Showing 1 - 10 of 866 annotations tagged with the keyword "Patient Experience"

Summary:

A psychiatrist and PTSD (post-traumatic stress disorder) specialist, Dr. Shaili Jain has written a book on PTSD and its many angles, from diagnosis to treatment to a larger perspective on cultural and historic influences on the development of traumatic stress. She weaves the story of her own family’s experience with the Partition of India and Pakistan in 1947, particularly its effect on her father and grandparents, as a way to consider the effect of trauma on family, but also how those traumas become ‘unspeakable.’  

A brief but effective introduction outlines the seven parts of the book:
1. Discovering Traumatic Stress: historical perspective and the changing language to describe the effects of trauma.
2. The Brain: the physiologic and psychological underpinnings of PTSD, including effects on memory formation and retrieval.
3. The Body:  such as addiction, cardiac effects and concerns at different stages of life.
4. Quality of Life: domestic and sexual violence, socioeconomic factors.
5. Treating Traumatic Stress: programs, treatment strategies and psychopharmacology.
6. Our World on Trauma: global health, large scale tragedy, terror and war.
7. A New Era: An Ounce of Prevention: resilience, accessibility of care including early and preventative care. 

Additionally, almost 100 pages of notes, glossary, resources and an index provide an easy way to further explore, to use the book to look up specific topics, and underscore the heavily researched nature of the text.   The book is eminently readable, with numerous, well-placed stories of patient encounters and particular experiences and manifestations of PTSD.  These stories are illustrative of the concepts Jain ably explains. However, they also provide an insider’s view of what happens in the consulting room.  In the prologue, Jain describes a young Afghanistan War veteran, who has been hospitalized after a violent outbreak at a birthday party: “Josh’s PTSD was fresh, florid, and untreated…. His earlier poise caves in to reality, and his face falls to anguish.” (p. xvi) We are in the room, listening to the patient, witnessing the tears of the medical student, glimpsing the attending psychiatrist’s response, and relating to Jain, as a psychiatry chief resident, as she understands that the individual before her, even as he shows classic signs of traumatic stress, remains an individual, a person in need of care.   

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Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The Scar is a powerful, thoughtful, and moving book, part memoir about the author’s illness across some 30 years, part history of depression and its treatment and part essay to evoke cultural and personal values about sickness, suffering, health, and death. Cregan, a gifted stylist herself, draws on literature that deals with human suffering, mortality, and wisdom.  She frankly describes her sorrows and hopes, the death of her baby, her attempts to kill herself, and her survival today with many blessings.   
           
The title refers to a scar on her neck, a result of her effort to cut her throat with a piece of glass so that she would die. This attempt, in a hospital, reflects the depth of her illness and the failure of her caregivers to prevent it. Her book explores the complexity and variety of mental patients and the range of medical responses—some useful, some not—to  treat them. Writing as a survivor, she draws on her journal, hospital records, emails, interviews, and more; she is part journalist, detective, archivist, and forensic pathologist—as if doing an autopsy on the suicide she attempted.
 
Ch. 1
What Happened describes the birth and immediate death of her daughter Anna and her descent into depression and initial hospitalization.

Ch. 2
What Happened Next discusses mental hospitals and her perceptions of being a patient in one. A dramatic paragraph describes her cutting her throat (p. 51).

Ch. 3
How to Save a Life presents electroconvulsive therapy (ECT), from the jarring images of “One Flew Over the Cuckoo’s Nest” to her own experience of some 17 treatments; she reports that these helped in recovery.

Ch. 4
The Paradise of Bedlams gives a history of mental hospitals. She is hospitalized three months, “a prisoner,” in her term.

Ch. 5
Where Do the Dead Go? explores the dilemmas of the living as they mourn the deaths of people they love, including approaches from Judaism and Christianity. Mary has nightmares about her lost baby. She discusses Freud, Rilke, T. S. Eliot and others. She buries Anna’s ashes.

Ch. 6
Early Blues discusses modern attempts of science and the pharmaceutical industry to create drugs for mental illnesses, with influences from psychodynamic and biological concepts.

Ch. 7
The Promise of Prozac discusses that famous (notorious?) drug; she takes it on and off while working on her PhD, then other drugs as they became available.

Ch. 8
No Feeling Is Final sums up many themes.  She’s in her late 30s, remarried, and trying to conceive. After IVF, she’s pregnant. Baby Luke is born. She understands that the scar on her neck has an analogue with Odysseus’ scar on his leg: a symbol of survival through hard, even desperate times, for her a “double trauma: the loss of my child, the loss of myself”  (p. 243).  

