Category Archives: Independent Study

These blog posts represents summaries of the readings and assignments that were completed for my independent study, American Culture 389: Illness Narratives: Literature and Medicine with Professor Alexandra M. Stern.

Finishing Cutting for Stone

I realized what it was about Cutting for Stone that resonated with me so much. In many ways, it is like two of my favorite books: East of Eden by John Steinbeck and The Kite Runner by Khaled Hosseini. This novel follows an Ethiopian family through the generations, and it also looks closely at the relationship between two brothers, Shiva and Marion. I am fascinated by these family dynamics and this sibling relationship, and part of why I enjoyed this novel was because it grounded these relationships in a rich culture within the world of medicine. Whenever I finish a novel, I always feel suspended- unable to move on to anything else, the story still sinking in. That was characteristic of the aftermath of this novel.

It’s hard to summarize this novel. So much happens, but there’s also so much more to the novel than what happens. Shiva and Marion grow up, still retreating to their united identity when necessary but developing their own sense of self. Marion is more outgoing, and in many ways he starts out as the voice of the twins. Shiva displays characteristics of a high-functioning autistic individual, one who is more reserved but highly intellectual.

They are close friends with Genet, the maid Rosina’s daughter. When military riots break out, Genet’s father Zemui is killed, shattering the lives of Genet and Rosina. Hema takes Genet in like a daughter, but when Genet and Rosina travel to their homeland, Genet returns as a rebellious adolescent woman. Marion insists that he is in love with Genet, eager to marry her and saving his sexual initiation for their wedding. He resists the temptation of the Staff Probationer, and he is shocked to learn that Shiva has already lost his virginity. When Genet learns this, she convinces Shiva to sleep with her. In exchange for Rosina’s promise not to tell Hema, Genet agrees to be circumcised but ends up in the hospital due to infection. This series of events strains Marion’s relationship with both Genet and Shiva, and he buries himself in his medical studies.

Genet’s rebellious activities continue in medical school and eventually force Marion to leave Ethiopia for America. He establishes himself in a marginal hospital in New York, coincidentally coming across his own father, Thomas Stone. They slowly build a relationship with one another, and Marion is able to fulfill Ghosh’s wish and convey his profession of friendship. Marion encounters Tsige in Boston, and Genet approaches him for help. As promised, Marion loses his virginity to Genet, who stays for a few days fresh out of prison. She leaves as suddenly as she had appeared, and Marion later finds out that she has infected him with Hepatitis B. Marion’s health unravels, and he is in desperate need for a new liver.

Shiva, who has now established a name for himself as an ob/gyn, and Hema arrive in response to Stone’s telegram. Upon realizing the seriousness of Marion’s health, Shiva does some research and insists on donating part of his own liver in order to save Marion. He makes the decision upon realizing that Marion would have done the same for him. Although the operation is risky as the first of its kind, Hema implores Stone to complete the surgery for the boys have never been his sons. While at first the surgery appears to have been a success, complications ultimately result in Shiva’s death. Marion lives on, and he finally finds the lost letter written to Thomas Stone from his mother.

I was incredibly interested in the transplant and its effects on the brothers. Living with his brother’s liver, Marion acknowledges the simultaneous presence of Shiva’s soul in his body. As a result, Shiva lives on through Marion, and ShivaMarion defies death for the time being. This allows the book to conclude on a more optimistic note, one that has high hopes for what the future has in store for Marion.

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Can’t Stop Reading Cutting for Stone by Abraham Verghese

I embarked on the journey of reading Abraham Verghese’s novel Cutting for Stone this week, a task not to be taken lightly when more than 600 pages are involved. This wealth of a novel brings with it an incredible complexity as it follows generations through the years.

The character Marion Stone tells the tale of his past in Addis Ababa in Ethiopia, Africa. Abandoned as orphans at birth, Marion and his twin Shiva are now raised by a gynecologist named Hema and an internal medicine doctor named Gosh. Their mother Sister Mary Joseph Praise, a surgeon’s assistant, died in childbirth while their father Thomas Stone, her surgeon, ran away upon her death. Missing Hospital was radically transformed by their departures, both by their absence and the fresh arrival of the twins. Caring for the twins brings Hema and Ghosh together, allowing them to realize their emotions of affection for each other that were buried  all along.

