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

A Dance to Fix You

Healing is an intimate process, both for those being healed and for their healers. I choreographed this dance to the song Fix You by Coldplay to commemorate the intricacies of the healing process, particularly for those surrounding the sufferer. Illness may isolate the self, but it can often unite others.

From family and friends, physicians and nurses, therapists and chaplains, there are numerous individuals who dedicate themselves to this cause: to “try[ing] to fix you.” This performance honors these individuals, recognizing their independent contributions. It illuminates the parallels across these different efforts, revealing how these different methods of healing are in fact synchronized. Similar motions are performed with unique takes by each dancer and each healer. Reducing pain with Oxycodone, alleviating emotional unraveling through art. Finding solace in spirituality.

Healing is a collective effort, just as dancing; collaboration demands a conversation of sorts that is embodied here in movement. Each must share their insight and showcase their strengths while recognizing what to forfeit in favor of healing the mind, the body, and the total self. Considering the nutritional imbalances imposed by antidepressants, the psychological side effects of surgical disfigurement. The limitations to restoring normalcy.

There is dynamism to healing. There are trying times and moments of liberation, symbolized by movements high and low. There are bursts of chaos and body rolls, unexpected outcomes and relapses, but there are also breaths of peace demonstrated by graceful releases of the body and sustained poses. Recoveries.

This choreography and its performance demonstrate that healing vitalizes all involved, as it “ignite[s] your bones.”

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Filed under Dance

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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Pondering Prepositions: Medical Humanities and Narrative Medicine

Rooted in the essence of humanity, health and medicine are inherently interdisciplinary. How are these fields intertwined with others? We express this entanglement through prepositions, mumbled words that can resound with significance.

Take, for example, literature. We can consider literature in/and/of medicine. There is a prepositional choice that we can make, one that urges us to consider the angle of our approach. We can do the same with other media forms like art.

In: Medical literature is present in medical education lectures, in research publications, in patient charts. Medicine has established an entirely different language with its own terminology, one that can manifest itself as a form of literature through scientific writing. The clinical practice of medicine is a dialogic exchange, a narrative. My understanding is that this area of study is largely encompassed by the field of Narrative Medicine, one that notes the literary merit of the medical practice.

Of: Literature has long been fascinated in the practice of medicine, its accomplishments and its qualms. There have been  writings about medicine for centuries. Some are the stories of  medical practitioners like William Carlos Williams, Oliver Sacks, Danielle Ofri. And others are written about the medical sphere from afar, such as the works of Ken Kesey, Elizabeth Moon, Sinclair Lewis. These literary texts seem to be the focus of Medical Humanities, which explores medicine through a literary lens.

And: I claim that this blog explores the intersection of literature and medicine: the ‘and.’ This intersection, however, is certainly a grey area. The ‘and’ balances the two fields, literature and medicine, declaring them as separate studies equal in merit. This introduces the idea that perhaps, because these are distinct, each has something to learn from the other. Maybe scholars can develop reading, writing, and critical thinking skills by confronting the medical profession through literature. Or analyzing literature can instill in health care professionals a different kind of care and compassion. The former feels more like Medical Humanities, the latter Narrative Medicine.

Prepositions

I believe that this is the realm shared by both Medical Humanities and Narrative Medicine. I’ve found that this grey area can be largely open to interpretation, but only through dissecting the fundamental threads within can we make sense of these fields and assemble these perspectives together.

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Filed under Narrative Medicine Research

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.

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Filed under Literary Narratives, Miscellaneous Musings, Voice

Illness Narratives, Medical Humanities, and Narrative Medicine

For the past few months, I’ve been on a mission to understand how illness narratives fit into the broader world of academia. I’ve encountered two primary schools of thought: Medical Humanities and Narrative Medicine. By talking to a variety of scholars in both fields, I’ve been trying to decipher how these fit together and what distinguishes them from one another. This is an introductory post to these concepts; throughout a series of posts to come, I hope to share some of my ideas about each of these fields, how they intersect, and where my own explorations of illness narratives may fall.

Narrative Medicine vs. Medical Humanities

Medical Humanities is “an interdisciplinary field of humanities (literature, philosophy, ethics, history and religion), social science (anthropology, cultural studies, psychology, sociology), and the arts (literature, theater, film, and visual arts) and their application to medical education and practice.”

Narrative Medicine “fortifies clinical practice with the narrative competence to recognize, absorb, metabolize, interpret, and be moved by the stories of illness.”

Illness Narratives, as I define them, are “expressions about or around the experience of being ill.”

Loosely based on these definitions and largely based on my engagement with both fields, I’ve illustrated here my understanding of how these fields are related. There are overlaps, but there also exclusives. These evolving fields are not static but rather dynamic, shifting with the contributions of each individual.

What I’ve realized is that in the end, my study of illness narratives is not entrapped by these indefinite definitions. I can escape the boundaries of these words and instead find meaning in the margins. This isn’t an entirely satisfying conclusion, but I’m content with the realization that, for now, it is still in the works.

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Bioartography: Art Inherent in Science

Microscopic slides = masterpieces.

