Showing 1 - 10 of 37 annotations tagged with the keyword "Epilepsy"

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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Annotated by:
Coulehan, Jack

Primary Category: Literature / Nonfiction

Genre: History of Medicine

Summary:

The Invention of Medicine is both a scholarly history of early Greek medicine and a compelling mystery story. The “From Homer to Hippocrates” discussion (about 70 pages) is merely a prelude to the author’s main project, which is a careful analysis of the books attributed to Hippocrates of Cos. As a group, they have been associated with Hippocrates at least since the scholar Baccheios of Alexandra, writing in the 280s BCE, attributed them to him. The Roman physician Galen (about 170 CE) considered them products of a Hippocratic “school,” but believed they were written by many different authors, including in some cases, the great Hippocrates himself.  

The book’s highpoint is the author’s carefully reasoned hypothesis that the historical Hippocrates wrote the texts we now know as books 1 and 3 of the Epidemics, based on his practice experience in Thasos between 471 and 467 BCE. Other parts of the Epidemics were written by physicians up to several generations later who emulated Hippocrates’ naturalistic approach. The works identified as the “Hippocratic corpus” were grouped together as early as the 280s BCE as representing the school of Hippocrates because of their naturalistic, pragmatic, and ethical contents,  

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Parenthesis

Durand, Élodie

Last Updated: Apr-23-2021
Annotated by:
Miksanek, Tony

Primary Category: Literature / Nonfiction

Genre: Graphic Memoir

Summary:

Judith, a French woman in her early twenties, experiences "spells" - episodes of shaking, staring, and sudden memory loss. These spells occur daily and her behavior becomes erratic. She visits a neurologist. He diagnoses epileptic seizures and prescribes medication. Yet the convulsions continue so Judith's drug dose is upped and an MRI of the brain is done.

The MRI scan finds a small tumor that appears inoperable. A brain biopsy reveals an astrocytoma. Judith's life now revolves around her illness and the medical monitoring of it. Time feels distorted, and she likens her seizures to "a little death." Everyday life becomes blurred. She is advised to see a neuropsychiatrist. Her parents worry about her constantly.

Eventually Judith is referred for Gamma Knife radiosurgery. Eighteen months after the procedure is completed, only a tiny scar at the site of the tumor remains. Three years following the treatment, the seizures are gone. She rediscovers the joy of life and embraces a hopeful future.

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Electricity

Fisher, Sukey; Higgins, Bryn

Last Updated: Jan-14-2019
Annotated by:
Teagarden, J. Russell

Primary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

Lily O’Connor is 30 something and working at a seaside arcade in northeastern England. She inherits some money from her mother’s small estate and wants to give her brother Michael his share. But, Lily lost track of Michael during their childhood after they were placed in separate new homes to protect them from the severe abuse their mother was inflicting on them. Michael has become a ne’er-do-well in adulthood, and so Lily’s search for him takes her through the dark alleys of London and puts her in the company of its dodgier inhabitants. 

A bigger challenge to Lily in her search and in her life more generally is her epilepsy. How she experiences epilepsy forms the more interesting and dramatic elements of the story. We see Lily have several seizures  in a variety of scenarios: before a date, on the subway, at a friend’s house, in a hotel room, and in a nightclub. We see how Lily senses them coming on as she says to herself:

Here’s the breath, 
here’s the breeze, 
here’s the shimmer…and I’m falling down the rabbit hole.

We see the ground in front of her becoming fuzzy but closer, then what looks to be her hand reaching out in front of her to lay a sweater down on the ground where she thinks she will land, and then the ground getting fuzzier still as she hits it. From the ground, we see that she can still make out some people bending down to help and others averting their gazes. As Lily loses all focus, hallucinations start, and we see her body floating among patterns of electrical bursts as she experiences them. Next we hear her scream before all goes dark and violent shaking starts. As she regains consciousness, we see what she sees, blurry at first and then as her surroundings come into focus. It may be the inside of an ambulance, a hospital room, or her apartment, where in anticipation of that possibility, she has painted on her walls: Don’t Worry Lily Home Bed Sleep SAFE NOW

As Lily goes into recovery after a seizure, the director takes us from Lily’s point of view to the point of view of bystanders. We see that as a result of these seizures, Lily often sustains bone fractures, lacerations, abrasions, puncture wounds, and bruises among other injuries. She goes about cleaning herself up in a manner that suggests a routine, something she expects. Nevertheless, the loss of time frustrates her.

