Patient Engagement

It’s Not So Much About The Cancer, But The Story

Recently, I sat with a colleague as we discussed our individual and collective experiences of ‘being’ cancer patients; interestingly it is not so much about the ‘cancer’ as it is about the story. Why is story so important? Why do we as patients, families, and practitioners need to create our own stories? Why do we as human beings (with the potential to be patients), when we experience illness in relation to well-being, need to understand the meaning of story telling? How does our understanding of the meaning enhance our practice, and teach us new ways of relating to the interconnectedness of living— others, environment, context? “Oral stories are among humankind’s oldest way of teaching helping traditional societies make sense of things, giving meaning to their experience, and explaining the known and unknown” (Peacock , 2013, p. 103).

We talked about how disconcerting it is to be on the other side of the bed, as patient rather than practitioner. As we talked we shared similar yet unique experiences of being patients, of our bodies’ expression of cancer – of knowing and unknowing, living in the in-between. We each had our own stories of knowing our bodies, and intuitively understanding the disharmony within.

My story began in between the knowing and unknowing—that sort of knowing that whispers in your inner ear, ‘something is not right…something has gone wrong’ and at the same time, it is the knowing you experience as the ultrasound technician’s forehead wrinkles in concentration. Facial and body expressions change; the face changes as the mind recognizes the ‘disharmony;’ the body hunches towards the key-board, her hands and eyes moving in quick sequence rapidly capturing the tumor emerging as an image on the screen; no longer a whisper in my inner ear, but an artifact being measured. Now my eyes, my ‘practitioner eyes’ track her expression, following the movements of her hands as she clicks and measures and maps…and I see the tumor too….

My colleague, recalls what happened during her CT Scan. The staff were at first caught up in the process of carrying out a routine procedure—starting the IV, giving the contrast, setting up the machine, things they have done many, many times— you can see and feel the competence in their movements. Following the procedure something changes – ‘as night to day’ – a shift in their manner, their voices soften, they slow down, their touch is gentler as they help her off the table, eyes averted, empathetic posture – leaning in towards her – she knew they had seen something, and that something was life altering for the other, for her! 

The Russian philosopher Mikhail Bakhtin (1929/1984) suggested that inner narrations might provide an explicit argument that “the ‘mind’ is not a contained center but a product of dialogical relations” (Bakhtin, 1986). Gadamer (2004) believed that human beings are always interpreting the living world, attempting to make meaning of the ‘unknown’. Caputo (1987) suggests that it is precisely in moments of uncertainty that we learn, grow, and transform. Yet, when we are confronted with uncertainty it is human instinct to want to run. We use the word illness everyday, but it is not easily defined. Perhaps it has something to do with the nature of illness – of uncertainty (Hartrick Doane & Varcoe, 2015). It would seem that illness disrupts our sense of well-being and creates, for a time, a disorientation and disharmony that needs to be sorted and, in our very human way, story helps us find our footing, find our way, and gain a sense of equilibrium. William James (1892/1963) thought that human consciousness is rooted in inner narration of experience, “we are all storytellers and we are the stories we tell” (McAdams, Josselson, & Lieblich, p.3). Arthur Frank’s (1995) explanation of human beings experiencing illness and their need to tell their stories

is informed by a sense of responsibility to the commonsense world and represents one way of living for the other. People tell stories not just to work out their own changing identities, but also to guide others who will follow them. They seek not to provide a map that can guide others—each must create his own—but rather to witness the experience of reconstructing one’s own map. Witnessing is one duty to the commonsensical and others…. (p. 17)

Frank reminds us that one’s story reflects the core morality of our post-modern experiences and that “storytelling is for an other just as much as it is for oneself” (p. 17). In Anishinaabe tradition, stories are offerings—gifts, and thus a story told and received requires responsibility for both the teller and the listener (Doerfler, 2013). Frank turns to Mikhail Bakhtin to explain why some stories stay with us, change us, sometimes haunt us as practitioners, he refers to Bakhtin: “the very being of man is deepest communion. To be means to communicate…to be means to be for another, and through the other, for oneself…(Frank, 1995, p. 13).

– Michelle Spadoni, September 2014

References:

Bakhtin, M. M. (1986). Speech genres and other late essays. Austin, Texas: University of Texas Press.

Caputo, J. (1987). Radical hermeneutics: Repetition, deconstruction and the hermeneutic project. Indianapolis, ID: Indiana University Press.

Doerfler, J., Sinclair, N. J., & Stark, H. K. (2013). Bagijige making an offering. In J. Doerfler, N. J. Sinclair, & H. K. Stark (Eds.). Centering Anishinaabeg Studies: Understanding the world through stories (pp. xv- xxvii). Michigan State University Press, East Lansing, Michigan.

Frank, A. W. (1995). The wounded storyteller: Body, illness, and ethics. Chicago, III: The University of Chicago Press.

Gadamer, H. G. (2004). Gadamer truth and method. New York, NY: Continuum.

Hartrick Doane, G., & Varcoe, C. (2014). How to nurse: Relational inquiry with individuals and families in changing health and health care contexts. Philadelphia, PA: Lippincott, Williams & Wilkins.

Peacock, T. (2013). Teaching a story. . In J. Doerfler, N. J. Sinclair, & H. K. Stark (Eds.). Centering Anishinaabeg Studies: Understanding the world through stories (pp. 103-118). Michigan State University Press, East Lansing, Michigan.

McAdams, D. P., Josselson, R., & Lieblich, A. (2006). Identity and story: Creating self in narrative. Washington, DC: American Psychological Association.

Leave a Reply

Your email address will not be published. Required fields are marked *

Want to learn more about AMS and the people and projects we fund?
Follow us on twitter.

Interested in learning more about AMS funded opportunities? Sign up
for our newsletter to gain access to our funding calendar (this newsletter
link scrolls to the footer.)