July 15, 2013 · 1:53 pm

A Week of Art

Mid-July in Ann Arbor means heat, humidity and sun, with a splash of sporadic thunderstorms. But it also means Art Fair, 4 days of celebrating and supporting the work of artists from around the nation.

In honor of the Ann Arbor Art Fair, I will be posting daily this week about art as an illness narrative. I love to think about how the practice of medicine is both a science and an art, and I stumbled upon this interesting article called Medicine: Science or Art? which teases out this idea.

“Medicine is both an art and a science. Both are interdependent and inseparable, just like two sides of a coin. The importance of the art of medicine is because we have to deal with a human being, his or her body, mind and soul. To be a good medical practitioner, one has to become a good artist with sufficient scientific knowledge. Technology covered with the layer of art alone can bring relief to the sick” (S.C. Panda 2006).

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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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July 3, 2013 · 9:52 pm

A Google Doodle of Franz Kafka’s The Metamorphosis

In honor of Franz Kafka’s 130th birthday today, Google chose to illustrate one of Kafka’s most canonical works: The Metamorphosis. This classic novella was one of the first illness narratives that I read, telling the symbolic tale of the salesman Gregor whose illness transforms him into a “monstrous verminous bug” (1).

It’s interesting what a different feel this image has. The drab colors reflect the simplistic tone in the book. But the sense of entrapment and isolation conveyed in Kafka’s work is inverted here by a mobile insect in control of his limbs. And the apple, a weapon that injures Gregor, becomes raised on the pedestal-like letter L. There is no sense of the pain and torment that Gregor experiences from the illness in the novella.

This doodle has me thinking about images and their effects on literature. Since I saw this image after reading the book, it was a bit unsettling for me. But if I had seen this image prior, perhaps I would have left the text with a different sentiment. I wonder how book covers of illness narratives may sway perceptions of illness.

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July 1, 2013 · 8:00 am

Empathy: The Human Connection to Patient Care

empathy, n. “the power of projecting one’s personality into (and so fully comprehending) the object of contemplation” (OED).

It’s the parenthetical part of this definition that makes me pause. Is full comprehension achieved through empathy?

This video has been circulating the globe, resonating with a variety of different audiences. I struggle to write about how powerful it has been for me. It’s  fascinating to me how the meaning behind words escapes definition. And perhaps that is mirrored in how videography can bring to life the comparative flatness of literature.

This clip compels viewers to rethink how we share environments with other people, particularly in the unique and vulnerable hospital sphere. Here, illness is the invisible string that brings everyone together in time and space. Medicine, at its core, revolves around the narratives of the ill.

The study of these narratives has been closely intertwined with building a sense of empathy. Today, I am excited and nervous to embark on my own research journey towards achieving the unachievable.

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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 20, 2013 · 3:54 pm

A Series of Fortunate Events

Today, June 20th, has officially become significant to me. Here’s why:

1. IRB-MED approval

My thesis research, Chronicling Childhood Cancer, has officially received approval from the IRB-MED at the University of Michigan. I filed the application two months ago, and I’ve had my fingers crossed ever since. Now, I can’t wait to get started.

2. WordPress friends

Ever since my spontaneous article about ICU patient diaries was featured by WordPress on Freshly Pressed, I’ve been honored by how many people have visited my blog. And more than that, perused my blog. Engaged in this discourse. I’ve been excited to make a series of what I call “WordPress friends,” and I’ve been touched by how many people have chosen to follow my blog. Today, I have reached 200 followers. And for that, I thank you.

3.  Blog pride

The previous two highlights to my day have served as a catalyst in my decision to include this website in my email signature. Ok, I know that this may not be a big deal, but it means something to me. I’ve been toying over this idea for the past few weeks; I’ve come to realize just how integral this blog is to what I value, and I’m excited to claim it as part of my identity.

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This is what I appreciate and celebrate. The big things and the little things.

