Tag Archives: Illness Narrative

July 9, 2013 · 8:00 am

One Week and Five Patients Later

It’s incredible when the long anticipated is greater than ever expected.

That’s how I feel about my thesis research. I’ve said this before, but I still can’t believe that it has come this far.

As an aspiring Pediatric Oncologist, the experience of interacting with the variety of health professionals in this realm is invaluable. But what I treasure most is the time that I have spent with each of my patients: the words exchanged, the deep inhalations, the glances away, the silences. In many ways, what cannot be captured naturally in front of a recorder are the things that I have held on to from these conversations.

The Pediatric Heme/Onc staff at Mott have all been so helpful and enthusiastic, the patients and their families kind and supportive. One of the things about volunteering with these patients for years is that not only do you never forget them, but they never forget you either. I was touched when a mother recognized me from my presence in the playroom over the years.

As I’ve begun to implement the research protocol that I designed, I’ve become grateful for the flexibility engrained in my project. Most children that I have worked with seem to prefer having a verbal conversation about their experiences before constructing their written stories, but that has not always been the case. And the age range for the study, 10-17 year olds, has proven to be more restricting than focusing. I think that to capture the spectrum of cancer diagnoses and effects, I will need to expand this to include children as young as 6 or as old as 21.

After we had completed the activity in its entirety, one patient told me that this was the most that he had ever spoken about cancer. And perhaps that is what I have been reaching for all along. As volunteers, we engage with these patients but never directly confront them about their diagnoses because that is not what is important. This activity allows me to explore  this unknown taboo, to dive in headfirst.

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June 25, 2013 · 8:00 am

Treating ALS with Joy

Illness is intertwined with narrative: its symptoms shape content, chronology, emotions, and the self. But they also shape the physical creation of narrative itself.

Jean-Dominique Bauby “writes” The Diving Bell and the Butterfly by blinking, the only physical motion that he can still control as a quadriplegic. In Until I Say Goodbye: My Life Living with Joy, Susan Spencer-Wendel “writes” an entire 363 page novel with her right thumb in the Notes application on her iPhone: ALS has weakened all her other fingers. And to (attempt to) wrap my mind around this, I have written this post in the same way.

ALS: Amyotrophic Lateral Sclerosis. Also known as Lou Gehrig’s disease. With the slow death of motor neurons comes deteriorating muscle, loss of motor control, and eventual death of the victim.

After months of ignoring her inactive left hand, Susan Spencer-Wendel’s official diagnosis leads to her own inevitable acceptance. Denial of the disease disintegrates along with her muscles.

Finally facing the grim future of terminal illness, Spencer-Wendel makes a commitment: to live her last years in joy. To “dwell in what their remains to be grateful for” (293). To accept, even embrace her illness.

Spencer-Wendel retraces her past and resolves mysteries about her adoption by befriending her birth mother and traveling to Greece, the land of her deceased birth father. She boldly travels to places new and old: Alaska with her best friend, to see the Aurora Borealis. Hungary with her husband, to reminisce in the land of their newlywed days. And a series of trips with the kids, to create memories that will last for a lifetime, even if their mother will not.

But amongst these exciting adventures, Spencer-Wendel must quit her job, abandoning her identity as a courts reporter for Palm Beach Post. She has to forfeit the responsibility of picking up her kids from school, from driving all together, because her unpredictable loss of control has turned her into a safety hazard.

Spencer-Wendel finds a way to share her experiences with ALS and joy through her passion for writing. She sets out to write “a book not about illness and despair, but a record of my final wonderful year” (21). While understanding that her journeys arise from the crippling terminality of ALS, she appreciates them for what they are.

What I love about Until I Say Goodbye is that you don’t have to be near “goodbye” to leave this text with a refreshed perspective on life. Illness is a life-altering event for victims and their supporters, but through narrative, it can extend it’s reach. Illness narratives can resonate with more than just the ill, but also with the well.

“Serious illness can change you…or simply reveal who you are” (144). Illness may have been a catalyst, but Spencer-Wendel realizes that these dreams, these journeys, have always been a part of her. She challenges us to take a step back, to reflect on how we live our lives. And, as she reminds us throughout the novel, “smile” (78).

“We can despair. It’s what we summon after the tragedy- the tenacity- that matters” (247). For Spencer-Wendel, that tenacity is the joy of life.

