Showing 11 - 20 of 623 annotations tagged with the keyword "Body Self-Image"

Patiently Waiting For…

Nisker, Jeffrey

Last Updated: Jan-17-2018
Annotated by:
Duffin, Jacalyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

An artist, Ruth, lives with quadriplegia and manages to drive (and dance) with a special wheelchair that she controls with her chin. She also enjoys terrorizing doctors in the hospital corridors, where she is seen on a regular basis because of frequent bouts of infected bedsores. She has a new computer and is “patiently waiting for” a biomedical engineer to set it up to manage, like her chair, with her chin. She wants to write, to draw, to create. But the wait list is long, technicians scarce, and every candidate deserving.

On one of her admissions, Ruth meets the physician-narrator who is appalled by a medical resident’s lack of empathy in relating her case as if she were not present. Distressed by the encounter, the doctor is all the more disturbed when he notices that Ruth’s birth date is the same as his own.

He tries to make it up to her by withdrawing from her care in order to be her “friend,” one who tries to understand and will defend her strong desire to live despite her disability. Driven by curiosity about her past, her sharp wit, and how she faces each day, the doctor never quite achieves his goal and constantly feels guilty for letting her down as an advocate and a friend, and possibly also for being able-bodied himself.  He never visited her in her group home, and when she comes to hospital in florid sepsis, he is unable to prevent his colleagues from letting nature take its course. His own bout with severe illness, possibly MS—more likely a stroke--resonates with Ruth’s plight. Long after her death, he can imagine the acid remarks that she would make about his foibles.

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Stitches

Small, David

Last Updated: Dec-28-2017
Annotated by:
Natter, Michael

Primary Category: Literature / Nonfiction

Genre: Graphic Memoir

Summary:

Stitches is a beautifully crafted graphic novel by award winning writer and illustrator David Small. The memoir chronicles Smalls’ life with chronic illness, focusing on his experience as a child and adolescent with cancer in the setting of an abusive upbringing. We learn through the eyes of a child what being a patient is like, and how, despite all odds Small was able to use art as a way to make a normal life for himself. 

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Second Bloom

Krugovoy Silver, Anya

Last Updated: Dec-05-2017
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

These poems are not a cancer chronicle, but the experience of living with cancer is threaded through them in a way that illustrates beautifully how awareness of illness may permeate daily life, but is foregrounded and backgrounded, reshaped and revisited in shifting ways as it takes its course.  They encompass moments in family life, moments in the hospital, moments of spiritual longing and awareness of loss.  Together they offer a record of accommodation, acclimation, and complex acceptance.

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Annotated by:
Miksanek, Tony

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

In this follow-up to his masterful memoir Do No Harm, British neurosurgeon Henry Marsh must deal with old age and retirement after nearly four decades as a doctor. Stepping down engenders mixed feelings, and he confesses to "longing to retire, to escape all the human misery that I have had to witness for so many years, and yet dreading my departure as well" (p17).

Marsh keeps busy by spending time in Nepal training young doctors and operating. He also makes visits to the Ukraine to perform surgery and teach. He has a fondness for creating things and purchases a fixer upper cottage that he struggles to repair. Marsh recounts previous neurosurgical cases, mostly patients with brain tumors. He remembers the distress at being sued by patients. He reveals his own admission to a psychiatric hospital as a young man. Regrets, both personal and professional, are confessed.

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The Beautician

Gunn, Thom

Last Updated: Nov-06-2017
Annotated by:
Ratzan, Richard M.

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

"Beautician" is a short poem about a beautician visiting a dead friend in the morgue, her sorrow at seeing her friend dead and not looking her best, even dead, and the beautician's attempts to rectify the situation. It is fifteen lines long, in three stanzas of five lines each, in iambic pentameter with a rhyming pattern of abbab. The rhyming is best described as approximate, e.g., "skill" with "beautiful" with "all".

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Annotated by:
Schilling, Carol

Primary Category: Performing Arts / Film, TV, Video — Secondary Category: Performing Arts / Film, TV, Video

Genre: Film

Summary:

The opening of the documentary Fixed: The Science/Fiction of Human Enhancement is meant to startle. A young woman (disabled performance artist Sue Austin) in a motorized wheelchair fitted with transparent plastic fins gracefully glides underwater around seascapes of coral and populations of tropical fish. The scene dislodges expectations about what wheelchairs can do and where they belong. It creates what for many are unlikely associations among disability, wonder, joy, freedom, and beauty. Watching Austin incites questions about what this languid and dreamy scene might have to do with human enhancement, which more predictably brings to mind dazzling mechanical, chemical, or genetic interventions that surpass the ordinariness of a wheelchair and extend human capacities. But this gentle scene opens the way for the film’s conversations about the ethics and meanings of human enhancement that emphasize perspectives by people with disabilities.  

