LitMed: Literature Arts Medicine Database

The Best Minds

Rosen, Jonathan

Last Updated: Jun-26-2023

Glass, Guy

Primary Category: Literature / Nonfiction

Summary:

The Best Minds is the true story of the lifelong friendship between the author, Jonathan Rosen, and Michael Laudor. To an extent, as children and young adults, Rosen lives in his brilliant friend’s shadow. While both attend Yale, it is Laudor who graduates summa cum laude in three years. Laudor applies and is admitted to all the top law schools, and, at twenty-four, seems to be destined for great things. Then, a switch flips. His parents have been replaced by Nazis, or so he claims. He roams the house with a kitchen knife. His mother locks herself in the bathroom and calls the police. Rosen gets a call. His friend is in a psychiatric hospital. He has been diagnosed with Paranoid Schizophrenia.

After being stabilized on antipsychotics, Laudor is discharged to a halfway house and begins to attend a day hospital. “Painfully aware of where he had been and where he ought to be” (p.243), he is advised to get a job as a cashier at Macy’s. Instead, he makes the extraordinary decision to matriculate at Yale Law School, whose acceptance he has deferred. At school, he wakes up every morning believing his room is on fire, “paralyzed with fear until his father called and told him the flames weren’t real” (p.277). Incredibly, with the encouragement of the dean and faculty, who “create a day hospital” (p.262) for Laudor and his classmates who read, edit, and type his work, he manages to graduate.

Laudor looks for a job, but determined to be open about his illness, seems unemployable. Nevertheless, he is in a unique position to be a powerful advocate. He is interviewed by the New York Times and is portrayed in glowing terms in a widely circulated article. There are bidding wars among several publishers for a book he is to write. Leonardo DiCaprio expresses interest in playing him in a film. He receives a large advance which obviates the need for employment. For the director of the National Alliance on Mental Illness (NAMI) this is the perfect “opportunity to give the world a positive image of someone with serious mental illness” (p.406).

Unfortunately, Laudor is not compliant with his medication. His personal care and his thought processes deteriorate. However, since he knows how to “avoid the buzzwords that could trip a psychiatric alarm” (p.423) he evades treatment. Eventually he spirals into full-blown psychosis, and convinced his fiancée has been replaced by a wind-up doll, he stabs her to death.

Laudor is considered unfit to stand trial and is committed to a forensic psychiatric facility. His book is never written, and the film director who was to tell his story instead makes A Beautiful Mind, which wins many awards. After years of estrangement, Jonathan Rosen begins to visit his childhood friend again. Laudor remains institutionalized to the present day.

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Tomorrow and Tomorrow and Tomorrow

Zevin, Gabrielle

Last Updated: Dec-12-2022

Trachtman, Howard

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Among the many binaries that can be used to describe people, an easily observable one is how seriously they take the games they play. There are those who play basketball or Scrabble to simply relax and enjoy the camaraderie of their playmates. And then there are others for whom games are invested with considerably more significance, where winning in rotisserie baseball or a golf match becomes a statement about their core values, the meaning of life itself. Gabrielle Zevin’s wonderfully engaging novel, Tomorrow and Tomorrow and Tomorrow, is dedicated to those who proudly include themselves in the latter category.

The novel spans nearly thirty years and centers on three exquisitely drawn characters who are brilliant and appealing and whose raison d’etre is to design and promote the best computer games. Sam and Sadie are intellectual outliers from vastly different backgrounds. Sam’s Korean single parent mother is an actress wannabe, and he is actually raised by loving grandparents who own a pizza store in Koreatown in Los Angeles, while Sadie grows up in a supportive family of high achieving professionals. They meet by chance while Sadie is in junior high school. As part of her required community service, she visits Sam while he is hospitalized to treat a horrific leg injury (I am leaving out crucial details about how that happened). Sadie is drawn to Sam – her more than 900 hours of visits break the record of service time donated – and he in turn is able to overcome the chronic pain he endures and to open himself up to someone else.