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Summary:

Thomas De Quincey was a British writer—essayist, mostly—during the first half of the nineteenth century. He is best known for writing about his personal experiences with opium, which appeared in two sequential issues of London Magazine in 1921, and then published as this book in 1822. He would later write a sequel, and later still a more elaborated version of the original.  

De Quincey’s first encounter with opium was in 1804 when he was eighteen years old. Opium was freely available then and was often consumed for recreational purposes. De Quincey was not seeking it for pleasure, at first. Based on a friend’s recommendation, after suffering excruciating facial and head pain for twenty days, he tried opium to relieve the pain. De Quincey acquired opium in the form of an elixir (laudanum) from a local druggist (“unconscious minister of celestial pleasures!”) (p. 43). The book covers the subsequent eighteen years of his opium use, though he would use it until the end of his life at age seventy-four. 

De Quincey refers to opium as the “dread agent of unimaginable pleasure and pain” (p. 42). The book is organized accordingly. After describing his early years of straitened circumstances including near starvation, he divides the book into sections on “the pleasures of opium,” and “the pains of opium.” 
 

De Quincey found the pleasures of opium with his first dose in 1804, pleasures that extended past the pain relief it provided.

But I took it: – and in an hour, oh! Heavens! what a revulsion! what an upheaving, from its lowest depths, of the inner spirit! what an apocalypse of the world within me! That my pains had vanished, was now a trifle in my eyes: – this negative effect was swallowed up in the immensity of those positive effects which had opened before me – in the abyss of divine enjoyment thus suddenly revealed. (p. 44)

For more of these pleasures, De Quincey drank laudanum over the next ten years at a frequency he describes variously as “occasionally,” “at intervals,” and “seldom…more than once in three weeks: this was usually on a Tuesday or a Saturday night.” He learned that some time was needed between “several acts of indulgence in order to renew the pleasurable sensations,” a property of opioids pharmacologists would later call tolerance (pp. 8-9).

De Quincey eventually became familiar with the pains of opium when the return of severe intestinal pains he suffered in his “boyish days” made it necessary that his laudanum use become “an article of daily diet,” (p. 9) because he “could no longer resist,” and “could not have done otherwise” (p. 59). The amount of opium De Quincey consumed as a result was enough to cause severe reactions when he tried to reduce his dose: “It is a state of unutterable irritation of the stomach… accompanied by intense perspirations, and feeling such as I shall not attempt to describe without more space at my command” (p. 71).

Though relieving pain was the initial reason for his daily diet of laudanum, for most of the next eight years, avoiding withdrawal reactions became the more important motivation for De Quincey’s laudanum intake: “it was solely by the tortures connected with the attempt to abjure it, that it kept its hold” (p. 86). He eventually knew he had to quit when he realized:  “I must die if I continued the opium: I determined, therefore, if that should be required, to die in throwing if off” (p. 87). Throwing off opium was not easy for De Quincey as he experienced “torments of a man passing out of one mode of existence into another,” (p. 88) but he claims he was ultimately successful.

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Summary:

Headcase explores themes of mental health, mental illness, and the experience of mental health care services by members of the LGBTQ community. The editors state, “We initially conceptualized Headcase in 2014 as a curated collection of personal pieces including essays, poems, illustrations, and photographs by writers and artists both established and new.” (p. xxviii) They further decided to include a broad array of patient, provider, social, racial, and ethnic perspectives to “present a broader, more in depth, and balanced conversation.” (p. xxviii)  
 
Schroeder and Theophano divide their anthology into five topical sections: (1) conversations about health and illness, (2) stories of survival, (3) encounters of a mad kind, (4) pushing boundaries, and (5) the poetics of mental health and wellness. Among pieces in the first section, Arlene Istar Lev’s “Queer Affirmative Therapy” (p. 12) introduces a concept that appears repeatedly throughout the book. Unlike traditional conversion therapy, which tries to “cure” gay persons, or even the more neutral DSM V approaches, queer affirmative therapy not only accepts LGBTQ identities, but considers them normal healthy variants. Fidelindo Lim’s and Donald Brown’s more personal essay, “Sa Kanyan Saring Mga Salita” (p. 38), explores the gay experience in Filipino culture. Among the sad stories in section two, Chana Williams tells the tale of her mother’s lobotomy as a treatment for depression and lesbian relationships. Lobotomy also appears in “Fix Me Please, I’m Gay” (section three, p. 169), where psychologist Guy Albert discusses the era of conversion therapy.  