Regan Brashear’s film features interviews with and footage of people living with disabilities as they move in varied ways through their environments—home, workplace, airport, therapy lab, city street. Photographs, news footage, and performances by mixed-ability dance companies complement their stories. We also hear from a transhumanist, academicians, and activists. Together they express a wider range of views about human enhancement than seems possible in an hour-long film.  

Often contrastive views are paired or clustered. For instance, double amputee Hugh Herr, Director of MIT’s Biomechtronics Group, brags that his carbon-fiber and other prosthetic legs will outperform the biological legs of aging peers. His lab develops robotic limbs controlled by biofeedback, and he intends to end disability through mechanical technologies. Gregor Wolbring, a biochemist and bioethics scholar who was born without legs, regards himself as a version of normal and rejects being fixed. “I’m happy the way I am!” he exuberantly proclaims. Rather than strive for normalcy through restorative technology, Wolbring urges acceptance of imperfection.  

Altogether, the interviewees raise questions about how to respond to differences among human bodies: focus on corrections toward achieving a concept of “normal”? accept diversity? extend human potential? The interviews call out underlying assumptions about disability that influence our answers. Do we assume that disability is an aberration that should be erased? A condition located in individual bodies? A condition brought about by unaccommodating social and built environments? Or, as disabled journalist John Hockenberry proposes, “a part of the human story”?

Fixed
also asks what the social and ethical consequences of pursuing enhancements might be. Do they equalize opportunity? Do they misplace priorities by channeling attention and resources away from basic health care and ordinary, essential technologies, such as reliable, affordable wheelchairs? Are biological, chemical, and mechanical enhancements indispensible opportunities to extend human experience, as transhumanist James Hughes claims? Do we have an ethical responsibility to enhance, whether to correct or extend?
                                                                                              
Hockenberry mentions that we already enhance. Think of eyeglasses, telescopes, hearing aids. People with disabilities, he points out, are typically the first adopters of technologies, such as computer-brain interfaces, that are destined for wider use. Archival film footage of warfare during this discussion reminds us what many of those uses have been. Should we worry, he asks, about using people with disabilities as research subjects? Or should we say with recently paralyzed Fernanda Castelo, who tests an exoskeleton that braces her body as it moves her forward: “Why not”?  

Considering whether we should trust technology to create equality or treat each other equally in the presence of our differences, disability rights attorney Silvia Yee poses the film’s most vital question: “Which is the world you want to live in?” While Fixed gives a fair hearing to disparate answers, the closing image is suggestive. A woman in a motorized wheelchair offers a lift to someone struggling to push a manual chair uphill. She invites him to grasp the back of hers and they roll forward together.

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The Story of Beautiful Girl

Simon, Rachel

Last Updated: Aug-07-2017
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Fiction

Genre: Novel

Summary:

On a stormy night in 1968 a retired, widowed schoolteacher in rural Pennsylvania opens her door to find a young couple, she white, he African American, wrapped in blankets, drenched, and silent.  Letting them in changes her life.  They have escaped together from a nearby mental institution most locals simply call "The School."  The young woman has recently given birth.  When Martha lets them in, her life changes forever.   Supervisors from "the School" show up at the door, the young man escapes, and the young woman, memorably beautiful, is taken back into custody.  The only words she is able to speak out of what we learn has been a years-long silence are "Hide her."  Thus she leaves her newborn baby to be raised by a stranger.  The remaining chapters span more than forty years in the stories of these people, linked by fate and love and the brutalities of an unreformed system that incarcerated, neglected, and not infrequently abused people who were often misdiagnosed.  Homan, the young man who loved Lynnie, the beautiful girl from the institution, was deaf, not retarded.  Lynnie was simply "slow," but a gifted artist who recorded many of the events of her life in drawings she shared only with the one attendant who valued and loved her.  Though her pregnancy resulted from being raped by a staff member, the deaf man longs to protect her and care for the baby.  Years separate them; Homan eventually learns signing; Lynnie's sister befriends her and an exposé results in the closure of the institution.  Over those years Lynnie and Homan witness much cultural change in treatment of people like them who were once systematically excluded.  They find social identities that once would have been entirely unavailable to them.  And eventually, after literal and figurative journeys of discovery, they rediscover each other.   

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Primary Category: Literature / Nonfiction

Genre: Graphic Memoir

Summary:

In-Between Days: A Memoir about Living with Cancer is an accurate and suggestive title. At 37, Teva Harrison was diagnosed with Stage IV breast cancer with metastases to her bones. She lives between hopes for new treatments allowing a useful life but also fears about debility—some already caused by her treatments—and death. An artist, she has created a hybrid of a graphic novel with comic-book style drawing on the left page and traditional prose facing on the right, with variations of this format now and then.     
       
The imaginative world of the book ranges widely in mood, topic, and subject matter, and there is a helpful organization to group the material.
Her Preface tells us how drawing helped her gain some power over “the bogeyman that is my cancer” (p. 1). In her Prologue, she tells of “living in the shadows,” or “liminal spaces,” but choosing to occupy these as best she can (p. 3).            