Although I’m only about a third through the novel, it’s amazing to me just how thorough it is. The immense number of details help to paint a complete picture of this foreign world, and Verghese tackles many issues head-on. He not only skims the surface of these themes, such as medicine, religion, Indian culture, class, and more, but he delves into them and illuminates their depths. This elegantly written novel immerses the reader into an entirely different world; it’s the kind of book that I just don’t want to put down.

Discussion Questions:

  1. What does this novel illuminate about illness from over a doctor’s shoulder?
  2. Discuss how the forces of religion and science are portrayed differently.
  3. How does Verghese successfully draw the reader into this tale?

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Imagining Immobility through The Diving Bell and The Butterfly

Hearing Jean-Dominique Bauby’s thoughts as expressed through his book The Diving Bell and the Butterfly and seeing the world from his perspective in its film adaptation simulated his experience as best it could. These are the only functions that remain under his jurisdiction: the cognitive mind for thought, the left eye for sight. Unable to move or speak, Bauby has locked-in syndrome: a mysterious cerebrovascular disease.

It was this condition that intrigued me to explore these works. Entire body paralysis, affecting all voluntary muscles of the body except for the eyes, is incomprehensible to me. Despite this bodily entrapment, Bauby’s alert mind finds a voice through the only part of his body that has retained movement: his left eye. At first, his decisions are made with this movement. Blink once for yes, twice for no. These absolute decisions become a choice between letters, and Bauby blinks to indicate the letter of his choosing. What began as a simple means of communication grows and establishes itself as a platform to create awareness of what it really means to be “locked-in.”

Bauby suffers a debilitating stroke that alters life as he knows it, establishing a new home for him in a hospital room in Berck. Bauby was a successful man, the editor of Elle magazine and a father of three. Locked-in syndrome forces him to retreat to a state of infantilism; he entirely depends on the care of others in order to exercise his muscles, to communicate his thoughts, to exist. He finds escape through his memory and his imagination, reflecting on moments such as shaving his father while fantasizing about extravagant meals. He also connects more than ever with his favorite work of literature, The Count of Monte Cristo, insisting that the main character had locked-in syndrome. Bauby’s outlook transforms through the course of the novel, as his mindset evolves from questions of “Is it worth it?” to an acceptance of his “new life in bed” (4; 129). Although Bauby passed away 10 days after the book’s publication, his life experience has continued to resonate through this memoir.

Although I thought that the film overall immersed the viewer into Bauby’s body, there were a few discrepancies that left me confused. It took me a while to realize what seemed off, but I was not fond of Bauby’s audibility. I think the film would have been more powerful if it had mirrored Bauby’s thoughts, allowing them to exist solely as words in a subtitle rather than as a voice to be heard. Amplifying his stream of consciousness through audible narration deviated from the accuracy of his experience, which I felt detracted from the film. I was also confused to see that although the film was in French with English subtitles, all the words that he spelled letter by letter were spelled out in English.

While these discrepancies hindered the film’s potency, I found studying these works in conjunction to one another to provide great insight into Bauby’s life. His book creates as space for him to tell his tale as best he can, but I do think that the film created a simulation of the “locked-in” experience. That being said, I think it’s important to note that the movie was made in 2007, 10 years after Bauby’s death. The experience simulated was adapted from his textual creation, but Bauby never had the chance to see the film, confirm its accuracy, or approve of its representation.  I wonder, how would he have reacted to this window into his life?

Discussion Questions:

  1. What are the strengths and weaknesses of narrating illness through film?
  2. What elements of Frank’s illness narrative categories can be identified in Bauby’s text?
  3. How does Bauby’s unique method of communication shape his narrative?
  4. Why the diving bell? Why the butterfly?