In addition to essays, the conversation in Headcase includes poems, artwork (see, for example, Gabrielle Jordan Stein’s “This Work Is About Digested Socks,” p. 156), a suite of black-and-white images), a series of glyphs, and even a graphic story about J.R. Sullivan Voss’ attempts to fit into society as a trans-man, “Sisyphus (Or: Rocks Fall and Everyone Dies.” (p. 88) In the final section, Guy Glass presents an excerpt of his play, “Doctor Anonymous,” about the 1972 American Psychiatric Association meeting in which a closeted gay psychiatrist wearing a mask  asserted the normality of gay identity. (p. 260) To contemporary viewers, the most shocking revelation in the play is the fact that at that time homosexuality was considered a mental disorder and conversion therapy was a standard practice.
 




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Waverly Gallery

Lonergan, Kenneth

Last Updated: May-02-2019
Annotated by:
Teagarden, J. Russell

Primary Category: Performing Arts / Theater — Secondary Category: Literature / Plays

Genre: Theater

Summary:

The play is set between 1989 and 1991, the last two years of the life of Gladys Green, an 85 year old woman who runs a small art gallery in New York's Greenwich Village. She lives on her own near the gallery, but she is watched over by an adoring grandson (Daniel) who lives in the same building, and by a doting daughter (Ellen) and son-in-law (Howard), who live uptown from her. Gladys can’t hear very well and she has diabetes, but otherwise she is doing well enough. 

From this point we watch Gladys gradually lose some of her mental capabilities, mostly memory. Our attention is directed to how the family responds and comes to grips with her deterioration. Aware of Gladys’ past before she opened her gallery as an activist lawyer with a frenetic lifestyle, Daniel lays out a strategy the family adopts: “she’s got to have something to do.” Their chief tactic is to keep Gladys in the gallery where she could mix with people, keying off what she said keeps her sane: “Everyone needs someone to talk to, otherwise you’d just go nutty. I love to talk to people.” 
 

This approach works for a while, and mainly through permitting a young artist (Don), who has never before sold a painting, to exhibit his work in the gallery. Don keeps Gladys company and talks to her. He thinks he notices her hearing problem worsening, but Howard tells him, "I’m afraid that’s more her memory than her hearing aid.” What speeds up her deterioration, however, is the gallery losing its lease when the owner of the space decides to turn it into a cafe. 
 

A path ensues that is familiar to many people who have been close to a person losing memory and other mental functions with age. The family desperately wants to keep Gladys as independent as possible, but they need more help as time passes. She can stay in her own apartment for awhile with visiting nurses and aides, but eventually she needs to move in with Ellen and Howard; they never liked the idea of putting her in a nursing home, and they never did. In an aside directed at the audience, Daniel describes what his mother did for Gladys thereafter: she “took care of her, dressed her and cleaned her up and fed her and watched her fall apart, day in and day out with nothing to stop it and no relief in sight.” It did end, though, two months later when Gladys died in Ellen’s home.

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Annotated by:
Glass, Guy

Primary Category: Literature / Nonfiction

Genre: Essay

Summary:

Esmé Weijun Wang is a novelist who has been diagnosed with Schizoaffective Disorder.  The Collected Schizophrenias is a book of personal essays that was the 2016 winner of the Graywolf Press Nonfiction Prize. 

A precocious young person on a track to success, Wang experiences a manic episode at Yale that leads to her first hospitalization.  After a second hospitalization, her college washes its hands of her.  Hitting roadblocks time and time again requires her to rebuild her life over and over.  This is not a conventional chronological autobiography but rather essays that provide different approaches to the author’s experience of mental illness.  The plural “schizophrenias” of the title encompasses the whole schizophrenic spectrum of disorders.  As Wang explains, her own diagnosis is “the fucked-up offspring of manic depression and schizophrenia” (p. 10).  

In an essay entitled “High-Functioning” we learn how the author, having been a fashion editor, knows how to pass for normal: “My makeup routine is minimal and consistent.  I can dress and daub when psychotic and when not psychotic.  I do it with zeal when manic.  If I’m depressed, I skip everything but the lipstick.  If I skip the lipstick, that means I haven’t even made it to the bathroom mirror” (p.44).  

Later, in “The Choice of Children,” volunteering at a camp for bipolar children makes Wang think about what it would be like to inflict her diagnosis on her own offspring.  In “Reality, On-Screen” she attempts to convey the sensation of decompensating to psychosis.  And in “Yale Will Not Save You” she considers the failure of universities to accommodate mentally ill students. 

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Summary:

This is a gripping, informative, and well-researched book about human blood. An accomplished journalist, Rose George, covers a variety of topics, largely in the U.S., Britain, and Canada but also in Nepal, India, and South Africa. She describes many current issues, provides historical background, and speculates on future technologies, such as replacement of blood by other fluids. There are nine sections:

 “My Pint”  While the book’s title refers to the author's volume of blood, this chapter’s title refers to a single pint she is donating. We read about blood supply (donated and stored blood) in the U.S. and—by contrast—in India.