A genuine bond is forged between the young adolescents that resurfaces a few years later when they bump into each other unexpectedly in a Cambridge subway station. Sam is a student at Harvard and Sadie is studying at MIT. They are both computer geniuses and in the early 1990s there is no better way to leverage their knowledge than to design innovative and complicated computer games. They are able to program games that combine literary structure, musical background, and state-of-the-art color graphics in the service of a narrative environment that challenges the intelligence and sustains the interest of the player. Joined by a common friend, Marx Watanabe, Sam’s roommate at Harvard, who becomes their devoted and creative producer, they develop a game called Ichigo, a tale of a child lost at sea who must find his/her (a key part of the game) way home. The game is based on the famous wood block print, “The Great Wave” by Hokusai and becomes an international bestseller. They are vaulted into the world of the rich and famous.

The novel chronicles their professional struggles over the following decade to maintain the same high level of creativity and mass appeal. Conflicts arise about assigning credit for their creations and dividing up the public accolades and recognition. There are the expected strains that are bound to develop in such a closely knit team of creative collaborators who are working 24-hour days to meet unrealistic production deadlines. And of course, there are complicated interpersonal relationships that develop that in such a high-pressure workplace. There is true joy, but it is always mixed with intense feelings of envy and nostalgia for simpler times. Other partners and love interests enter the story. But among this intriguing cast of characters, Sam is singularly complex, and his leg injury and chronic disability are crucial elements in the plot; he suffers from severe phantom limb pain and ultimately he is forced to have his damaged lower leg amputated. How he copes with his disability, real and imagined, alters the arc of the story to a significant degree. Sam cannot escape his feelings of being an outsider, even as he feels himself drawn to Sadie. The imaginary computer game world leaks into reality. Violence dramatically intervenes in the story and ineradicably alters the course of events (no spoiler alert). The novel that focuses on the creation of a virtual reality has a lived-in texture and fullness. I anticipate that most readers will find the ending to be satisfying, an exquisite expression of the complexity of human fate and interpersonal relationships.

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Vanished in Hiawatha: The Story of the Canton Asylum for Insane Indians

Joinson, Carla

Last Updated: Aug-08-2022

Galbo, MA, MILS, Sebastian

Primary Category: Literature / Nonfiction

Genre: History of Medicine

Summary:

In 1902, an unusual structure was erected on South Dakota’s windswept prairies. It was not a silo, farmhouse, or barn—buildings that would be perfectly commonplace in that corner of the state. This conspicuously odd edifice, a “two-story building, with its jasper granite foundations,” was called the Canton Asylum for Insane Indians, a first-of-its-kind and federally managed institution based outside of Canton, South Dakota (Joinson 24). The asylum, which operated from 1902 to 1934, was designed to incarcerate and treat Indigenous peoples deemed ‘mad’ by powerful political authorities, such as reservation superintendents and the Bureau of Indian Affairs. According to the historian and disability studies scholar, Susan Burch, the facility “ultimately held four hundred men, women, and children from seventeen states and nearly fifty tribal nations.”

In Vanished in Hiawatha: The Story of the Canton Asylum for Insane Indians, Carla Joinson provides an incisive institutional history of the Canton Asylum, examining the political motivations for its establishment, its different periods of (mis)management, and, ultimately, its demise in the early 1930s due to inspection findings and Indigenous affairs advocacy spurred by John Collier. In writing the book, Joinson seeks to answer her chief research question: “why an institution like this asylum could exist for so many years, and what made it tick as a viable part of the Interior Department” (2). Her research explores the mechanics of institutional longevity, specifically how, despite government inspection reports that revealed appalling evidence of neglect and abuse, the facility remained in operation for over three decades. Joinson’s book also corroborates the staggering fact that many of the asylum’s patients were not, in fact, ‘insane,’ but sent to the institution only so that the federal government could detain and surveil people who may have experienced difficulties with reservation authorities back home. Other Indigenous peoples, such as those with epilepsy and ‘feeblemindedness,’ were also deemed ‘mad’ and in need of medical detention. Many instances of abuse are chronicled: unhygienic conditions, patient restraint, fraudulent diagnoses and misdiagnoses, suicide, and failure to quarantine tubercular patients. Joinson also unearths decades-long dysfunction among the facility’s administration: staff backbiting and high turnover rates, lack of medical treatment, poor medical training and recordkeeping, and refusal to employ translators to communicate with Indigenous patients and understand their different cultures. Vanished in Hiawatha documents that Canton’s patients suffered years of neglect, and those who would have potentially benefitted from psychiatric treatment never received it because the facility was little more than a rural prison for unwanted, troublesome, and chronically ill Indigenous peoples.