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Appreciating the Honesty of Audre Lorde’s The Cancer Journals

After encountering numerous sneak previews of Audre Lorde’s The Cancer Journals in my preliminary readings about illness narratives, I had high expectations. And Lorde certainly did not disappoint. I was incredibly impressed by the true poetic beauty of her writing, the honesty of her exposure, the infallible strength of her will. Her character was moving: her possession of breast cancer and her strong, dedicated commentary about prosthetic breasts, about being a “Black, lesbian, mother, warrior, woman,” about being herself (92).

Through post-mastectomy journal excerpts, Lorde takes the reader along her journey with cancer. She acknowledges the need for language to escape the comfortable but inadequate confinements of silence, claiming that “what is important to me must be spoken, made verbal and shared, even at the risk of having it bruised or misunderstood” (17).

She explores her arrival at the decision to have the mastectomy and the love and support of women who enabled her to endure the procedure and the pain. Lorde resists the prosthetic breast, instead allowing herself to acknowledge the loss of her right breast, to examine its absence, and to accept. She powerfully critiques the prosthetic breast and plastic surgery breast reconstruction, calling attention to greater social flaws in the perceptions and expectations of women as objects of attraction. Lorde boldly makes claims that invite a pause, a reconsideration of the present rather than a blind acceptance of the way things are.

Lorde has been a source of inspiration to many: Blacks, women, lesbians, aspiring writers/poets, cancer warriors, and more. The powerful prose in The Cancer Journals leaves no question as to why this book resonated with so many and still does today. As the first of its kind, the first to take a step back from conventional depictions of illness through the triumph narrative, this book does not shy away from the truth of Lorde’s pain, even if it is alarming and painful to experience as a reader.

Within the eloquence of Lorde’s writing, two repeated phrases stood out to me. Lorde referred to “america” many times (ex. 77). Not “America.” “america.” Each time I did a double take, left with an unsettled feeling as though something wasn’t quite right. There was something extremely jarring about her conscious choice to resist this conventional norm, to be aware of it and to decide against abiding by it. In deflating the capital A, Lorde powerfully disregards the power attributed to America as a nation such that it becomes just another word on the page. The persistence of her power, in many ways shaped by her encounter with cancer, is repeated throughout her journal and her reflections: “once I face death as a life process, what is there possibly left for me to fear? Who can ever really have power over me again? (63). Through The Cancer Jounals, Lorde finds a way “to be of use” (50).

Discussion Questions:

1.      Excerpts from Lorde’s journal of the past are interspersed with her reflections from the future. What are the effects of this on the narrative? Does it distort the narrative?

2.     Why might Lorde consistently disregard the capitalization of America?

3.     How has the breast cancer movement and experience been revolutionized and transformed by Lorde’s book?

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Healing Wounds in David Small’s Stitches

After attending the Tell Me A Story Symposium last week that highlighted the powerful place of illustrations in storytelling, I was able to take a step back and approach David Small’s graphic novel Stitches with a more open mind. In this memoir, Small takes the reader leaping from memory to memory. He introduces his nuclear family, which consists of an overbearing to the point of violent father, a stern but silent mother, and a drumming brother. From the story’s beginning at six years of age, there is something off about Small, and his father aims to rectify his son’s character. Small recalls spending time with his abusive grandmother and the traumatizing experiences he endured both physically and mentally. Flash forward: eleven years of age. Small’s growth is discovered, but the family responds in denial and neglect. His mother initially fears the doctor’s bills more than the growth itself, and the doctor’s reassurance that it is no cause for alarm allows it to fall lower and lower on the family’s priorities. Finally, Small has not one but two surgeries; while he entered the hospital with a additional growth on his neck, he emerges with a vacancy of vocal cords replaced by nothing but stitches. Confused, Small eventually discovers that his condition had a name: cancer. His parents had chosen to keep the identity of his illness confidential from him.

Although Small’s stitches may remain in tact, his wounds reside much deeper than the surface of the skin. His life begins to unravel until a therapist, the white rabbit, opens up a space for communication that provides him with relief and allows him to address the inherent tensions with his family. As Small improves mentally, these tensions begin to take their toll on the family as his grandmother is sent to an asylum and he encounters his mother engaging in a lesbian act.  His father pulls him aside, finally admitting that Small’s cancer was a result of his own father’s radiation experimentation in his childhood. At sixteen Small is out making a name for himself as an artist, when a call informs him that his mother is dying. He visits her on her death bed, powerfully resting his hand on hers as a sign of peace.

