What She Left Behind

Wiseman, Ellen

Last Updated: Jan-03-2023

Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Izzy is a teenager who has been in foster care for a decade since the age of 7 when her mother was imprisoned and judged insane for having killed her father. She struggles with a desire to cut herself. Her current foster parents, Harry and Peg, seem kindly and engage Izzy in their task to catalogue artifacts from the nearby state asylum that has recently closed.

Izzy is given the journal of Clara, a patient who, at age 18 in 1929, was pregnant by her Italian lover, Bruno. She was committed to the asylum by her angry father. Clara gave birth, but her baby girl was taken from her. She observed how the brutality of the hospital damaged those who did not belong there, eventually provoking the mental illness it purported to treat. With the help of a gravedigger, Bruno planned an escape, but their plan was uncovered, and Bruno died.

Izzy’s own story unfolds as she works her way through the journal, subjected to bullying and tormented by her anxieties. Peg kindly arranges to take Izzy to see her dying birth mother in prison, where she learns that the murder of her father was to prevent him from abusing young Izzy.

Spoiler alert! Izzy learns from an elderly nurse that the asylum director took Clara’s baby for himself and that Clara is still alive. She reunites the mother and child, who is now a grown woman. Izzy joyfully learns that Peg and Harry will formally adopt her.

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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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Wild Boy

Dawson, Jill

Last Updated: Jun-15-2022

Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Young doctor Jean-Marc Itard is serving in the Paris home for deaf-mute children. When a “wild boy” without speech is found near a village in Aveyron, France, Itard accepts the challenge of educating him. Many senior colleagues, including Philippe Pinel, opine that it will be impossible, even when Itard determines that the boy is not deaf. The lad, now named Victor, seems to be about ten years old, but his small size owing to malnutrition may be deceptive; he quickly reaches puberty. Helped by the care and empathy of the home’s housekeeper, Madame Guérin, and Julie, her daughter, Victor learns to perform several domestic tasks but manages to speak only a few words.

His situation is a mystery. Caregivers marvel at how he had been able to survive alone in the woods for several years. They wonder if he ran away from an abusive home, or if he was deliberately abandoned because of his disability. A crisis emerges when a woman appears claiming to be his relative. Itard eventually abandons the effort to educate Victor, but he is allowed to continue living with the Guérins.

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The Problem of Alzheimer’s

Karlawish, Jason

Last Updated: Nov-29-2021

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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Blood in the Water: The Attica Uprising of 1971 and its Legacy

Thompson, Heather Ann

Last Updated: Nov-09-2021

Trachtman, Howard

Primary Category: Literature / Nonfiction

Genre: History

Summary:

1971 seems like a very long time ago. Richard Nixon was President, the Vietnam War was still raging, and China and Russia were the sworn enemies of the United States. Fifty years have passed, and at first blush, the world seems like a different place. Unfortunately, the more things change, the more they can stay the same.

One of the most horrifying events of that year was the prisoner revolt at the Attica State Prison in upstate New York in early September. I did not live in New York at the time and have only a vague recollection of reading the newspaper reports of what happened. But ask anyone living in New York who was at least 15 years old at the time and they will tell you that they have vivid memories of what transpired over the five days from September 9-13. In this extraordinary book, Heather Ann Thompson recounts in all its gory detail the prisoner uprising, the bloody retaking of the prison by state troopers, and the nearly thirty years of investigation and legal wrangling that occurred in its wake.

By the late summer of 1971, there had been prisoner rebellions in state penitentiaries across the country including a nearby high security facility in Auburn NY. There was increasing tension and escalating prisoner protests against the inhumane conditions in all prisons including overcrowded cells, limited access to food and fresh air, and routine brutal treatment at the hands of the correction officers. Finally, Attica prison erupted on September 9 after a minor skirmish between guards and prisoners. The prisoners took 38 hostages and over a thousand prisoners escaped their cells and crowded into the prison yard. They created a communal space to take care of each other that was equipped with meager resources. There was a central meeting area for the leaders of the uprising. They created a human shield around the hostages to protect them from harm.