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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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June 5, 2013 · 1:10 pm

Grand Rounds Conference: Introducing Illness Narrative Research to a Care Team

It was exciting to be in a room full of people who care about the same kids that I do. I was sandwiched between a talk about clinical procedures/research protocols and patient care deliberations; I was a bit frazzled at first, but it was an honor to have the opportunity to present my English thesis research project to the Pediatric Oncology Care Team at Mott Children’s Hospital.

I loved looking out into the conference room and recognizing people who I’ve been learning from and working closely with over the past few weeks. Realizing that they were all here and interested in what I had to say.

As always, I felt as though I could have spoken better, but overall my research project presentation was a huge success. Everyone contributed valuable insight about the project, and I’ve captured some of the ideas that arose here:

When is it too early to approach patients after a new diagnosis?

There were mixed ideas about this. Some people thought that immediate diagnosis would leave patients and families more sensitive and vulnerable, so maybe we should wait to reach out to them. Others recognized that this is a valuable time within the illness experience. I’m not sure that we reached a consensus about this, but it will be something to keep in mind through recruitment.

What kind of editing will be done with the child’s narratives?

My goal is to keep these narratives as authentic as possible. I ideally do not want any editing of these narratives to occur prior to publishing; I want these narratives to be published with misspellings and all.

Will you be noting that your perspective as the sole researcher is subjective?

This was an interesting idea that I hadn’t thought about it, but it’s incredibly true. My presence during this narration and my in-person encounter with these children, these authors, will certainly bias my own perspectives and insight into these narratives. This is especially true considering that I am the only researcher who will be working with these children. I need to think about the implications of this idea more, but I’m glad it was brought up.

After the talk and discussion, it was incredible to sense the energy everyone had. The environment was charged with enthusiasm; everyone was impressed with how far this project has come and the potential it holds. I’m so glad that I will be able to work closely with these caring staff, and I hope that this research will transform the experience of these patients.

I was touched that a few people came up to me afterwards to suggest the following:

A book by a Medical Anthropologist about this taboo sphere. I hadn’t heard about it before, and I look forward to reading it!

A compelling video created by a pediatric oncology patient at Mott. Mary has documented her experience with cancer through photography, and she has composed a powerful song to accompany it.

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I still have a lot to think about over the next few weeks (while I’m in Kenya!), but I can’t wait for my research to begin.

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June 4, 2013 · 10:15 am

Talking the Talk

In preparation for my talk to the Pediatric Oncology care team at Mott (tomorrow!), I’ve been  trying to figure out what it means to actually give a talk. I’ve taught classes, led discussions, and given presentations before, but there’s something different about giving a ‘talk’. And while I gave a mock one a few weeks ago, I wanted to make sure I was entirely up to speed before presenting my English research to a room full of physicians and nurses.

Two resources in particular have been of great help to me, in addition to all the people with the patience to hear me rehearse.

1. How to Give an Academic Talk, v4.0, Paul Edwards

Edwards outlines the good and the bad in the art of academic talk. He considers things to think about in preparation for the before, during, and after.  He contrasts the better and the worse and discusses some of the decisions required in giving a talk. The conversational tone of this guide helps to transform tips into tangible examples.

My favorite thought: plan a final sentence. So, so important to end powerfully and let your words resonate.

2. How to Give a Killer Presentation, Chris Anderson

Anderson from TED proves that everyone has the potential to give a powerful TED talk. He illustrates the story of Richard Terere, a shy boy from Kenya who was able to tell his story smoothly and effectively with training. Anderson draws attention to the importance of simplicity, preparation, presence, tools, and overall cohesion. Interwoven through his guide are TED talks that reinforce his points.

My favorite thought: “A successful talk is a little miracle- people see the world differently afterward” (122)

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I hope that my talk will leave Pediatric Oncologist physicians and nurses with an increased awareness of narrative in the medical sphere and an appreciation for what narrative can illuminate.

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