Category Archives: Voice

What are the sounds of illness?

[Inside Stories] Trisha

Although I’ve personally been drawn to the stories of people with illness and disability, I also realize that stories in medicine arise from both sides of health care. Albeit it was admittedly strange (given that I am used to being a listener to these stories), I was excited to have the opportunity to tell my own story about my experiences as a medical student and someday health professional.

Inside Stories is an oral narratives project which invites medical students to share their experiences in medical school in the form of brief podcasts published and archived on in-Training, an online medical student community.  The curator of these stories, Annie Robinson, makes space for medical students across the country to share experiences that they may not otherwise have the opportunity to share. Moreover, it seems to me as though these stories can serve a similar function as do many online illness narratives by bridging together medical students. These exemplify how stories can be used to create a community, to connect different people who may be going through similar situations in their medical training.

Take a listen! My story about medicine and about my childhood cancer narrative research.

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Filed under Chronicling Childhood Cancer: Illuminating the Illness Experience through Narrative, Voice

A Childhood Cancer take on Katy Perry’s Roar

Similar to Seattle Children’s Hospital’s performance of Stronger by pediatric oncology patients and staff, the Children’s Hospital at Dartmouth-Hitchcock did their own rendition of Katy Perry’s song Roar. This powerful video unites pediatric oncology patients, their families, and the healthcare professionals that treat them come together to sing how “you’re going to hear me roar.”

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Filed under Chronicling Childhood Cancer: Illuminating the Illness Experience through Narrative, Film, Uncategorized, Voice

My Other Voice: Giving Voice to Young Adult Cancer

On the brink of graduation and a Broadway career, cancer threatened to take Alex Kip’s voice and his life. Two years later, Kip has held on to both, and he is sharing his story through theatre.

My Other Voice is a play written by Kip about his personal experiences as a young adult with cancer, starring Kip himself. Upon diagnosis, his mind was set on recovering in time for the “silly” senior showcase that doctors didn’t understand. When Dr. Foster asks Kip’s mom to break it to him that he would not be able to participate, this responsibility lingers; when it finally reaches Kip, he becomes distraught and untrusting. Interactions with the medical realm conveyed an arousing critique, calling for greater sensitivity in medicine. For respecting what patients value most in their lives and appreciating these needs whenever possible.

Kip experiences the destruction and recreation of identity as he loses his singing voice and finds a new one. As a patient, he loses independence and his sense of control as he is forbidden to work out. Cancer’s disruptive nature into Kip’s life as well as those around him is brought to life by the realness of each character. Each person responds to Kip’s cancer differently, physically and emotionally. Their actions and coping mechanisms vary, and getting to know these nuanced personalities and witness their transformations was a resounding effect of the play. The personal nature of illness as it permeates into lives is performed.

With the intimacy of the thrust stage, the audience is immersed in the performance. With young adult dialect, iMessages, and popular rap music, we enter into the college life. We even follow Kip and his friends as they get high off magic brownies infused with marijuana. Amidst the devastation of cancer, Kip finds friendship in a fellow cancer patient. Amy redefines what it means to have cancer, explaining that “You’re a survivor the day you start fighting.” While she herself does not survive in the traditional sense, her voice remains influential to Kip. Amy’s death illuminates the emotional depth to cancer, the disease reasserting itself as a threat to vitality.

Following the performance was a talk-back session led by Dr. Ora Pescovitz, the CEO of the U of M Health System. Through an interactive conversation with performers and audience members, some of the ideas introduced by the play were given voice. The discussion revolved around the controversy of medical marijuana, critiques about the medical profession, and value for artistic therapies in patient care.  I asked Kip a question of my own:

How did the experience of retroactively narrating through play differ from writing a Caring Bridge blog throughout treatment?

Kip noted how the therapeutic process of writing began to substitute for his lost voice. He explained that in adapting his story to play form, he referred to his Caring Bridge posts and some of his private journal entries. These helped him to reconsider the disturbing, to remember the forgotten. “When I was sitting in the hospital I realized that I could use my gifts to make a different in the fight against “cancer” (UM Cancer Center interview with Kip).

Kip demonstrates how everyone can play a role in the illnesses experience. The play may conclude with Kip singing alongside his loved ones, but his revitalized voice continues to resound.

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Filed under Chronicling Childhood Cancer: Illuminating the Illness Experience through Narrative, Theatre, Voice

Listening to Conversation Narratives through StoryCorps

A polite exchange at the cash register, kind words with loved ones. An ever-present form of narrative is in our conversations, the things we say and hear from others. These conversations can be precious, but their mundane disguise can make them easy to overlook.

StoryCorps seeks to capture these interactions, to engulf the sound and language that is shared from person to person. Individuals work in pairs, one interviewing the other so-to-speak, in an honest exchange of words. Liza Long and her son engage in this dialogue as she strives to understand his experiences with Bipolar Disorder and other mental illnesses.

The context of this speaking exercise allows them to tackle topics in a different way, just as it allows listeners to hear these stories from a different perspective. This snippet of conversation seems to sharpen what we hear, or rather, what we become aware of. Long also linked to her own blog post reflecting on her experiences as the mother of a mentally ill child: “I live with a son who is mentally ill. I love my son. But he terrifies me” (Liza Long).

The conversational aura of these stories encourages people to naturally share their personal insight. I also appreciate the focus that is brought to  the sounds of stories. By stripping stories down to their spoken core, listeners are not distracted visually. We can close our eyes, just for two minutes, and focus audibly on the human voice.

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Tweeting and Grieving

140 characters has never sounded like enough to me.

But for Scott Simon, Twitter has become a concise space for reflection and reverence of his mother’s last hours in the ICU.

When I first heard about this spectacle, I was slightly appalled about the idea of invading the intimate and private space of the ICU with social media. But this article approached these tweets from a different perspective, suggesting instead that this embodies a more modern form of mourning. “The brevity and sequentiality of Twitter eerily evokes the reality of time, allowing us to witness an event” (O’Rourke).

As fascinating as this correlation between time and social media is, I believe that this statement is more eery to me than what it proposes. Perhaps it is my personal aversion from Twitter, but I disagree:  Twitter may give us a peek, but it does not enable our entire observation.

These tweets do not allow us to observe her death and its surroundings. We do not hear her breaths cease while the ICU continues to beep. We do not watch  stillness set in.

What I found to be unsettling was not the tweets themselves but rather the act of tweeting. It seems as though Twitter served as an outlet and a means of communication for Simon during his mother’s time in the ICU, a coping mechanism of sorts. I respect Simon’s choice to share his ICU experiences through Twitter. But even in 30 minutes after his mother’s death, Simon sent 3 tweets. Which means that he spent some time, maybe just a minute or so, looking at a screen and typing rather than being totally present with the loved ones around him.

It is inevitable that social media has become a space to share not only the joys and triumphs of life but also its trials and fumblings. But I wonder if this is the inherent trap to social media that we must recognize- it can become an obligation to others that draws us from the people physically around us. And with all the publicity that this happening has attracted, I was surprised to see how much of the attention has been centered around Scott Simon.

I guess I just wish that at the moment of her death, there had been more attention drawn to the person at the center of these tweets: his mother, Patricia Lyon Simon Newman.


Filed under Literary Narratives, Miscellaneous Musings, Voice

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).


Filed under Film, Literary Narratives, Theatre, Voice

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.”


Filed under Chronicling Childhood Cancer: Illuminating the Illness Experience through Narrative, Film, Voice

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