Over the next four days, there were intense negotiations between prison officials and the prisoners. A team of observers including Tom Wicker was bought in at the request of the prisoners to serve as witnesses and act as potential mediators. Finally, after negotiations fell apart over the prisoner demand for amnesty, without warning, the troopers dropped tear gas cannisters from helicopters and stormed the yard. Tragically, when the dust had settled, 32 prisoners and 11 hostages had been killed by bullets fired by the troopers. This terrifying sequence of events is described in the first third of the book. The remaining part details how prison wardens destroyed critical forensic evidence and collaborated with state politicians up the chain to Governor Nelson Rockefeller’s office to portray the events as a successful suppression of a radical-supported attack against the state. They solicited false testimony and pursued a one-sided prosecution of the prisoners for the murder of one guard and several prisoners. There are too many villains in the story but also some true heroes – a coroner who refused to back down from his post-mortem examination showing that all the victims were killed by gunfire, knowing that only the state troopers had firearms. The prisoners who confronted the legal system, defense lawyers willing to take up the cause of the prisoners, a brave state lawyer who was an essential whistleblower, all were vital in the pursuit of truth. At the end, the justice system failed nearly everyone involved, and Attica Prison remained an important part of the New York State correction system. The only monument is a stone at the entrance to the prison memorializing the hostages who died.

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Everything is Fine

Granata, Vince

Last Updated: Oct-03-2021

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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Face Time

Moore, Lorrie

Last Updated: Oct-28-2020

Galbo, MA, MILS, Sebastian

Primary Category: Literature / Fiction

Genre: Short Story

Summary:

In the lonely glow of her computer, Lorrie Moore’s protagonist FaceTimes her father, who is quarantined in a hospital after contracting the COVID-19 virus following hip surgery. She explains to him the circumstances of the pandemic and names the celebrities and political personages who have tested positive for the virus. Befuddled by hydroxychloroquine, her father passes in and out of hallucination and lucid conversation but jokes when he can despite the side-effects of the “bullshit malaria drugs.” The counterpoint to her sadness for her father is revulsion for the “ghastly” new rituals and habits of indefinite quarantine—the performative antics of Zoom concerts, YouTube binges, bizarre insurance commercials, Bible readings, and social distancing. She is appalled, too, by “well-to-do white families in large suburban homes” that claim “the pandemic for themselves,” families that sanitize grocery bags and order from Amazon and Grubhub. Intermingled with the numbing ennui of quarantine is disgust for the consumerism that thoughtlessly implicates human life, the front-line workers who make these convenient services possible. The protagonist and her sisters coax the hospital staff to comfort their father, play his requested Brahms symphony (any one of the four will do), and give him lemonade, but the “visored hazmatted nurses dressed like beekeepers” are overwhelmed and appear unapproachable, even threatening.

These FaceTime calls become increasingly bewildering to the father. The protagonist’s sister invites her to join a disjointed three-way FaceTime, but the call is interrupted by one of the father’s hydroxychloroquine-induced hallucinations. With “a howl of anguish” and “grimace with agony and sorrow,” he utters German expressions recalled from his war days. The protagonist realizes that her father is “imagining he was a prisoner of war; that was what it must have felt to him—the cruel isolation, the medicine, the lights, the strange machines all around him.” Like the ebbing signal of a satellite in some faraway orbit, contact with her father grows tenuous. For the next FaceTime call, a nurse says her father is asleep. The following day, she waits again for a scheduled FaceTime chat. She phones the hospital to inquire about her father’s missed call but is put on hold, then disconnected. Later, at midnight, the hospital calls to inform her that her father has died.

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Hidden Valley Road

Kolker, Robert

Last Updated: Jun-15-2020

Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Biography

Summary:

The Galvins of Hidden Valley Road, just outside Colorado Springs, appear to be the kind of wholesome, all-American family that others might envy. The tragic fact is that six of the twelve children go on to develop schizophrenia, a situation that is practically unprecedented. In Hidden Valley Road, journalist Robert Kolker gives us the tale of the deterioration of six afflicted children and the traumatization of six healthy ones in an improbable, bucolic setting. As one after the other reaches young adulthood in this “funhouse-mirror reflection of the American dream” (p. xxi) and inexorably succumbs to madness, the family struggles to cope.

In their search for answers, the Galvins’s extraordinary circumstances come to the attention of researchers. Ultimately, although there is no cure, the family makes a contribution through their genes to our understanding of schizophrenia, as a mutation is discovered that is shared by the afflicted children.

Hidden Valley Road follows the travails of this “multiplex schizophrenia” family over so many years that there is a sea change in our understanding of the disease’s origins. At first, it is taken for granted to be the result of a faulty upbringing at the hands of “schizophrenogenic” parents. Later, biological explanations prevail. Finally, a more balanced view is attained, with nature and nurture each thought to play a role.