As the first illness narrative that I have encountered in the form of a graphic novel, I found the illustrations to be particularly gripping. Not only did they really bring to life Small’s tale, especially since he hints at his artistic aspirations in the story, but also because images hold a different kind of power than words. Small’s depiction of his voiceless life was intriguing. I was also fascinated by the intertextuality of the Alice in Wonderland story and the White Rabbit’s guest appearance as a therapist. By coupling powerful language with jarring imagery, Small achieves an evocative graphic novel memoir that moves readers beyond typical limits.

Discussion Questions:

  1. What did the genre of graphic novel bring to this illness narrative?
  2. How might the genre of graphic novel affect the audience of this tale? Under what circumstances might this be a more effective medium than other genres?
  3. What were some moments when images resonated and were more powerful than their linguistic counterparts may have been?

 

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The Closing of the Bell Jar

While the first half of The Bell Jar introduces the reader to the character of Esther and the world she inhabits, the second half truly allows the reader to witness firsthand how Esther’s mind unravels as depression takes its toll on her. Esther meets Dr. Gordon, who insists on administering shock therapy when talking results in no improvements. The experience of shock therapy feels like slumber when done correctly, but Esther’s consciousness during parts of the shock therapy leaves her traumatized despite her external appearance of recovery.

Life goes on, but Esther’s depression lingers as she is consumed by suicidal thoughts. She contemplates and half-plans a variety of attempts: cutting herself in the bathtub with a razor blade, drowning in the depths of the sea, hanging herself with her mother’s bathrobe drawstring. She becomes aware of her body’s physiological desire to live, and its resistance to her suicide attempts. Finally, she finds her answer in her mother’s sleeping pills, and she overdoses within the comfortable confines of the cellar.

Miraculously, her groans give away her hiding spot and Esther’s mother finds her. She is initially admitted to the state hospital, but her sponsor Philomena Guinea has her transferred to a better private hospital. While taking insulin injections, Esther spends time with Valerie and Miss Norris before Joan, the girl that Buddy once took to a school dance, is admitted as well. She establishes a good relationship with Dr. Nolan, and gets moved up to Belsize with Joan, the final step before she reenters the real world. Although Dr. Nolan had initially assured her that she would not have to receive any more shock treatment, Dr. Nolan stands by Esther’s side and makes sure that it is done properly.

As winter semester draws nearer, Esther seems to be doing better. She gets fitted for birth control and loses her virginity to a professor named Irwin, but she feels pain rather than pleasure and bleeds tremendously. Joan helps her to the hospital, but this emergency seems to traumatize Joan for she hangs herself just a few days after. The novel draws abruptly to a close, just as Esther enters into a room full of doctors to demonstrate her readiness for restitution.

Although I knew that this was a book about mental illness, the intensity of Plath’s writing and the pain of experiencing Esther’s suicidal thoughts took me aback. My experiences of reading the novel in many ways seemed to parallel Esther’s experiences of coping with mental illness as embodied by the metaphor of the bell jar. There were times, particularly as she described her elaborate suicide schemes, where I felt as though a bell jar was enclosing around me. I was overwhelmed by the naked honesty and bold vulnerability of Esther (or Plath, if interpreted autobiographically) as she exposed her mind in such an unhindered way. Interspersed amongst these painful passages of depression were moments when Esther was doing better, and it was at these times that her personality shined through, other aspects of her character came to life, and I could feel the bell jar lift from around me. This speaks to Plath’s incredible success at capturing her experiences and illuminating mental illness by carefully crafting language.

Discussion Questions:

  1. How does Esther’s depression manifest itself in the writing style of the second half of the novel?
  2. What is the role of supporting characters, particularly other psychiatric patients, in exposing the psychiatric ward? How do these interactions influence Esther?
  3. How does viewing the novel through an autobiographical lens illuminate certain aspects of the plot and the language and eclipse others? An illness narrative lens?

