Showing 1 - 10 of 266 annotations tagged with the keyword "Illness Narrative/Pathography"

Annotated by:
Davis, Cortney

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

When poet and writer Amy Nawrocki was nineteen years old, a college student returning home after her freshmen year, she suffered a sudden and mysterious illness.  She was transformed, in an eye-blink, from an active young woman to a bed bound and comatose patient.  "There is nothing to embellish--I got sick, I fell into a deep sleep, I woke up.  No fairy tale" (page 3).  Months of her life went missing: this brief and lovely memoir is her attempt to reconstruct those hours and those experiences.  She begins with reflections on journal entries written before her illness began, giving the reader (and herself) a persona, a personality, a living breathing young woman who already writes, who lives in her head, and who always felt "totally comfortable" in her body (page 3). Then we lose her, as she lost herself.  She re-visions the story of her months of suffering and recovering from encephalitic coma through the various medical records and family memories she gathers in order to reconstruct the missing pieces of her life. "The coma girl has detached herself from me. I have to dream her up or rely on what others saw, eye witnesses who had to detach themselves in a different way" (page 21). Coming back into life after a serious illness is a strange and often prolonged journey.  Nawrocki writes, "Waking up took as long as sleeping" (page 33).  And in this waking up time, she begins to see who she was (or how she looked to others) during those blank months. "The images still frighten me. My face was a mess; hair cropped short, puffed up without styling, ragged, like I just woke up. My eyes seemed empty but weirdly wild" (page 35). During her recovery, the author begins journaling again. "In my college notes, I focused on the art of reflection; after the illness, I wanted mainly to observe" (page 42).  And in recovery, she begins to build memories once again. She lists her recollections during weeks in rehab, and she remembers "the final trip home, a cake decorated with blue and yellow icing waiting for me" (page 45).

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The Center Cannot Hold

Wells, Kenneth

Last Updated: Jul-31-2018
Annotated by:
Glass, Guy

Primary Category: Performing Arts / Theater

Genre: Theater

Summary:

This is an opera based on Elyn R. Saks’s best-selling book The Center Cannot Hold.  Subtitled “My Journey Through Madness,” the memoir recounts the author’s struggle with schizophrenia.  Here, Saks has collaborated with composer/psychiatrist Kenneth B. Wells on the opera’s libretto.  

The librettists utilize the device of having three different singers portray Elyn.  One manifestation, the “Lady of the Charts,” represents her when psychotic.  The others are Elyn as a law student and the present day Professor Saks as a law professor.  Another dramatic device involves the use of a chorus to embody the protagonist’s schizophrenic delusions.  At the height of her paranoia, as Elyn sings Beethoven’s 5th Symphony in an effort to keep herself together, the chorus recalls the Symphony’s opening notes by singing “Elyn must die.”  

The opera opens with Elyn as Professor Saks reflecting on her childhood. Even then there were signs of the illness that, to quote a famous poem by William Butler Yeats, ensures “the center cannot hold” in Elyn’s life. During the first act, Elyn, a Yale law student, becomes psychotic in front of her friends and is hospitalized. In a Connecticut hospital she is put in restraints and treated by various mental health professionals. She imagines she hears demons threatening to kill her.  Elyn’s diagnosis and condition overwhelm her parents, who have been called by the hospital.  

In the second act, Elyn works to reintegrate her fragmented mind.  She is determined to get back to law school.  She is released from the hospital. She finds an antipsychotic medication, with fewer side effects, that she can live with. She resolves to devote her career to mental health law.  At the conclusion of the opera, Elyn anticipates graduation.  She has been instrumental in winning a class action suit against the use of restraints in psychiatric patients.  Her parents, friends and doctors proclaim their pride in her accomplishments.

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Annotated by:
Glass, Guy

Primary Category: Literature / Nonfiction

Genre: History

Summary:

Victorians Undone is no ordinary history book.  If you have ever felt dissatisfied by a sterile biography, wondering if its subject actually possessed bodily functions, look no further.  Here, British historian Kathryn Hughes undoes centuries of sheltering the reader from the unseemly by putting it on full display.  While the very term “Victorian” evokes an image of propriety, it was also a time of population displacement from the country to cities where “other people’s sneezes, bums, elbows, smells, snores, farts and breathy whistles were, quite literally, in your face”  (p. xi). The author seeks to rectify the imbalance by creating a history that puts “mouths, bellies and beards back into the nineteenth century“ (p. xiv), which she hopes will “add something to our understanding of what it meant to be a human animal“ (p. xv) during the Victorian Era.  

The book consists of five essays, each following a part of the body of an historical figure. In the first, entitled “Lady Flora’s Belly,” we learn about the tragic saga of Queen Victoria’s lady-in-waiting.  Did Flora’s protuberant abdomen conceal a tumor or a baby?  It was harder to find out than one might think.  Most women went through their lives without ever exposing their private parts to anyone but their husband.   Medical consultation when unavoidable might be conducted discretely, by post. 
 

