Reflecting and Reframing: Becoming a .com site

The past month has been a flurry of wrapping up the semester and delving into the medical school application process, but I’ve also felt as though I was suspended within a strange state of liminality. I’ve been trying to define my research in the immediate future, but I’ve also been looking beyond that to try to figure out what I hope to accomplish with my passion for illness narratives and how far I can take it through my career in medicine.

I’ve come to realize that ultimately, my primary goal is to become a practicing clinical physician: currently, I hope to be a pediatric oncologist, but I recognize and accept the fact that all that may change in medical school. At the same time, the deeper I delve into the intersection of literature and medicine, the more aware I become of the illness narratives that surround our culture, the more I realize that this semester-long independent study barely scraped the surface. Although I sampled the genres of illness narrative theory, short story, novel, autobiography, memoir, poetry, art, dance, film, and more, there is just so much more for me to explore.

My interest in illness narratives is three-fold: learn, research, teach.

  1. LEARN: Studying illness narratives has helped me to better understand the experience of illness, and I believe that this exploration is vital to making me a better physician.
  2. RESEARCH: Making sense of existing illness narratives and conducting research to promote the generation of new ones has helped me to understand literature, to understand medicine, and to understand their intertwinement.
  3. TEACH: Exposure to illness narratives has entirely changed my understanding of medicine, and I believe that this awareness and perspective is crucial for prospective doctors, so I hope to share my knowledge about this field with others and to promote the general education of illness narratives.

Through all this, it’s become clear to me that no matter where I go for medical school, I am entirely keen on continuing to study illness narratives. And I’ve realized that I can share the process of learning, researching, and teaching in this field with others through the wonderful world-wide web. And so, my blog has abandoned the ‘.word press.’ in favor of simply ‘.com.’

My blog has always been for me, a somewhat personal space where I can reflect naturally, and I hope to preserve my original intent with an added twist. I never wanted to publicize my blog because I was writing only for me, but as I’ve watched people from around the world stumble across it, I’ve realized that there might be other illness narrative enthusiasts who just haven’t quite found the field yet. By turning my blog into a website (I still can’t believe the domain name was even available!), I hope that I can create a centralized space based on the familiarity that I’ve gained with the field.

Six months later, my journey is just beginning. And I’m excited to see how this narrative unfolds.

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The Genesis of Illness Narrative Research

For 5 years, I have spent my Friday evenings volunteering with pediatric oncology patients at Mott Children’s Hospital. I admire these children, and their abilities to cope with their situations astound me. I have been fascinated by coping activities such as the Beads of Hope activity, where children make a necklace with beads that each represent a hospital procedure or milestone event in the course of their treatment. These activities give children an outlet to talk about their illness and to tell their story. By spending time with these patients, I have come to greatly value efforts to improve the patient experience and to support these children through their illnesses.

When I came to college with a fascination for medicine and a love for literature, I was uncertain about how to pursue both. I discovered the field of narrative medicine that embodies both these interests: it encourages an exploration of the “and” between literature and medicine. I am fascinated by how literature enables patient expression and provides others with insight into illness. As I explored illness narratives through an independent study, I became interested in studying the illness narratives of children with cancer for my thesis. There seemed to be a void of published narratives written by kids with cancer, and since I am fascinated by the therapeutic nature of the writing process, I crafted my own research project to approach these ideas. My research project is designed to give children the opportunity to explore the mediums of writing, drawing, and speaking to express their experience with cancer.

In the early stages of the project, I talked to individuals from a variety of disciplines in order to shape this interdisciplinary research. Scholars and researchers in the fields of English, Anthropology, Psychology, Child Life, Pediatric Palliative Care, and Pediatrics Hematology/Oncology all provided invaluable input to help me shape this project. I reached out to MPublishing through the UM Medical School to ensure that participating children will be even be provided with the opportunity to publish the narratives that they create in a compiled book.