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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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Queen of the Sugarhouse

Studer, Constance

Last Updated: Sep-14-2021

Davis, Cortney

Primary Category: Literature / Fiction

Genre: Collection (Short Stories)

Summary:

Constance Studer's engaging "Queen of the Sugarhouse" contains nine short stories ranging in length from 9 to 21 pages, each story complete in itself. Her nursing expertise is evident in several stories, including "Mercy" (page 3), "Shift" (page 77), "The Isolation Room" (page 95), "Testament" (page 112), "Special Needs" (page 122), and the title story, "Queen of the Sugarhouse" (page 138).

While many of the stories specifically revolve around medicine or nursing, others examine a variety of issues, often with healthcare peripherally involved.

In "Shelter" (page 21), a homeless vet who served in the Gulf War struggles with PTSD, the difficulty of obtaining permanent disability, the inability to find work or a suitable living space, and his quest to find treatment for his many physical problems after chemical exposure during Desert Storm. He sees a different doctor at each appointment and no one truly helps him. "Finding today's meal or bed or beer takes all my energy, leaving me nothing left over for thinking about next week. I am a veteran and can no longer vote because I have no home" (page 27). Studer takes us into this man's life and struggles with clarity and empathy.

"Think Beauty" (page 37) questions what makes a woman beautiful (or believe she is beautiful) against a back story examining friendship and all that entails. "This Middle Kingdom" (page 58) tells a story that encompasses both the heroics of a ski team that saves skiers in distress and how difficult it can be to feel compassion for those who end up in trouble because they flaunt the rules or advice of the experts--a theme quite relevant for our times.

The book's opening story, "Mercy" (page 3) explores a nurse's various reactions after she makes an error while dispensing medication. As in every story in the collection, multiple themes weave in and out, driven by a character's decision or dilemma. In "Mercy," we see how medical personnel can truly care for and worry about their patients; how even a small error may cause a nurse deep distress, both for her patient and for her future; how the nursing shortage leads to burnout; and how "real life" continues on in the background, in this case, a passionate love affair that leads both to marriage and to grief. "Grief is a train that doesn't run on anyone else's schedule" (page 15).

"Shift" (page 76) tells of a physician who is devoted to his work and his patients in the ER ("His white coat flaps, stethoscope bounces as the doctor runs, its weight a comfort, like a rosary for a priest" page 76) while his wife feels neglected. The story moves between the chaos of the ER and the story of his marriage, a love that began when the doctor was in medical school. After his wife leaves him, the doctor sleeps with the lights on, hoping she will return. But whenever he closes his eyes, he only sees scenes from the ER. The story ends with words the doctor has said so often to a patient: "Please sir, lie still. I'm going to numb you now. Hang on, man. Soon the pain will be gone" (page 93).

"The Isolation Room" (page 94) follows a woman, a writer, who has been, she believes, placed unnecessarily and mistakenly in a psychiatric ward. As we read, we wonder if this woman is truly afflicted with a mental disorder or if she is simply extremely imaginative, perhaps betrayed by her husband who arranged for her admission. The main character is likeable, often seemingly sensible, perhaps incredibly but differently talented: "Maybe to be out of her mind meant she'd finally make the leap from logical to intuitive, into her true skin, a room all her own ... a writer, that teller of lies, pursuer of truth by means other than logical, that follower of breadcrumbs through the scary forest wherever they lead?" (page 97).

"Testament" (page 112) follows a student nurse in her first month of training and touches on the care of difficult patients, their various religious beliefs, and how healthcare providers' families are not immune to illness. "Special Needs" (page 121) follows Maria, a waitress with an unexpected pregnancy and wheelchair confined brother. The title story, "Queen of the Sugarhouse" (page 137) is a poignant examination of breast cancer; the terrible trial of chemo and radiation; the complex relationship between the suffering mother and her daughter, a nurse; and how life changes when the drama of uneasy but genuine love and relationship ends. "I think I hear Mama's voice, then realize it's only the sound of water over rocks. Tears are this river carrying me forward" (page 153).