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June 17, 2013 · 9:00 am

Beyond the Face of Illness in Lucy Grealy’s Autobiography of a Face

Although Lucy Grealy’s title Autobiography of a Face suggests an emphasis on her physical transformation in response to cancer, I believe that her novel feels more like an Autobiography of a Soul. As a child, she was diagnosed with Ewing’s sarcoma; for her, cancer of the jaw bone. But rather than focus on merely the corporeality of her cancer, she expresses its indirect, internal invasion of the self through written word.

Grealy seeks refuge in the attention she receives in the medical sphere, a space that imperfectly fills the void created at home. In writing, she travels through her life experiences and allows the reader to explore the inner depths of her mind as she retrospectively relives the past. She discusses her traumatic experiences with cancer:  unforgiving treatments of chemotherapy, radiation, and surgery; the futile persistence of reconstruction.

Although initially unaware of the implications of such an illness, her maturation over the years enables the appearance of psychological scars. Grealy defines her burden of depression, her feeble sense of identity, her struggle to conceptualize and cope with beauty, her hopeless disregard and perpetual desire for love.

Cancer certainly provides a backdrop, or rather a catalyst, for Lucy Grealy’s story, but her story is so much more.  Woven through her work is a thread of tension between her external and internal persona, between her face and her soul. The disjunction between these situates her within struggles larger than the physical disease. 

What struck me is that Grealy makes a point of resisting an illness narrative understanding of her story. Instead, she regards cancer as “not the part of the story I’m interested in” (230). Unlike a majority of patient illness narratives, Grealy is a writer. Her profession has shaped her grasp of language and eloquent creation of memoir (or recreation of memory).

This raises the question: to what extent should a narrative about illness be defined as such, and how does it artistically escape this narrow scope? What I mean is that yes, Grealy discusses how cancer affected her life, but does this focus overshadow the merit behind her novel as a written work? Ann Patchett summarizes this powerfully: “Certainly, Autobiography of a Face can be read as an account of a child’s cancer and disfigurement…but it can also be read as it was written: as a piece of literature” (232).

Grealy demonstrates that although narratives can indeed provide great insight into the experience of illness, this does not qualify a general ignorance of what lies in the periphery. Creators such as Grealy recognize the illness experiences conveyed through narrative and the others that escape narrative; readers must do so as well. Grealy notes the empowerment and limitation of language:

“Language supplies us with ways to express ever subtler ways of meaning, but does that imply language gives meaning, or robs us of it when we are at a loss to name things?”

Illness narratives are about more than illness; only in understanding the more can we arrive at an understanding of the illness.

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June 10, 2013 · 8:00 am

The Power of W;t

“Hi. How are you feeling today?”

It’s a question often asked, from within and outside the medical sphere, whose answer is rarely sought. Margaret Edson’s play W;t acts out the life of Vivian Bearing, a 50-year-old English Professor who enters into this space with Stage IV Ovarian Cancer. Vivian tells the story of her last few months in the face of death. She reflects on significant moments of her life thus far, remembering her development as an English scholar and teacher. Simultaneously, she observes her new surroundings in medicine, sharply but calmly noting the inadequacies in her care. As alluded to from the beginning of the play, the curtain closes with Vivian’s death.

Edson’s text is clever and precise, and the play comes to life when peopled in the movie. The intertextuality of John Donne’s Holy Sonnets and medical terminology was skillfully done. Edson draws a resonating parallelism between Vivian’s life as a scholar/professor and Jason’s life as a researcher/doctor, both who have strived for academic success at the expense of a simple sense of humanity.

Within her 8 cycles of chemotherapy that the doctors monitor to keep track of time, Vivian instead constructs a timeline based on the accumulation of losses. The vomiting side effects of chemo lead her to realize that “You may remark that my vocabulary has taken a turn for the Anglo-Saxon” (32). When she is trapped under isolation precautions, she recognizes the paradox: “I am not in isolation because I have cancer…No, I am in isolation  because I am being treated for cancer” (47). As her condition worsens, Vivian becomes aware of her inevitable fate and the true purposes of her involvement in research.  She feels objectified, having become “just the specimen jar, just the dust jacket, just the white piece of paper that bears the little black marks” (53). Her identity as a scholar, which she reiterates proudly throughout the play, disintegrates along with the fast-growing cells that are killed by chemotherapy: “I’m a scholar. Or I was when I had shoes, when I had eyebrows” (68).