The current status of this project is that with the help of my pediatric oncologist PI, Dr. Rajen Mody, and my faculty advisor, Melanie Yergeau, the IRB application has been submitted to IRB-MED. This project has received funding through the Honors Program in LSA and the English Department. The months of May and June will be spent developing recruitment materials and preparing for data collection, which will begin in July. The project will be an ongoing two year study and is estimated to include up to 100 patients. Narratives created in the months of May and June will be compiled and published as a narrative collection by as early as the end of 2013, and I hope that we can create multiple collections throughout the course of the study.

As an aspiring pediatric oncologist, I am incredibly excited to have the opportunity to conduct this research. I believe that not only will patients benefit from this therapeutic means of expression, but the created narratives will illuminate the experience of childhood cancer. This research will allow health professionals, parents, and even other children with cancer to better understand the illness. I look forward to interacting with these patients and using a literary lens to better understand their illness experience.

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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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“Exchanging War Stories”

Today at volunteering, two girls were doing Beads of Hope . I have always been intrigued by this activity, where children string beads that represent each monumental moment in the course of their treatment. From blood draws to surgeries, good days to going home days, these beads materialize the ups and downs of coping with cancer.

Although this activity is often done with one patient at a time, today there were two girls who had both endured many similar procedures. One was older, but the other was more outgoing and talkative. It was fascinating to observe how these hope beads served as a catalyst, encouraging these children to reflect on their past procedures and to tell their stories. Each child would try to outdo the other, emphasizing why their experiences were more admirable.

“It’s like they’re exchanging war stories,” noted one parent.

And it struck me just how right he was; that’s exactly what it was like. And I remembered that was how the study of illness narratives originated, since it was derived from the study of narratives of Holocaust survivors.

What is it about illness, especially those like cancer, that is comparable to war? I guess it is the struggle to hold on to life in the face of an enemy’s threat. But participation in war is a decision (I guess drafting suggests that’s not necessarily true), whereas illness like cancer can be an uncontrollable, unpredictable, coincidental occurrence. Battle and war imagery is a common metaphor for illness; what are the shortcomings and implications of such associations?

Beads of Hope is heart-wrenching for me to watch every time. The kids get excited as their necklaces grow longer and longer, and their challenges become more and more unfathomable. I know that these kids do not choose to face their circumstances, but nonetheless, their endurance never ceases to amaze and inspire me.

I am excited that my research will give these children an opportunity to share their war stories with others, to let their voice be heard.

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Life is Black and White and Grey

An incredibly beautiful, tragic, word-less journey. As told through greyscale photography.

The Battle We Didn’t Choose: My Wife’s Fight With Breast Cancer.

~

I don’t even feel obligated to say anything about this. It speaks for itself.

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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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Filed under Film, Independent Study, Literary Narratives, Voice

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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Rethinking a MMT of Cancer Survival

Today I came across the following on one of my favorite sites, makesmethink.com (MMT):

“Today, on my mom’s side of the family, the majority of the women have had breast cancer – many of them multiple times. But none of them have died from it. The amazing beauty and strength of the women in my family MMT.”   -Sandy

Instinctively, I can’t help but scrunch my eyebrows at this one. While I agree that it is a truly wonderful thing for Sandy’s family to have been blessed by survival, I think that the construction of her idea gives off the wrong idea and falls victim to the temptations of the triumph narrative.

Sandy draws a direct link between the survival of these women, their external appearance, and their inner strength. She paints the image of a group of attractive women whose strength allowed them to beat the odds and conquer cancer. She claims that it is these characteristics of these individuals that “makes me think.” My question is, what is the correlation between these characteristics and their successful evasion of death?

This also seems to undermine the experience of all the women who don’t survive breast cancer; does this mean that those who don’t survive did not have enough will to live?

It’s quite possible that I am entirely overthinking this, but I think that this exemplifies the importance of language as an expression of our understandings of illness. While language can be incredibly empowering, there are times when it can have subtle implications unbeknownst to us.

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