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Crip Camp: A Disability Revolution

Newnham , Nicole; LeBrecht, James

Last Updated: Jun-21-2021

Schilling, Carol

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Crip Camp: A Disability Revolution is an exuberant film by and about people who have been marginalized on screen and in their lives. It opens with black and white archival footage of Camp Jened, a quirky, free-spirited, counter-culture summer camp for disabled teenagers in New York’s Catskilll Mountains. One camper called it a utopia. The second and longer part of the film follows several former campers into their adult lives. They become parents, spouses, professionals, and disability rights activists at a crucial historic moment for disability legislation. Both parts of the film propose that the liberty and solidarity experienced at Jened emboldened several of the campers to seek opportunity and equality, for themselves and others, in the world beyond their camp.

Located near Woodstock, geographically and culturally, Jened offered a space free from the discrimination the summer residents encountered elsewhere. Campers could engage in uninhibited physical activities, uncensored storytelling, self-governance, mutual caretaking, real friendships, irreverent insider humor, romance, and fun. One powerful scene allows viewers to overhear campers with diverse disabilities share common experiences: being disrespected or ignored at school, overly protected at home, isolated everywhere. Another tracks the campers’ hilarity and pride over an outbreak of “crabs.” One camper declares his counselor’s demonstration of how to kiss, “Best physical therapy ever!”

While the film’s co-director, former camper Jim Lebrecht, narrates the film, Judy Huemann is its political and moral center. A wheelchair user, she rose from camper to counselor. Huemann was revered around camp for successfully suing the New York City Department of Education for the right to teach. She and several post-campers reunited in Berkeley, California, where they became involved in the Independent Living Movement. An astute leader, Heumann is represented as central to a remarkable 25-day sit-in at the San Francisco Department of Health, Education and Welfare (HEW) offices in 1977. She and her disabled colleagues risked their health and their lives—they slept on the floor and improvised medical necessities—to convince HEW to approve regulations essential for enforcing the anti-discrimination section of the 1973 Rehabilitation Act. The scene of Heumann’s standoff with the HEW representative is unforgettable. As are the deliveries of food, supplies, and solidarity that the Black Panthers and other marginalized groups in San Francisco provided daily. Other archival footage, including of Heumann and demonstrators stopping traffic in New York City to demand accessible taxis and of protestors abandoning their wheelchairs to pull themselves up the steps of the nation’s Capitol, are startling images of the struggle to secure disability civil rights in the United States. Recently filmed interviews with several of the former campers affirm that, despite the work toward disability justice that remains, they live fuller, more vibrant lives as a result of their experiences at Jened and the legislation they insisted on.

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Pain Studies

Olstein, Lisa

Last Updated: Jun-10-2020

Carter, III, Albert Howard

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

“All pain is simple” reads the opening sentence of this unusual and striking book. The next sentence reads, “And all pain is complex.” These two sentences foreshadow many puzzles to come: how do we live between chaos and control? Why can’t doctors figure migraines out? Why don’t they agree on a treatment for a particular patient? Olstein is a poet and long-term migraine sufferer. Her book offers many observations about pain, and her attempts to define it, describe it, and plumb its nature through language. There is no linear narrative or argument, rather 38 very brief chapters—usually three to five pages—and many of these could be read in a different order.

Olstein uses the terms “studies” and “research” for her efforts to capture pain, to explain it, and to understand the cause(s) of her disease. Her mother had migraines; women have three times the rate of men; she had a childhood head injury. Do any of these factors explain her disease? No. And what treatments work? She lists some 50 drugs/supplements/activities she has tried to deal with her illness. None of these have worked in a definitive way. Further, she lists some 30 side-effects she has experienced from these various treatments (pp. 74-75). She has had multiple migraines, one lasting three months, but she also says drugs keep pain at bay: “mostly the medication does work” (p 90).

