Based in Pittsburgh, PA, Cancer Experience Expressions is an online space for the sharing of cancer stories. 

Power of telling

What is this allure of cancer that made Lance Armstrong such a prominent figure in the world?  Answering this question helps inform us why illness narratives inspire and edify the hearts of so many the way they do in 2018.

Cancer stories particularly give us a glimpse to how societal patterns impact the way people suffer through the lens of 21st century America.  In Illness as a Metaphor, Susan Sontag formulates implicit views of modernity on illness with a particular focus on the stream of romanticized diseases—from tuberculosis, to cancer, to insanity.  At one point, she articulates the ancient world’s conception of disease as “an instrument of divine wrath” whereas the modern fantasies place more focus on the self.

Today, particularly strange reverence is afforded to the cancer survivor.  The landscape infused symbolically suggests a privileged depth; foreboding of death suggests being in tune with authenticity—a profound interrogating of being. “If you want to endure life, prepare yourself for death.” (Freud, “Thoughts on War and Death”)

Contributive to the difficulty in this articulation is a dearth of language. The technical terms of clinic dominating cancer discourse are unfit for the existential depths of the cancer experience. This calls for imaginative ways of talking about illness. (i.e. Tracy Austin's nametags)

There are illness stories that lie outside the range of our current artillery of ways to talk about them, so we must innovate new idioms—ways of communicating. By enriching the depth of this expression and subsequent communities, we are making progress toward further humanization of a technologically dominated medical paradigm.

Testimony implicates witness of the human suffering shared. The testimony transfigures that pain into expression, evidencing hope that you can be sick without losing love of humanity. (Frank, Wounded Storyteller, 40) During the first of my two encounters with Osteosarcoma, come February—about halfway into my chemo regimen—my condition was one of intense attrition. I was barely eating, terribly depressed, and with little hope—very sick in a holistic sense. Then I was introduced to a girl named Emily who was currently studying at Penn State, who had her collegiate years interrupted in a similar way that mine currently was, the year prior. We would text late at night while I was in the hospital for chemo.  It was as if having gone through this rite, she knew she could be herself toward me. She was quirky and authentically vulnerable. Just to see that Emily had made it back gave me hope that at the time was absent in my life: “What if?” That got me thinking, “Maybe this really is temporary, despite how impotent my future may seem now, it isn’t all that unreasonable that next fall I could be back with all my friends at Thiel.” I would be interested in accessing my medical records to compare the before-and-after-meeting-Emily data. Just that glimmer of possibility sparked my will to push back against the sickness of body as well as that of the spirit.  I began gradually regaining weight and strength, and clearing my chemo levels at a faster rate, thus allowing me to return home to recover and prepare for the next round. Emily’s story made me open more to the possibility of a potent future. This initiated a beginning of inspiration and positivity. As gravity and inertia teach us about momentum—the beginnings determine the outcome accordingly. It’s like a snowball.  In Teratologies, Jackie Stacey articulates the particular force of cancer narratives saying that the

'person who has had cancer is presented as a sagacious messenger whose purpose is to remind everyone of the preciousness and the precariousness of life.  The so-called “survivors” of cancer are seen to possess knowledge of the secrets of life, as well as the secrets of death. They are heroised for their confrontation with death, which is presumed to have enlightened them about how to live life. They are the bearers of knowledge. They have lived to tell the tale.' (244-5)

What do these witnesses know? What is the virtue in having gone on oncological journey?

The power of stories is their force on the deep dark corners of cancer; “stories humanize darkness.” It marks a Parrhesia:  truth telling when the teller ought to be afraid. (Frank, “Tricksters and Truth Tellers," 188-92.)

Particular reverence is afforded to the cancer survivor.  Someone once asked me at a writing class; “Do you feel a certain affinity with other survivors?” At the time, I didn’t exactly have an eloquent affirmation in response. It’s as if we survivors are a member of a club we never wanted in but will never leave.

"And all these people in pain…, all these people with aches and all these people suffering. We walk in different dimensions.  We have access to different experiences, different knowledges. And there are so many of us, too. What would happen if we all knew what it really meant and we all lived as if it really mattered, which it does.  We could help the normal and the whitecoats both. We could help them see that they’re wasting the precious moments of their lives, if they would look at us who don’t have it. I’m convinced only sick people know what health is. And they know it by its very loss." (Qtd. In Frank, The Wounded Story Teller, 141.)

We acknowledge a commonly held secret not fully expressible through language but witness from time to time in our core.  


 

Photo by  Tanja Heffner  on  Unsplash

Photo by Tanja Heffner on Unsplash

Tides of change

My story in brief