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Death is But a Dream: Finding Hope and Meaning at Life's End

Mardorossian, Carine; Kerr, Christopher

Last Updated: Mar-17-2020

Galbo, MA, MILS, Sebastian

Primary Category: Literature / Nonfiction — Secondary Category: Literature / Nonfiction

Genre: Criticism

Summary:

In Death is But a Dream, Christopher Kerr, MD, PhD, the Chief Executive Officer and Chief Medical Officer of Hospice & Palliative Care Buffalo, shares his patients’ end-of-life dreams and visions. The content and intensity of these dreams vary, but often center on patients’ transient meetings with predeceased loved ones, offering a deeply spiritual sense of peace during periods of physical suffering.

Using patient interviews, Kerr’s book does not fetishize dream events as ghostly commotions or in terms of pseudo-mysticism, or insist on using a religious framework for their interpretation, explaining rather that bearing witness to and legitimizing end-of-life dream experiences constitute a new ethical imperative in the practice of palliative care: “A true holistic approach to patient care must also honor and facilitate patients’ subjective experiences and allow them to transform the dying process from a story of mere physical decline to one of spiritual ascension” (Kerr 28). Case after case, his research documents that because end-of-life dreams provide patients with a singular emotional and psychological comfort that no palliative medication can simulate, hospice professionals need to validate patient dreams by listening carefully and compassionately.

With this in mind, end-of-life dreams serve as a kind of counter-narrative to dominant cultural understandings and representations of human experiences in hospice, specifically stereotypes of terminally ill individuals as being incapable of meaningful communication, creativity, and understanding. Kerr’s patients’ narratives reveal that end-of-life dreams and visions are not trauma-inducing experiences or instances of religious prophecy, but “help reframe dying in a way that is not about last words and lost love but about strengthened selves and unbreakable bonds across lives” (142).

Death is But a Dream upends medical research, or certain “limitations of science,” that oversimplifies end-of-life dreams by attributing them to neurological deterioration, oxygen deprivation, and the side effects of pain management medication (11). The general lack of rigorous, serious-minded research in end-of-life dream experiences is inseparable, in part, from institutionalized medicine’s “inability to see dying as anything but a failure” which has produced a healthcare system that “reflects a limited view of the totality of the dying experience” (7). The patient accounts that Kerr documents, however, reveal an undeniable dimension of human experience at life’s end whose complexities may be well beyond the reaches of full scientific understanding. End-of-life dreams seem to be part of an elaborate system of compensation (to borrow a term used by Siddhartha Mukherjee), as the mind works overtime to activate and animate certain memories to diminish the physical realities of dying. “There is an adaptation—substantive, spiritual yet cognitively meaningful,” writes Kerr, “a mechanism through which the patient can emerge from the dying process with a positive psychological change” (69). Indeed, the mystery of end-of-life dreams—their visions of loved ones; of seeking forgiveness, healing, and understanding within weeks, sometimes days, of one’s death; of comforting apparitions and visitations—points to a miraculous capacity within the human heart that eases the life-to-death transition.

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The Edge of Every Day

Sardy, Marin

Last Updated: Jan-25-2020

Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The Edge of Every Day is the memoir of a woman who comes from a “multiplex” family, in which schizophrenia is manifested in successive generations.

The book consists of a series of essays. Some, on topics ranging from gymnastics to building altars, were first published independently and do not appear (at least at first glance) to be linked. The choppy effect this produces speaks to the disorganized thinking that psychotic persons experience. Other essays propel the tragic narrative of family members slipping into psychosis. At the age of ten, the author Marin Sardy, watches as the “shapeless thief” of schizophrenia steals her mother’s personality away. Later, as she reaches her thirties, she witnesses her younger brother succumb to an even more pernicious illness.

Despite Sardy’s mother’s conspicuous symptoms, (she advises her daughter to move to Pluto and informs her that her father has been swept away in a tsunami and replaced by another man), she functions just well enough to avoid being compelled to accept treatment. Thus, no one can stop her from going through a large inheritance and becoming destitute.

Sardy’s brother Tom suffers his first psychotic break in his 20’s and then rapidly deteriorates. He repeatedly “cheeks” his meds and falls through the cracks of Anchorage’s mental health system. The author and her family scour the streets, hoping to lure him inside for a shower or hot meal. As the weather worsens, they can only hope he will land in prison if it means not being exposed to the Alaskan elements. Ultimately, the young man, who once sailed through college with A’s, commits suicide in the bathroom of a psychiatric facility.

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