I just lost 2 days. Chop it up. Chop it out of my life. All the outtakes. What would they look like if you put them all together.

Lily’s adaptation to her seizures and their consequences vexes the physicians she consults, which she does only when her medications are stolen and she needs new prescriptions, and when she is taken to the hospital after particularly bad seizures. These physicians want to get Lily onto newer and presumably better medications. She resists, saying to one of them,

All I want is my old meds back.You know when my scripts change, it messes with my head every time. If you wanna know why I’ve stayed on the old meds, it’s ‘cause I know who I am…You have no idea how new drugs change me, they make me feel like a ghost. Words fall out of my mouth like vomit. My brain, a lump of cold meat. Nah, I’m not doing it.

She decides to forgo all medications if she must move to a new regimen, but it doesn’t go well. Eventually she capitulates, adapts to new medications, and goes on with her life, or as she says, “Thrash, get up, get on with it.”

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A Mind Unraveled: A Memoir

Eichenwald, Kurt

Last Updated: Jan-02-2019
Annotated by:
Miksanek, Tony

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Kurt Eichenwald shares his experiences living with epilepsy in an electrifying narrative. Beginning with staring spells as a child and then later on generalized convulsions with loss of consciousness, he experiences as many as 4 seizures a week between the ages of 18 to 30. After that, the seizures become milder and less frequent. Coincidentally, his wife, father, and older brother are physicians and his mother a nurse.

Eichenwald describes his encounters with multiple neurologists, the best of them being Dr. Naarden. Unfortunately, other health professionals are portrayed as incompetent, careless, lacking empathy, or even unscrupulous. Multiple mishaps with prescribed anticonvulsant medications are chronicled – drug side effects, toxic levels of medicines, and a bout of bone marrow suppression. He suffers broken ribs, cuts and wounds, burns, and is even blanketed by deep snow due to seizures.

Eichenwald acknowledges the toll that epilepsy exacts on roommates, friends, and family. He admits to lots of fear and guilt. At one point, he seriously considers suicide by overdosing. Everyday life is hardly ever ordinary: “Now I was scared every day, checking where I stood for dangers, wondering when consciousness would disappear” (p157). A large section of his account details the discrimination he encounters at Swarthmore College in Pennsylvania in the early 1980’s. The school dismisses him because of his uncontrolled epilepsy. He successfully fights their decision and returns to graduate. Obtaining and holding a job is complicated by his illness, but Eichenwald becomes a journalist who works for the New York Times.




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Is It All in Your Head?

O'Sullivan, Suzanne

Last Updated: Mar-17-2017
Annotated by:
Teagarden, J. Russell

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

Suzanne O’Sullivan is a neurologist in the British National Health Service. She has a particular interest in psychosomatic illnesses, and in this book, she covers what she has learned about them. O’Sullivan provides these learnings mostly from clinical experience rather than as findings from empiric studies on psychosomatic illnesses.   

Each chapter is built around one or more case studies that focus on particular psychosomatic illnesses, and include historical perspectives and various theories that might explain why they occur.  

The cases O’Sullivan uses presented themselves as seizures, paralysis, urinary tract troubles, generalized and localized pain, gastrointestinal problems, fatigue, blindness, and dystonia. Patients sometimes came to her with pre-determined diagnoses such as epilepsy, Lyme disease, chronic fatigue syndrome, myalgic encephalomyelitis, and fibromyalgia among others. O’Sullivan is emphatic that psychosomatic illnesses are not just any presentation of illness that cannot be linked to a pathological basis. Psychosomatic illnesses arise from “the subconscious mind [that] reproduces symptoms that make sense to the individual’s understanding of how a disease behaves.” (p. 83) Illness presentations that are feigned or self-inflicted (e.g., Munchausen’s syndrome) are not psychosomatic illnesses in O’Sullivan’s view.
 