Other essays focus on George Eliot’s hands, Fanny Cornforth’s (the lover of Dante Gabriel Rossetti, the Pre-Raphaelite painter) sensual mouth, and the beard that Charles Darwin’s grew to hide his eczema.  The book concludes with the gruesome tale of the dismemberment of Fanny Adams, an early case study in forensic pathology. The term "Fanny Adams" soon came, in navy slang, to mean unpleasant meat rations.

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Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Weeks after the birth of her child, the writer receives a phone call informing her that her mother, who has gone missing, has hanged herself.  This memoir, like others written in the aftermath of similar trauma, is an effort to make some sense of the mother’s mental illness and horrifying death. Unlike many others, though, it is the story of a family system—and to some extent a medical system—bewildered by an illness that, even if it carried known diagnostic labels, was hard to treat effectively and meaningfully.  The short chapters alternate three kinds of narrative:  in some the writer addresses her mother; in some she recalls scenes from her own childhood, plagued by a range of symptoms and illness, and her gradual awareness of her gifted mother’s pathological imagination; in some she reproduces the transcript of a video production her mother narrated entitled “The Art of Misdiagnosis” about her own and her daughters’ medical histories. Threaded among memories of her early life are those of her very present life with a husband, older children, a new baby, a beloved sister and a father who has also suffered the effects of the mother’s psychosis at close range.  

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Every Note Played

Genova, Lisa

Last Updated: Apr-10-2018

Primary Category: Literature / Fiction

Genre: Novel

Summary:

This is a dramatic and moving story about a concert pianist who, at 45 years of age, suddenly and inexplicably, has ALS, and also equally about his ex-wife Karina, who takes on his care throughout his slow, inevitable, and lethal decline. As many readers know, ALS (Amyotrophic Lateral Sclerosis). or “Lou Gherig’s disease,” hardens the motor nerves so that, progressively, there is no more control of muscles throughout the body. Not many readers know, however, the difficult path such patients and their families must pursue. This sensitive and detailed novel takes readers powerfully into the world of ALS, a disease for which there is today no cure.                                                                                      

Obsessed with his musical career and international travel, Richard has paid little attention to Karina and their daughter, Grace, and he has had affairs with other women. Karina has deceived him about her inability to bear more children. Because of their move from New York City to Boston, Karina, also a gifted pianist, has lost a possible career in jazz and now gives piano lessons to unpromising students. 

The first several chapters alternate between Richard and Karina. Although divorced from him, she brings him, now an ALS patient, back into the home they once shared. Various nurses, doctors, and other specialists try to explain the difficult future that includes certain loss of body functions, but Richard and Karina are slow to comprehend these. Despite their denial, they are forced to come to terms with Richard’s progressive decline and, finally, death.     
          
Richard loses the ability to use his hands, then his arms. He needs a special machine to breathe at night. Soon he has paid caregivers for parts of the day; these include a cheery and admirable man named Bill. No longer able to eat, Richard has a feeding tube. Later he needs a hospital bed. Also a Head Mouse to work his computer. Also an elaborate wheelchair. With unresolved issues in the past, Richard and Karina are emotionally apart—even with feelings of hate and rage—even while she cares for him.  

Karina’s walking partner Elise, a teacher, helps her stay sane. Karina travels to New Orleans with Elise and her class and finds her interest in jazz reawakened. No longer able to breathe even with assistance, should Richard go on to mechanical ventilation that will require 24-hour care at enormous expense? A choice is made. Richard dies, with various resolutions before and after his death.  

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Spy of the First Person

Shepard, Sam

Last Updated: Jan-30-2018
Annotated by:
Glass, Guy

Primary Category: Literature / Fiction

Genre: Memoir

Summary:

Spy of the First Person is a short semi-autobiographical narrative about a man with a debilitating condition.  He spends most of his time sitting in a wheelchair on his porch, goes for tests to the Arizona campus of the Mayo Clinic, and has a “handicapped sign hanging from the rearview mirror of his car” (p. 15). The man’s illness is unnamed, but we learn that his motor skills are grossly impaired: “His hands and arms don’t work much.  He uses his legs, his knees, his thighs, to bring his arms and hands to his face in order to be able to eat his cheese and crackers” (ibid).   

The story is told from various, shifting points of view.  At times we are in the head of the protagonist.  At other times, the perspective is that of a nosy neighbor who peers at the sick man through binoculars, hence the book’s title. There is a parallel narrative about an elderly couple and the wife’s gradual decline in health.  The Southwest plays such an important role here one might even say that it too is a character. 
 

There are also frequent shifts of tense.  It is not always clear whether we are in the past or present.  We alternate between the central character’s fantasies, memories, and observations. The effect of intertwining voices and tenses is reinforced by the brevity of the chapters, many no longer than a paragraph.  The overall impression is that while he may no longer have full control over his body, the man has retained an active (one might say overactive) mind.
 