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Entering the Mind of Esther: Plath’s The Bell Jar

In Sylvia Plath’s The Bell Jar, the reader enters into the mind of Esther Greenwood, an Honors English student who works in fashion and an aspiring poet studying in New York. Living in the Amazon hotel with other college girls, she has many adventures from going out with Doreen to getting food poisoning from a food tasting event. Esther is a hard worker who has no dreams of getting married, and she enjoys going out on dates and meeting men with unique names.

We learn about Buddy Wilkins, the man who was once her love interest; now that he loves her in return, she has unearthed his flaws of hypocrisy and is no longer interested. Their relationship grows as Buddy introduces her to the life of a medical student and she exposes him to the world of poetry. He admits to her that he has known one other woman, and this knowledge makes Esther feel inexperienced and uncomfortable with his innocent façade. Illness brings their accelerating relationship to a halt: Buddy has TB and is sent to a clinic in the mountains.

When Esther accompanies his father to go visit him, Buddy proposes to her. Esther denies him, claiming that marriage is not her plan and using her neuroticism as a scapegoat. Buddy, however, insists persistently in being with her, and the conversation lingers. He takes her skiing for the first time and she breaks her leg.

Time jumps forward, and Esther is heading home for the summer, eagerly awaiting her acceptance into a summer writing program at Boston. She had been confident and expectant about the course, and the news that she has been rejected is earth shattering to her. She is trapped at home, and she struggles to escape the tragedies of her situation by fantasizing about the future. Things take their toll on her, and her inability to sleep or read leads her to the family doctor; she refers Esther to a psychiatrist.

Discussion Questions:

1.     How does the disjointed dimension of time illuminate the narrator, Esther?

2.     Through the juxtaposition of Esther’s passion for poetry and Buddy’s interest in medicine, what does Plath reveal about the intersection of these fields?

3.     How do metaphors and similes function in this narrative? How do they enhance or complicate the reader’s understanding?

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Insectifying Illness in Kafka’s The Metamorphosis

In Franz Kafka’s The Metamorphosis, Gregor wakes up to find that his “anxious dreams” are in fact reality: he has been changed into a “monstrous verminous bug” (1). Late for work, he struggles to free himself from the confines of his bed but is unable to escape. His family begins to knock anxiously on his door, and his manager scolds him angrily for his tardiness. Gregor tries to respond in self-defense, but he can no longer speak in words and is not understood by the others. With great effort, Gregor makes his way to the door; at the sight of Gregor, the manager departs hurriedly and the family stands aghast.

Gregor’s ill state has been established, and he is kept in his room. His sister feeds him and takes care of him eagerly at first, keeping his room clear so he can crawl around. His father seems to stay strong in denial while his sensitive mother pines. Gregor hides from his family by situating himself under the couch and shielded by a sheet. On one occasion, Gregor’s mother faints at the sight of her son and Gregor’s father lashes out at him, throwing apples that result in an immobile state of injury for Gregor.

Since Gregor had been the primary breadwinner for the family, each family member is forced to step up and take on new responsibilities for pay. The family takes on three tenants to help pay for rent. When they see Gregor, they immediately decide against the lease, disgusted by the familr. For the Samsa family, this is the last straw. Gregor is no longer a “he” but an “it” instead, which allows them to forfeit their claim and responsibility for him. That night, Gregor dies. Gregor’s death frees the Samsa’s, for their lives no longer need revolve around him, and they are able to return to a state of normalcy.

I have always found Kafka’s works to be incredibly compelling, and this one certainly did not disappoint me. One of the things that I found to be most fascinating was the role of the 3rd person omniscient narrator. Although the story seemed to be told through the eyes of Gregor, the narrator was not inside his head but rather an objective observer. I felt that the narrator’s intimacy with Gregor was transformed just as Gregor’s own transformation evolved throughout the novella. As Gregor’s insect identity became more and more consuming, the narrator joined the Samsa family in distancing himself from Gregor. If anything, this shows just how isolating Gregor’s insectification really was- even the narrator who is telling his story abandons him.

Discussion Questions:

1. What parts of the text can be identified as representative of a chaos narrative? A quest narrative? A restitution narrative?