Perhaps my favorite textual moments were the simultaneous dialogues, located side-by-side on the page. These surprised me, and I was unsure how to read them because it was impossible to read and follow both at the same time.While the movie did not create these scenes as I had imagined them, it created a sense of coherence between scenes. Vivian’s memories were integrated into the present, as she would enter into her past wearing nothing but a hospital gown and then bring her past encounters straight into her hospital room. This maintained the dynamic nature of these memories as not merely remembered but relived in the now. 

Although I often imagine what I read, nothing could have prepared me for what it felt like to have Vivian look straight at me from behind the screen in the movie version. She held a hard, steady gaze with the camera, and these close up shots of her face highlighted her humanity and the harsh effects of cancer treatment. And the sounds- Vivian’s emotional breakdown as she nears her end is hard to enact mentally without the sounds of her crying, her fear, her pain.

While the movie seemed to be pretty true to the script, I was surprised by how differently the movie ended as compared to the play. Both end pretty compelling with a young doctor’s mistake, but the movie leaves Vivian trapped inside her hospital bed. In the play, Vivian is able to step out of her bed and embark towards the light. She attains a sense of liberation from 8 months of chemotherapy bondage, slowly shedding the material elements of her identity as a cancer patient. Her cap. Her hospital ID bracelet. Her hospital gowns. The play allows her to die powerful, while the movie strips her of that opportunity.

Cancer has successfully taught her to suffer. Her entire life’s work loses its worth as she recognizes “Now is not the time for verbal swordplay, for unlikely flights of imagination and wildly shifting perspectives, for metaphysical conceit, for wit.. now is a time for simplicity. Now is a time for, dare I say it, kindness” (69).

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May 22, 2013 · 8:00 am

In Honor of Zach Sobiech

An incredible kid with an inspirational story about living life in the face of death:

For Zach, “life is really just beautiful moments, one right after the other.”

Faced with the terminal diagnosis of osteosarcoma, he realized that “my closure is being able to get my feelings into these songs.” Zach’s own illness narratives took the form of music.

Zach died this past Monday, “fly[ing] up a little higher.”

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May 20, 2013 · 8:00 am

ICD Connection: Illuminating the Patient Experience

For months, I have been eager to read ICD Connection: Living with an Implantable Cardioverter Defibrillator: A Collection of Patient & Family Stories. I’ve heard so much about this book through working at the UM Medical School, and it’s been exciting to watch UM transform these works into a published creation that gives ICD patients a voice.

ICD stands for Implantable Cardioverter Defibrillator. “It is a device smaller than a deck of cards that is implanted under the skin to treat life-threatening heart rhythms that can lead to sudden cardiac arrest” (McFarland: Pelosi i). While the ICD certainly saves lives, policing the heart’s every  heartbeat, it brings with challenges of its own. This is what the patients and families featured in the ICD Connection book aim to illuminate.

The idea behind this book came from the Young ICD Connection event, which brings together people from around the country who are living life with an ICD. This event inspired Helen McFarland, a nurse who has worked with ICD patients for years, to create this compilation of stories. She was eager to explore the psychological and social side effects of the ICD, to enable patients and families to tell their stories to have their voice be heard.

I must say, this collection has been one of my favorite set of illness narratives. The honesty and authenticity of these stories and the genuine intentions behind writing them shine through, empowering this collection to have resounding effects on any reader. Each short story was unique and moving, and the writers brought incredible insight about their own lives and the ways that the ICD had affected them from within. These stories reflected the perspectives of boys and girls, men and women, dads, husbands, and daughters. I loved the eclectic selection of experiences that all seemed to supplement each other but also stand apart. For example, the pairing of Erika’s perspective of having an ICD with Bryan, her husband’s perspective of her ICD, was interesting to explore.

Amongst many powerful ideas, I found one statement that seemed to reflect the foundation behind this book. “Emotional roller coasters are a very normal part of any health challenge, and every patient has a right to feel however he or she feels and work through those emotions in whatever way he or she needs to. No one is the same, and no one deals with anything exactly the same” (McFarland: Lisa 85-86).

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April 14, 2013 · 2:00 pm

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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April 2, 2013 · 9:21 pm

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.

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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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March 27, 2013 · 6:08 pm

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?

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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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February 27, 2013 · 2:00 pm

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.

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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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