Category Archives: Literary Narratives

Notes Left Behind: Journaling about a daughter’s cancer

“She is simple. She is our Elena” (x). A grown-up, 5-year-old girl who loved hearts, dresses, and the color pink. Her life was colored by her experiences with DIPG, a rare form of brain cancer.

notesNotes Left Behind is a collection of journal entries written by Elena’s parents, Brooke and Keith Desserich. What began as a preservation of memories to share with Elena’s sister Gracie quickly became more meaningful to both the Desseriches and  all those who cared about Elena. 

The Desseriches chronicle their letters by the date and the number of days since diagnosis, the day Elena was given an estimate of 135 days to live. Brooke and Keith take turns writing entries that coalesce to provide a more holistic, parental view of caring for a child with cancer and her sibling.

While Elena wrote many notes to her loved ones, “this book too is a note from Elena, messages from a little girl who taught our family so much about life” (xiv). Elena’s sweet, sincere personality shines through the eyes of her parents, who share with us her experiences in losing her voice,  gaining weight from steroids, and wanting nothing more than to be normal once more.

In the face of cancer, questions emerge about the daunting uncertainties and the forgotten nuances. Keith grapples with these question marks and calls out our band-aids, noting that “cures don’t come on toy shelves and they don’t have tags” (64). He reminds us that these material objects are powerful yet insufficient when lives are still at stake. It’s refreshing to remember that at the root of each childhood cancer is a need for a cure.

Inspired by their personal experiences with the incurable, the Desseriches started the organization The Cure Starts Now. With an emphasis on finding a cure for brain cancer, this organization believes that a cure for all cancers can be found in this elusive disease. Elena has touched the lives of those around her and more.

She has left behind more than notes.

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

Angels & Monsters: A child’s eye view of cancer

Godzilla stands next to a purple hospital, breathing out engulfing flames of fire. He is burning out cancer.

This drawing was one of many to inspire art therapist Lisa Murray to share the work of children with cancer. Photographer Billy Howard is also dedicated to these children, capturing their personalities through a camera lens. Together, Murray and Howard set out to bridge their representations of these children. Murray let children illustrate what it feels like to have cancer through the medium of their choice, then wrote out their explanations. Howard photographed each child individually, honoring their personal journeys with cancer.

Angels & MonstersGodzilla vs. Cancer was an art gallery exhibition in 1994, sharing the illustrations, explanations, and photographs of 25 children with a larger audience outside the Pediatric Oncology ward. Eight years later in 2002, 17 of the children had survived. These creations along with biographies and a list of resources were compiled to create the book Angels & Monsters: A child’s eye view of cancer.

Cancer brings out fear: tears, pain, sickness, confusion, isolation, and band-aids. But it also brings out friendships, faith, perspective, and love. While each artistic piece offers insight into each child’s perspective, black and white photographs showcase each child’s self. On a swing, with a superhero cape, by a window, curled in a bed. Each work of art and the rationale behind it is compelling, each photograph and each child beautiful.

The authors reflect honestly with simple yet profound understandings of these children and their journeys. I loved the phrase that Jeff Foxworthy uses in the forward to describe these children: “old souls in little bodies” (viii). These individuals exhibit the precision of language as they carve out childhood cancer. They invite us to into “a special world. No artifice exists there. The human spirit holds sway with complete honesty and great dignity” (6).

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Filed under Chronicling Childhood Cancer: Illuminating the Illness Experience through Narrative, Literary Narratives, Visualizing Illness

Where We Stand with Childhood and Young Adult Cancer

Let’s start with some of the basic facts about childhood cancer and young adult cancer, excerpted below.

  • “Cancer is the #1 disease killer of children”
  • “Cancer is the second leading cause of death exceeded only by accidents”
  • “80% of children diagnosed with cancer are in developing countries.”
  • “50 years ago, less than 10% of children survived cancer.” Now, more than 80% do.
  • “The late effects of treatment – which are often life-threatening – mean that ‘childhood cancer is forever.'”

These facts are illustrated by this infographic by The Children’s Hospital of Philadelphia. I think that these five points highlight the key issues surrounding the childhood cancer phenomenon. It remains a serious concern for the lives of children around the world. We’ve come a long way in understanding pediatric cancer, but there remains much for us to learn about causes, treatments, cures, and longterm effects. Childhood Cancer Awareness Month aims to illuminate these insufficiencies so that we can recognize them and do something.

Gold ribbon

Niki K; BY-SA.

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

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

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


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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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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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.


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

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

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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Beating Breast Cancer: Angelina Jolie’s Mastectomy

Angelina Jolie’s story of a mastectomy has been permeating through media. With a high genetic risk for breast cancer (>85%), Jolie made the conscious decision that she would not let herself fall victim to cancer. She chose to have a double mastectomy, ridding her body of potentially cancerous cells and replacing them with breast implantations.

Her Op-Ed piece in the New York Times is an interesting and well-written piece, and her decision to undertake a preventive mastectomy all the more admirable. But there was one thing that I wish she had explored more: why the need for the breast implantations following the mastectomy?

I ask this because in reading her piece, I was reminded of Audre Lorde’s The Cancer Journals (as I always am when I hear about breast cancer now). Lorde vehemently critiques the prosthetic breast, suggesting that it is a materialization of societal expectations for women rather than a functional physiological necessity.

Although I realize that Lorde’s strong sense of identity set apart her somewhat controversial critique of the prosthetic breast, it has made me question them more. I imagine that Jolie’s identity as an actress demands for her prosthetic breasts, but I wish she had spoken more about this second, equally important decision in her story. This decision becomes buried beneath the mastectomy, almost as though it was not a decision at all but rather an expected follow-up course of action.

In reading her story, I also think it’s interesting to consider the effects of illness on celebrities. As I opened the article, I was taken aback to realize that I actually recognized the name of the author. I wonder how an illness narrative is altered by a person’s identity as a celebrity and how this impacts its resonance with readers.

It seems like it was Jolie’s awareness of this difference that encouraged her to write this piece, to share her battle, to tell her story.

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