Spy of the First Person
concludes as the man’s children take him to a Mexican restaurant.  The vivid description of a meal shared with his loved ones provides a sharp contrast to the inner thoughts that provide the bulk of this book.

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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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Annotated by:
Ratzan, Richard M.

Primary Category: Literature / Nonfiction

Genre: Biography

Summary:

This Side of Doctoring is an anthology published in 2002 about the experiences of women in medicine. While the essays span multiple centuries, most are from the past 50 years. They reflect on a multitude of stages in the authors’ personal and professional lives. In 344 pages divided into twelve sections, including "Early Pioneers," "Life in the Trenches," and "Mothering and Doctoring," the 146 authors recount - in excerpts from published memoirs, previously published and unpublished essays, poems and other writings, many of them composed solely for this collection - what it was then and what it was in 2002 to be a woman becoming a doctor in the U.S.. All but a handful of the authors are physicians or surgeons. There is a heavy representation from institutions on both coasts, especially the Northeast. Four men were invited to reflect on being married to physician wives. There is one anonymous essay concerning sexual harassment and a final essay from a mother and daughter, both physicians.   Beginning with the first American female physicians in the mid-19th century, like historic ground-breakers Elizabeth Blackwell and Mary Putnam Jacobi, the anthology proceeds through the phases of medical school, residency, early and mid-careers, up to reflections from older physicians on a life spent in medicine. Many of the authors have names well known in the medical humanities, including Marcia Angell, Leon Eisenberg, Perri Klass, Danielle Ofri, Audrey Shafer, and Marjorie Spurrier Sirridge, to mention a few. 

The essays and poems and letters have, as a partial listing, the following subjects: family influences in becoming a physician; professional friendships; marriage; children and their impact on a woman’s career in medicine; the decision not to have children; ill family members; illness as a physician; establishing one's sexuality as a physician; struggles with male physicians and their egos; mentors, both female and male; memorable patients (often terminal or dying); the life of a wife-physician, or mother-physician; the guilt and sacrifice that accompany such a dual life; the importance - and easy loss - of personal time or what internist Catherine Chang calls “self-care” (page 334).
  The anthology also touches on how women have changed the practice of medicine in various ways, prompted by the growing realization, as family practice physician Alison Moll puts it, "that I didn't have to practice in the traditional way" (page 185)  The authors write about the wisdom of setting limits; training or working part-time or sharing a position with another woman; and the constant face-off with decisions, especially those not normally confronting an American man becoming a doctor. 
One conclusion is evident before the reader is halfway through the book: there are many approaches to becoming a fulfilled female physician including finding one’s identity in the field.  Implicit in most of the essays and writings is the lament from obstetrician-gynecologist Gayle Shore Mayer: "Where is the self ? There are pieces of me everywhere", (page 275) recalling a similar cry from Virginia Woolf's Orlando, another essentially female soul trying to find what Richard Selzer has called "The Exact Location of the Soul".
 Several authors discover that female physicians have unique gifts to offer their patients. As internist Rebekah Wang-Cheng writes, “I am a better physician because I am a mother, and I know because of my experiences as a physician that I am a better mother.” (page 151) 

There are sections at the end devoted to a glossary for the lay reader, resources for women (as of 2002), and generous notes about the contributors (which section also serves as a useful index of each's contributions).

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Songs from the Black Chair

Barber, Charles

Last Updated: Sep-08-2017
Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Subtitled "A Memoir of Mental Interiors," this book is both an exploration of self and a search for reasons that led to the suicide of the author's friend, Henry, when both were of college age. But there is more. As the memoir unfolds, we learn that since childhood, the author experienced episodes of inexplicable, preoccupying, repetitive thoughts and behavior patterns--much later diagnosed as obsessive compulsive disorder (OCD). And finally, Barber discusses being drawn to work with mentally retarded people in a group home, and the mentally ill homeless at Bellevue Hospital in New York City.Growing up in an intellectual New England family with a tradition of sending its sons to Andover (a prestigious prep school) and Harvard, Barber was expected to continue the tradition, and so he did. At Harvard, however, Barber found himself disintegrating into obsessive thinking, unable to concentrate, near suicidal. He withdrew from Harvard, went back to his small town, hung out with his friends Henry and Nick, washed dishes in a local restaurant, took courses at the local college. Obsessive thinking continued to torment him.In desperation, he dropped out of college again, quickly finding a position as a "childcare worker" in a local group home. The author believes this step was the turning point that led eventually to effective treatment of his OCD (psychotherapy and Prozac), completion of his education, a fulfilling "career" in mental health recovery, and a happy family life. He is currently an associate of the Yale Program for Recovery and Community Health at Yale University School of Medicine.

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