Some disparate figures help her focus her inquiry: Joan of Arc (possibly a migraine sufferer), the TV character Dr. Gregory House (racked with chronic pain, he is an opioid addict), Virginia Woolf, and Hildegard of Bingen (possibly a migraine sufferer). Also ancient writers such as Lucretius, Pliny the Elder, and Antiphon the Sophist, and contemporaries from different fields, such as mathematics and neurology. Also she refers to poems by Emily Dickinson, Elizabeth Bishop, and C. D. Wright, as well as to an article on gendered literature by Siri Hustvedt.

Largely written during a writing residency, these are incisive notes plus associations as she plumbs not only her illness but also her responses—as poet, as thinker, as searcher for healing—to the bizarre, long, difficult path of her migraines. (We have only brief mentions of her personal and family life.) While she refers to some scientific literature, it is more often that her insights come from artistic fields such a literature, sculpture, drama, and popular music. She writes that her work with a therapist over a dozen years has been helpful to her.

There is no conclusion…nor can there be. Her illness, treatment, and writing are all works in progress. Patients are different; doctors are different; science evolves. In their many forms and presentations, migraines are mysterious and complex, as this book creatively and powerfully shows. Olstein writes, “The beauty, the love, is in what we perceive” (p. 144). We may take this observation as the guiding principle for the book.

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The Soul of Care: The Moral Education of A Husband and a Doctor

Kleinman, Arthur

Last Updated: Feb-10-2020

Carter, III, Albert Howard

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

A dramatic prologue depicts Joan Kleinman screaming and hitting her husband Arthur in bed. She is ill with Alzheimer’s disease and does not, for that moment, recognize him. The following chapters provide a long flashback, beginning with Arthur’s family background, his youth as a tough street kid in Brooklyn, his medical education, and his marriage to Joan. We learn of their work in China, travels, and professional success. Arthur gradually realizes that the US health care system has become “a rapidly fragmenting and increasingly chaotic and dysfunctional non-system” (p. 126). Further, he sees a reductive focus on patients as mere biological entities, ignoring their personal, familial, and cultural natures. As a result, “Caregiving in medicine has gone from bad to worse.”

Joan suffers from an atypical kind of Alzheimer’s that increased over “that dismal ten years” (p. 156) with Arthur providing care to her, at cost to himself. There is no home health aide, no team approach with doctors, indeed no wider interest in her care other than the state of her diseased brain. Kleinman vividly describes the toll on her and on him.

Kleinman is aware of the privilege he has as a Harvard doctor, well known for his psychiatric work, his teaching and writing, and his wealth—in contrast to other patients and families. Some patients go bankrupt from medical bills.

Visits to nursing homes reveal a wide range of social conditions, contexts, and levels of care; the best have a sense of “moral care” (p. 200). Joan’s final days are hard. Supportive family members agree to her living will and healthcare proxy for morphine pain control only. She dies, apparently “at peace” (p. 232).

In the last pages Kleinman introduces the notion of “soul” as “essential human interactions” (p. 238). He discusses some of the limits of medicine (see paradoxes below) but also praises local efforts to improve humane care, such as team approaches, uses of narrative medicine, and medical/health humanities programs.

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See You On the Other Side

Wong, Matthew

Last Updated: Nov-04-2019

Lam, MD, Gretl

Primary Category: Visual Arts / Painting/Drawing

Genre: Painting

Strange Relation—A memoir of marriage, dementia, and poetry

Hadas, Rachel

Last Updated: Aug-18-2019

Ratzan, Richard M.

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Strange Relation is a memoir of the terminal illness of George Edwards, a composer and professor of music at Columbia University, written by Rachel Hadas, his wife, a well- known poet and herself a professor of English at Rutgers University. Hadas begins with the insidious onset of Edwards's dementia, which is eventually diagnosed as frontotemporal dementia, a slow neurodegenerative disease characterized by a progressive paucity - and then absence - of communication, especially speech. She then continues with their meetings with physicians, especially neurologists, social workers, support groups and eventually nursing home personnel, recording, often in the form of her poems, her thoughts and reactions at the time.

The book consists of short chapters, more or less chronological, with occasional flashbacks to earlier periods in her life or their marriage. In addition to her poems, there are ubiquitous references to literature, many of them familiar, as well as not so familiar illness narratives by patients and relatives, especially those involving dementia and bereavement. George died in 2011, the year of the publication of this book, after 33 years of marriage to Ms. Hadas.

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