“The Most Singular and Valuable Reptile” refers to the leech. This arresting chapter describes both historical and  modern uses of leeches to gather blood from humans. She visits a company called Biopharm in Wales where leeches are raised and prepared for shipment to medical clinics and hospitals.  

 “Janet and Percy” is a historical chapter focusing on Dame Janet Maria Vaughan, a central figure in creating the Blood Transfusion Service in England during WWII and Percy Oliver, who guided its predecessor, the London Blood Transfusion Service.  

“Blood Borne.”  This chapter describes Khayelitsha, South Africa, “the ugly backside of Cape Town” (p. 100): a place of poverty, crime, rape, sexual predation, and HIV. While rich nations provide assessment and treatment for people with HIV, poor nations have many citizens infected with the virus and, over time, rising rates of infection. 

 “The Yellow Stuff” describes the plasma portion of blood; it can be frozen (as FFP) and used as a filler for bleeding or trauma patients. Unlike blood—which can only be given without payment—plasma can be collected from paid donors. It is a largely traded commodity, part of a multi-billion dollar industry worldwide. Plasma carries Factor VIII, a crucial protein for clotting blood; hemophiliacs lack this and are at risk for death by bleeding externally or internally. Some plasma has been tainted, for example by HIV.

“Rotting Pickles.”  In Western Nepal (and other places), menstruation is taboo. George writes, “We are in a minority among species, and among mammals, to bleed every month.” She reviews historical views of women’s periods, mostly negative. Worldwide, there are many taboos, but also some educational efforts for public health that are helpful in impoverished areas.  

 “Nasty Cloths.” This tells the unusual story of an Indian man named Muruga, “a poorly educated workshop helper” who became a leader in creating sanitary protection for menstruating women. Worldwide, the feminine hygiene industry is some $23 billion. George also reviews related history, including Toxic Shock Syndrome from tampons.  

 “Code Red.” Bleeding is often a fatal factor in trauma, even with the best efforts to transfuse blood into the patient, unit after unit. George observes open chest techniques at a resuscitation. She reviews breakthroughs in blood typing, component therapy, and “buddy transfusions.”  

“Blood like Guinness: The Future.” George starts with images from the past: vampires, human drinkers of blood, past and, even, present. She interviews a purveyor of the concept that “young blood” is healthier than older blood. Can there be, discovered or created, blood substitutes that also save lives? 

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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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Summary:

In 2006, Emergency medicine trainee, Damon, and his wife, Trisha, have two boys, Thai (age 4) and Callum (age 2.5).  All is well in their lives until Callum begins vomiting for no apparent reason.  He is found to have medulloblastoma, an aggressive brain tumour, for which the only possible hope for a cure comes from surgery and six cycles of ever more arduous chemotherapy with stem cell recovery at Toronto’s Hospital for Sick Children. The little family moves to Toronto and commits to supporting Callum as best they can, ensuring that he is never alone even during his long weeks of reverse isolation. They also try to keep Thai nearby, involved and aware, with the help of a local school and grandparents. But Callum dies during the last cycle of treatment.  

Saddened, exhausted, and bereaved, Damon and Trisha go back to their home town and try to (re)construct their lives, slowly returning to studies and work. They find meaning in creating tangible and intangible memorials to their lost son, and they find purpose in the more difficult task of moving forward, never losing the pain of grief. They adopt a little girl. Damon knows that Callum is always with him and the experience of his illness and death has dramatically infused his work as a physician.

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Taking Care of Time

Davis, Cortney

Last Updated: Jan-02-2019
Annotated by:
Kohn, Martin

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

In this volume by the esteemed nurse-poet/writer, Cortney Davis, are 43 previously published poems (some revised for this collection), assembled in 3 sections-- the middle section featuring her long poem, "Becoming the Patient," that recounts through 10 shorter poems her time "in the hospital."

The poems in the surrounding sections describe in beautiful and intimate detail her patients' lives and the call to and practice of nursing. Featured throughout are battles won and lost-- with disease, with the medical staff, and as the title-- taking care of time-- suggests, the finitude we all face. No matter the difficulties of hospital life-- whether as practitioner or patient-- its familiarity  provides grounding and comfort in these poems as, for example, heard through the speaker of "First Night at the Cheap Hotel" who tells us:

"Being here is like being sick in a hospital ward
without the lovely, muffling glove of illness.
In hospital, I would be drowsy, drugged into a calm
that accepts the metal door's clang,
the heavy footfall right outside my door.
All these, proof of life,
and there would be a nurse too, holding my wrist,
counting and nodding, only a silhouette in the dark" (p.67)

And if sometimes the experiences and images become too hard to bear, the skillful nurse-poet can, as Cortney Davis does in "On-Call: Splenectomy," "tame them on page” (p.52).

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