Part One lays out the medical facts and dilemmas. The sections are Diagnosis, Treatment, and Side Effects. The author describes the turmoil of being sick with no clear cause, the emotional impact of the serious diagnosis on her and her family, also nausea, loss of fertility, dilemmas of pain management, and many side effects of treatment, including weight loss as well as sudden and torturous menopause.
  
Part Two explains her social status, her marriage, her “mixed-bag inheritance” (including high-risk Ashkenazi genes), and social aspects, including feeling invisible as a patient, accepting help from friends, being in a support group, and what does a likely “early demise” mean for her, an atheist?
         

Part Three explores the many emotions in sections for hope (using clinical trials, for example), gratitudes (“At least I’m wasting, not bloating”), wishes, fears, and “Managing Anxiety at Home” (pictures of yoga, gardening, long walks, house cleaning), self-blame, and—nonetheless—dreams. The final section “Incurable” names her current status: “In treatment for the rest of my life,” but the facing picture shows her as a large powerful bird flying among dramatic clouds with the words “I mean what do I have to lose?” Her prose affirms: “Live like a tornado, when I can.” 

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Annotated by:
Glass, Guy

Primary Category: Literature / Literature

Genre: Memoir

Summary:

James Rhodes is a British classical concert pianist who is known for his iconoclastic, pop-inspired performing style.  He is also an outspoken survivor of childhood sexual abuse who is equally frank about his struggles with severe mental illness. Rhodes’s memoir Instrumental is a tribute to the healing power of music.  Indeed, music quite literally saves the author’s life; it is only when a friend smuggles an iPod loaded with Bach into his psych ward that Rhodes regains the will to live.   

Rhodes does not mince words.  We learn that he was violently raped by a gym teacher on a regular basis for five years from the age of five. Left with severe internal injuries that produce wracking pain, he requires multiple surgeries.  He soon also develops dissociative symptoms, drug and alcohol addiction, self-injurious behaviors, and chronic suicidal ideation. Barely able to function, he endures many tumultuous years during which he abandons the piano.  The author’s subsequent journey from physical and emotional fragmentation to wholeness through music provides the substance of his book.
 

The preface to Instrumental is designated “Prelude,” and the ensuing twenty chapters, labeled “tracks,” all correspond to musical works.  (All twenty tracks may be listened to, for free, on Spotify.) In addition, as if to assure the reader he is in good company, Rhodes offers psychological profiles of famous composers.  We learn, for example, that Bruckner suffered from a morbid obsession with numbers, and that Schumann, after throwing himself in the Rhine, died in an asylum.  

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Annotated by:
Mathiasen, Helle

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

A rare patient narrative from 1812 describes a mastectomy performed before the introduction of anesthesia. This letter from Frances d'Arblay (1752-1840) (née Frances [Fanny] Burney), addressed to her older sister, Esther, details her operation in Paris by one of Napoleon's surgeons.In her childhood and youth, Fanny Burney moved in the best London society; she was a friend of Dr. Johnson who admired her. She served five years at the court of George III and Queen Charlotte as Second Keeper of the Royal Robes (1786-1791). Fanny Burney married Adjutant-General in the army of Louis XVI Alexandre-Jean-Baptiste Piochard d'Arblay in 1793. He had fled to England after the Revolution. They lived in England and spent ten years in France (1802-1812).Burney's mastectomy took place 30 September 1811. The patient wrote about her experience nine months later. She chronicles the origin of her tumor and her pain. She is constantly watched by "The most sympathising of Partners" (128), her husband, who arranges for her to see a doctor. She warns her sister and nieces not to wait as long as she did. At first resisting out of fear, the patient agrees to see Baron Dominique-Jean Larrey (1766-1842), First Surgeon to the Imperial Guard.He asks for her written consent to guide her treatment; her four doctors request her formal consent to the operation, and she makes arrangements to keep her son, Alex, and her husband, M. d'Arblay, away. Her husband arranges for linen and bandages, she makes her will, and writes farewell letters to her son and spouse. A doctor gives her a wine cordial, the only anesthetic she receives. Waiting for all the doctors to arrive causes her agony, but at three o'clock, "my room, without previous message, was entered by 7 Men in black" (136).She sees "the glitter of polished Steel" (138). The extreme pain of the surgery makes her scream; she feels the knife scraping her breastbone. The doctors lift her up to put her to bed "& I then saw my good Dr. Larry, pale nearly as myself, his face streaked with blood, & its expression depicting grief, apprehension, & almost horrour" (140).Her husband adds a few lines. These are followed by a medical report in French by Baron Larrey's 'Chief Pupil'. He states that the operation to remove the right breast at 3:45pm and that the patient showed "un Grand courage" (141). She lives another twenty-nine years. It is impossible to determine whether her tumor was malignant.

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