Each chapter delves into some particular aspect of psychosomatic illness relevant to the case study. These include history (e.g., role of the uterus in hysteria), mechanisms at work (e.g., conversion reactions, dissociation), triggers (e.g., stress, loss, personality traits), factors (e.g., previous illness experiences), illness behavior disorders (e.g., associating illness to benign physical sensations), and the higher incidence seen among females. Though O’Sullivan teases out various characteristics and workings of psychosomatic illnesses, she admits that they remain vexing to clinicians because, “almost any function of the body can be affected in almost any way.” (p. 170)

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Annotated by:
Miksanek, Tony

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

A bicycling, bee-keeping, British neurosurgeon approaching the end of his professional career recalls some distinctive patients, surgical triumphs as well as notable failures, difficult decisions, and mistakes. Nearly thirty years of a busy neurosurgical practice are distilled into a collection of linked stories throbbing with drama - both the flamboyant kind and the softly simmering type.

Most chapters are titled after a medical condition (exceptions are "Hubris" and "Melodrama"). Some of the headings are familiar - Trauma, Infarct, Aneurysm, Meningioma. Other chapter titles flaunt delicious medical terminology that mingles the mysterious and the poetic with nomenclature such as Angor animi, Neurotmesis, Photopsia, and Anaesthesia dolorosa.

Included are riveting accounts of both mundane and seemingly miraculous patient outcomes. One success story involves a pregnant woman losing her sight due to a brain tumor that compresses the optic nerves. Her vision is restored with an operation performed by the author. Her baby is born healthy too. But tales of failure and loss - malignant glioblastomas that are invulnerable to any treatment, operative calamities including bleeding of the brain, paralysis, and stroke - are tragically common. The author describes his humanitarian work in the Ukraine. He admits his aggravation with hospital bureaucracy and is frequently frustrated by England's National Health Service.

Sometimes the shoe falls on the other foot, and the doctor learns what it is to be a patient. He suffers a retinal detachment. He falls down some stairs and fractures his leg. His mother succumbs to metastatic breast cancer. His three month old son requires surgery for a benign brain tumor.

As his career winds down, the author grows increasingly philosophical. He acknowledges his diminishing professional detachment, his fading fear of failure, and his less-hardened self. He becomes a sort of vessel for patients to empty their misery into. He is cognizant of the painful privilege it is to be a doctor.

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Summary:

The author is a practicing neurosurgeon, one of only two hundred or so women in this specialty which numbers about 4,500. She was the first woman to be admitted to her neurosurgery residency program. Her father was a surgeon and she was definitely influenced by him and says that, as the oldest of four children, it was always expected that she would become a doctor; but she didn't decide for sure until partway through her second year of college.

Once in medical school her decision for neurosurgery as her specialty came very easily. Oliver Sacks's writing had a significant influence on her decision. She was also influenced by her college sweetheart who became her husband and who also chose to train as a neurosurgeon. He is not practicing now and they do not have children.

Her description of her long years of training are interestingly related with many individual patient stories and also many descriptions of her teachers and peers. She takes time to describe how she views the specialty itself and its power structure and all that entails. Among the interesting chapters are two about her research years, one at the center for cognitive brain imaging at Carnegie-Mellon and one as a fellow in Epilepsy Surgery. The author was fascinated with the complexity of brain function and its relation to anatomical structure with which she was much more familiar.

Firlik found that she loved "life on the learning curve" and that her curiosity was broad. About her last year as Chief Resident she said "I have had my hand in saving lives and I have had my hand in helping to end them: I'm not talking about murder, of course. I am talking about helping people die" (227). She was able to write this book because she kept a journal during her training.

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Annotated by:
Poirier, Suzanne

Primary Category: Literature / Nonfiction

Genre: Investigative Journalism

Summary:

When Lia Lee's sister slammed the front door to their Merced, California, apartment, Lia experienced her first in several years of increasingly severe seizures. The Lee family knew that the noise had awakened a dab, an evil spirit who stole Lia's soul. They also knew, in the midst of their grief for their infant daughter, that people suffering from "the spirit catches you and you fall down" often grew up to be healers in their Hmong culture.