2. What words does Kafka use to allude to Gregor’s insect-like state?

3. What is the effect of the 3rd person narrator? How does the narrator’s stance evolve throughout the novella?

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The Art of Illness

What I find fascinating about the idea of using art to express the illness experience is that it translates the physical and mental components of illness into a visual image. While some illnesses are often visible, others remain invisible. Art has the power to visually illuminate the visible and unveil the invisible.

As I explored artistic depictions of illness, I found that art seemed to be used in three main ways: to encourage another person’s illness experience, to express one’s own illness experience, and to depict the illness experiences of others.

Fiber Arts and Loose Ends includes a series of quilts created as tributes to survivors, an uplifting collection for sufferers. While some are more abstract, including depictions of plants used in cancer treatment, others incorporate language into this artistic medium. Words of Love by Annabel Ebersole incorporated the words “Courage,” “Love,” “Faith,” “Belief in Miracles,” “Hope,” and “Trust.” These encouraging words reminded me of the triumph narrative, but they also embody an optimistic take on the quest narrative.

While art is sometimes turned to for relief and encouragement, it can also be used as a space for self-expression and release. William Utermohlen used art as a form of narrative, to tell the tale of his transformation with Alzheimer’s. His drawings reflect his gradual loss of self and identity through the distortion of his facial features. Incorporated colors seem sporadic (the fourth drawing in particular seems to reflect the chaos narrative), until ultimately Utermohlen has become a faceless black and white charcoal sketch.

In addition to providing support for the ill, art can be used to spread awareness to the well. The Scar Project is a particularly powerful photography collection of breast cancer survivors, especially depicting women who have had mastectomies and are redefining the female body. With the motto “Breast Cancer Is Not A Pink Ribbon,” these works are a direct resistance against the pink ribbon that has become the face of breast cancer (and is also a form of the triumph narrative). These works also revise the restitution narrative of breast cancer by suggesting that rather than a return to normalcy, breast cancer can result in a redefinition of the female body and female identity.

Just as Frank’s narrative categories often overlap and intertwine elements of illness, art seems to transform and evolve illness, achieving a multiplicity of narratives within a single work of art.

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Concluding Ideas about Frank and Conway

In the second half of Illness and the Limits of Expression, Conway explores the literary methods of metaphor, narrative form, and endings. While Sontag critiques metaphor as something that confines individuals within stereotypes, others see metaphors as necessary to come as close to an accurate representation of the illness experience as possible.Narrative form often strives for linearity, a beginning, middle, and end; individuals seek to construct this sense of coherence but also to expose the interruptions and interjections caused by illness.

Conway discusses the complexity of the ending, and how there is often a desire to end on a happy note. Some authors feel themselves gravitating towards this triumphant conclusion, but they catch themselves in time to adopt an ending that is better suited with the rest of their narrative.

After laying out a basic foundation of illness narratives, Frank delves into his three types of illness narratives: the restitution narrative, the chaos narrative, and the quest narrative. He argues that illness narratives often contain elements and moments of each of these perspectives, and he explores the defining characteristics of each [see table].

The restitution narrative focuses on the conclusion of illness, the ultimate victory over illness, an individual’s reintegration into society and return to the normalcy of everyday life. The chaos narrative claims that “chaos is told in the silences that speech cannot penetrate or illuminate”; thus, the chaos narrative is an anti-narrative that highlights the interruptions caused by illness (101). The quest narrative focuses on the temporal enactment of the illness experience and an individual’s transformation over time.

Frank explains how these narratives coexist and intermingle to compose the illness experience. He toys with the idea of patients as witnesses to illness and illness narratives as a kind of testimony. The concluding chapter explores suffering, for “all illness stories share a common root in suffering as ‘an existential universal of human conditions’” (170). He relates suffering to illness narratives by showing how both telling and hearing stories has the power to heal.

This table outlines the 3 types of illness narratives. Click to enlarge!

Types of Narratives

Discussion Questions:

1. What literary characteristics of an illness narrative can hint at a shift in the type of narrative? For example, what syntax, diction, etc.?

2. How does classifying the narrative type affect the analysis of an illness narrative?

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