ancient times to the present day. It is also a memoir of the author’s own struggle with addiction and an attempt “to understand how I went from being a newly minted physician in a psychiatry residency program…to a psychiatric patient” (p.ix).

Fisher has grown up with two alcoholic parents. Even as his mother’s drinking “suppresses her blood counts and causes her to miss the chemo sessions I have worked so hard to arrange” (p. 294), she does not stop. Fisher’s own first drink, in high school, is a revelation. He blows his interview for his first-choice college when he shows up late and hung over. His intelligence enables him to get by, but eventually the problem catches up with him as he begins to use Adderall and marijuana to counteract the effects of alcohol. After sleeping through and missing his residency orientation, he is under scrutiny. Finally, he has a drug-induced manic episode that results in his being tasered by the police, and he is forced into treatment.

In the historical sequences of the book, we discover that one of the oldest known examples of addiction is found as far back as the Rig Veda (1000 BC). From there we move through time, learning how Native American populations were devastated by alcohol, how Alcoholics Anonymous achieved prominence, and about the multiple challenges that persist to the present day.

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The First Wave

Heineman, Matthew

Last Updated: Apr-18-2022

Bruell , Lucy

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

First Wave documents the early days of the COVID-19 pandemic at Long Island Jewish Medical Center (LIJ) in New York from March through June of 2020. It opens with a graphic scene of a rapid response team trying to save a patient with COVID whose heart has stopped. Despite their efforts, the patient dies. After the team pauses for a minute of silence at the bedside, the grueling work of saving lives continues.

The film follows Dr. Nathalie Dougé, an internist who was born in the Bronx to Haitian parents. Most of her patients are Black, Hispanic or immigrant. Two patients with COVID are essential workers: Brussels Jabon, a Filipino nurse who undergoes an emergency C-section after she is brought to the emergency room, and Ahmed Ellis, a school safety officer with the NYPD. Both have young children and supportive families.

Nurses hold up IPads so families can Facetime with the patients. It’s terrifying and sad for the families to see the patients on screen and not to be present when they are needed the most. It’s emotionally difficult for the healthcare team as well who are the only ones to hold a patient’s hand during these encounters. One nurse describes the effect of holding the phone while family members have five minutes to Facetime with patients, “You become the family member, and it seems like you’re losing your family.”

The emotional toll of losing so many patients, while fearing that they too may contract the virus and bring it home to their own families, weighs heavily on the healthcare teams. They are trained to compartmentalize, to separate work from personal life but their empathetic response to their patients follows them home. “I think about him every night when I go home,” nurse Kelli Wunsch says of Ahmed. “I just want him to do well.”

Scene after scene of teams rushing to resuscitate a patient who has coded are interspersed with more hopeful moments of a reunion between husband and wife, the sound of the song “Here Comes the Sun” when a patient is taken off the ventilator, and the cheerful encouragement of a physical therapist working to help a patient regain enough strength and mobility to be discharged. At times the camera moves outside the confines of the hospital to the outside world: Dr. Dougé alone at home with her dog celebrating her birthday with friends over zoom, eerily empty streets during the lockdown, and families anxiously awaiting news from the hospital. We see bodies taken to refrigerated trucks and people cheering the health workers at 7pm from windows across the city.

In May, when protests erupt following George Floyd’s murder, Dr. Dougé, joins the protest with other frontline workers carrying a sign, “Racism is a Public Health Issue” and ”I Can’t Breathe” scrawled on her surgical mask. Amid the “I Can’t Breathe” cries of the protestors, she relives the myriad times she has heard her patients gasping those words to her just before they are placed on ventilators.

Both Brussel and Ahmed become stable enough to be taken off the ventilator and released from the hospital to return home to their families. Despite their recovery from the acute phase of the illness, it is clear their health remains severely compromised. As the cheers of the staff in the hospital lobby fade, tough work lies ahead for these patients and their families.

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The Shapeless Unease: A Year of Not Sleeping

Harvey, Samantha

Last Updated: Apr-04-2022

Teagarden, J. Russell

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

In the opening dialog, the author, Samantha Harvey, tells a friend what this book is about.

Friend:    What are you writing?
Me:    Not sure, some essays. Not really essays. Not essays at all. Some things.
Friend:    About what?
Me:         Not sure. This and that. About not sleeping, mainly. But death keeps creeping in. (p. 1)

That’s as good a description of the book as could otherwise be offered.

As unstructured as the book’s content is, so is the book’s format. The only breaks in the text are distinguished by infinity signs. Time stamps are placed within the text between some of these breaks. The times are sequenced during a night (or a composite of nights) when Harvey is awake between midnight and 7:30 am. Texts following the time stamps describe the acute effects of insomnia on her at those particular moments and could be read as diary or journal entries.

Harvey’s insomnia came suddenly at the age of forty-three and morphed into an unrelenting assault that at times made her wonder if the only sleep available to her is the sleep of the dead.

When I don’t sleep and don’t sleep and don’t sleep, I don’t want my life; neither do I have in me the propulsion (courage? know-how?) to take it. So I have to endure my life when it’s unendurable, and this is an impasse. (p. 33)

Can I escape this? The sword hangs. There is nothing to put my mind at rest – every day presents a new threat: the night. Every night is a battle, most often lost, and any victory is one day long, until its challenger comes along: the next night. I understand why people kill themselves, or break down. (p. 82)

Throughout the book, across all the text sections, and following all the time stamps, Harvey details what insomnia does to her physically, psychologically, and existentially. She desperately explores the possible causes such as menopause, fear, traffic noise, and Brexit among others, and heartbreakingly tells of all she has done to get sleep such as seeing doctors, smiling more, counting blessings, and changing behaviors. None come to any effect, as she reports to her unhelpful doctor.

I do these things, they don’t help.
Over time they will.
Over time they haven’t.
I feel unhelpable.
Nobody is unhelpable.
I am.
Nobody is. (p. 139)

Just as Harvey had informed her friend, she takes up other topics in other forms that directly or indirectly relate to her insomnia, and sometimes do not relate at all. Among the various forms are vignettes; thoughts and obsessions; meditations; and a short story. Topics include deaths in the family (including a dog’s); peculiarities of different languages; why so many TV shows have the word “secret” in their titles (she spends “nights spent thinking about this”) (p. 67); what fuels insomnia; how worry, anxiety, and fear differ from one another; writing; time; and the relationships between science and religion, and between reason and faith. Harvey’s background in philosophy shows.

A year on, Harvey discerns a cure for insomnia. Using a metaphor involving swimming against waves and currents or with waves and currents, the cure is to be derived from the “wisdom in knowing that we are sometimes the cause and influencer of our own currents and tides, which we make in otherwise still waters.” She further elaborates on this idea and how it leads to a moment when “you’ll drop each night into sleep without knowing how you once found it impossible” (p. 175).

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Tangles: A Story About Alzheimer's, My Mother, and Me

Leavitt, Sarah

Last Updated: Mar-07-2022

Galbo, MA, MILS, Sebastian

Primary Category: Literature / Nonfiction

Genre: Graphic Memoir

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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One Friday in April

Antrim, Donald

Last Updated: Feb-08-2022

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

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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Nervous System

Meruane, Lina

Last Updated: Dec-13-2021

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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