Not surprisingly, the physicians and other health professionals who worked with Lia and her parents over the next seven-plus years did not share this diagnosis--most of them did not even know about it. Fadiman melds her story of Lia, the Lees, the family's physicians and social workers, and countless other people who enter the Lees' life (usually uninvited and unwelcome) with the long history of the Hmong people, their religion and culture, and their more recent lives as refugees from war in Laos and Cambodia (and the troubled history of their relationship to the U.S. military system).

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Illness as Narrative

Jurecic, Ann

Last Updated: Jul-03-2012
Annotated by:
Schilling, Carol

Primary Category: Literature / Nonfiction

Genre: Criticism

Summary:

In Illness as Narrative, Ann Jurecic thoughtfully examines the unruly questions that personal accounts of illness pose to literary studies: What is the role of criticism in responding to literature about suffering?  Does the shared vulnerability of living in a body, which stories of illness intimately expose, justify empathic readings?   What is the place of skepticism in responding to stories of suffering?  Does whether or how we read illness narratives matter?  Jurecic's questions entice discussion at an interesting cultural moment.  The numbers of memoirs and essays about illnessand their inclusion in medical school and other humanities coursesmultiplied from the later decades of the 20th century to the present.   However, their increase, and their potential to encourage empathic readings, coincided with dominant literary theories that advocated vigorously skeptical, error-seeking responses to texts and their authors.  Jurecic reminds us that Paul Ricoeur called such responses "the hermeneutics of suspicion" (3). 

Jurecic's astutely researched, nuanced answers to those questions propose a corrective to the extreme skepticism of "disembodied criticism." Such criticism, she claims, dismisses testimonial writing from "a position of distance and privilege."  But her answers also affirm that intellectually "rigorous" responses to texts are central to the critical humanities (15).  To further her position, she offers attentive readings of accounts of illness by Virginia Woolf, Reynolds Price, and Jean-Dominique Bauby, as well as the theoretical writing of literary and other scholars.  For instance, Jurecic speculates that the condition of a reader's body aligns with his or her responses to texts.  In a chapter called "Theory's Aging Body," she observes that as skeptical scholarly readers ageStephen Greenblatt, Michel Foucault, Judith Butlerthey have turned their attention to "illness, vulnerability, and mortality" (93).  Jurecic also suggests that a function of criticism is to uncover the cultural conditions that memoirs and essays about illness respond to.  Living "at risk" is a recent one.  In stories of living with the risk of experiencing a particular illness in the future, potential patients create narratives of uncertainty to discover the "personal meaning of the impersonal statistics" that medical research now regularly delivers (18). 

 Jurecic also reflects on the ways theorists have understood the possibilities of representing and responding to pain in the varied approaches of philosophers Elaine Scarry, Martha Nussbaum, and Richard Rorty and of anthropologists Jean E. Jackson, Byron Good, and Veena Das.  In an exceptionally comprehensive and nuanced reading of Susan Sontag's theoretical, fictional, and journal writing about suffering, Jurecic uncovers Sontag's inconsistent, yet revelatory positions on the human capacity for responding to representations of pain.  The chapter on Sontag is enriched by Jurecic's reading of Annie Lebovitz's and David Reiff's responses to Sontag's suffering: in Lebovitz's controversial photographs of Sontag's final days (included in A Photographer's Life: 1990-2005) and Reiff's memoir about his mother's illnesses (Swimming in a Sea of Death). 

Illness as Narrative closes with examples of what Jurecic calls reparative writing and reading practices.  In the first instance, ill writers such as Jean-Dominique Bauby (The Diving Bell and the Butterfly) both recreate "a more coherent sense of themselves" and dislodge "fixed ideas and narratives" about illness (109).  In the second instance, Jurecic outlines the limits of two competing readings of Anne Fadiman's The Spirit Catches You and You Fall Down.  One assumes that readers will by nature empathically imagine those who are culturally different from themselves.  The other looks skeptically at the assumption that what medical educators call cultural competence can be acquired by reading a book.  Jurecic suggests that strategies for reading and teaching informed by Janelle S. Taylor, Eve Kosofsky Sedgwick, and Rita Felski can encourage more complex habits of response, such as Taylor's "'empathic curiosity'" (quoted 122).

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