Bioartography is a joint venture by scientists and artists across the University of Michigan campus. This program identifies the artistic nature of scientific studies and illuminates them through a microscopic lens. A panel of artists and scientists contribute their perspectives, and the profits of these sales fund scientific research. Some of these creations have even been adapted and pieced together as quilts by the Healing Quilts in Medicine program. By far, an art fair favorite.

Inspired by Bioartography, I created this collage.

A collection of tissue slides in the shape of a heart, although ironically not from the heart.

I <3 Histology

<kidney, mammary glands, liver,  prostate>

A collection of tissue slides in the shape of a heart, although ironically not of the heart.

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Filed under Visualizing Illness

Jessica Beels Design: The Dimensions of Disease

Disease exists in three-dimensional space. Sculptures allow our depictions of pathology to inhabit the world as such. With metal and broken shards of glass, Jessica Beels brings disease to life. From the microscopic HPV virus to blood clots and galaxies of neurons, Beels crafts the symbolic works of art with an understanding of their scientific significance.

These works were designed specifically for an exhibit called Pulse: Art and Medicine, “a multi media investigation of medicine as an inspiration for art, and the inherent artistry involved in the medical sciences.”

What I love about Beels’ creations is that they embody all aspects of this mission. The multiplicity of medium, incorporating  ordinary tools of art alongside the extraordinary. Understanding how medicine, the springy resilience of blood cells or the withering effects of Alzheimer’s on neurons, are influence  these creations. And, at the same time, how this art reflects the natural and unnatural of the human body.

It is the thought and care behind these works that empowers them. Beels outlines the flow of her ideas, inviting the viewer to understand the decisions she made in shaping each creation. She clearly respected this feat of stepping into the world of science and drawing upon art to explore. Beels seems to devote herself to each of these works, allowing each component to bring its scientific merit into art.

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Colonomic: Cancer, Pregnancy, and Comics

“You’ve got 3 options.

1. Have chemo now and risk damaging the baby

2. Abort the baby and start chemo after… I must make you aware that chemo might make you infertile

OR

3. Delay treatment until after it’s born.”

(Matilda Tristram, February Colonomic)

How does Matilda Tristram face these choices? With a black felt pen.

Colonomic is “an ongoing comic about it all.” As an 18-month pregnant woman, she was diagnosed with Stage IV Colon Cancer in February. With a passion for sketching and writing, Tristram has turned to comics as a means of communicating with loved ones about how she was doing.

The black and white nature of her comics gives them a sense of precision, and her concise use of language leaves a reader valuing the impact of each word.  The simplicity of her sketches sharpens them, and she distills each image to its core. Her authenticity and honesty is exposed by her unaltered writing and drawing, which preserves her presence within this work of art. Unsettled emotions of frustration surface, but so to does gratitude for the simple pleasures. Some moments are comical, others more tragic. 

The name Colonomic melds together the bodily organ with a form of art in a way that piques your interest, and exemplifies that these distinct realms may in fact be connected. This comic establishes an  incredible connection between the work of literature and art.

One thing I thought was interesting was that after watching Matilda’s story: A matter of life and death, the caption didn’t quite seem to fit.  The caption claims that “she has created a comic book that details the difficult decisions that came next: whether to undergo chemotherapy and whether to keep the baby” (Guardian). But Colonomic pushes against these decisions, drawing upon so many more of Matilda’s unique experiences.

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Filed under Literary Narratives, Visualizing Illness

Regina Holliday’s The Walking Gallery: Connecting the Dots Between Policy and Patients

Sometimes the tendency to wear your heart on your sleeve, to openly express your emotions, can be suffocated by  the medical profession. But wearing your heart on your back is becoming increasingly appreciated.

The Walking Gallery is “the Gallery that walks. The Patients that wear our stories on our back” (Holliday).

Image courtesy of Ted Eytan under a Creative Commons license: BY-SA.

Image courtesy of Ted Eytan under a Creative Commons license: BY-SA.

It’s this revolutionary idea that art can provide a window into the patient experience, one that can be displayed by the clothes on a person’s back. This offers mobility to art, a method of transportation that escapes the confinements of wall hangings and pervades into inevitable lines of vision. This increased accessibility allows “patients,” as embodied by this artwork, to enter into places and discussions that they have never before been a part of. Now, patient experiences can be visible and  actively remembered in the decision spaces  that often influence but do not include patients.

Image courtesy of Ted Eytan under a Creative Commons license: BY-SA

Image courtesy of Ted Eytan under a Creative Commons license: BY-SA.

The work of Regina Holliday, the artist who brought this exhibit of sorts to life, is inspirational. She not only has a way with art, but also a way with language: her overwhelmingly powerful talk at Stanford incredibly moved me, and she has piqued my interest in exploring the place of art in medicine. Holliday is one of the first artists that I’ve come across in the field of patient advocacy, and her creations have gathered incredible force for this movement.

What I love about the Walking Gallery is that it takes a step forward to putting a story to the patient experience. These jackets and the images that they bear evoke emotions buried within medicine.  And The Walking Gallery is not limited to patients: physicians, policy makers, and others associated with health care all have stories to share. Despite the distinct roles in medicine, art overcomes these boundaries with brushstrokes and splashes of color. We can wear our experiences, the good and the bad and the in-between, the joys and sorrows, the triumphs and trials. Boldly.

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Filed under Visualizing Illness