Symbols speak eloquently of living-with-dying

For many, living with a life-threatening illness is unimaginable. How does one garner the optimism and endurance needed to continue living while the end of life approaches? To help shed light on the experiences of people living with the uncertainties of serious illness, 32 people diagnosed with cancer, chronic kidney disease or HIV/AIDS joined forces with a group of nurse researchers to share stories and ideas about living with dying.

The Re-stor(y)ing Life Within Life-Threatening Illness research team, led by Dr. Laurene Sheilds, has undertaken an investigation of the experiences of people living with life-threatening illness. Working collaboratively, the team, consisting of Sheilds., Drs. Anita Molzahn (currently at the University of Alberta), Anne Bruce and Kelli Stajduhar with then-doctoral students Kara Schick Makaroff, Rosanne Beuthin and Sheryl Shermak, amassed data about the lives of people living with incurable disease.

By requesting that project participants identify a symbol emblematic of their experiences living with life-threatening illness, the team integrated the study of representational symbols into the project. As four years passed and the project, funded by the Canadian Institutes of Health Research, drew to a close, the Re-stor(y)ing team embarked on a number of initiatives to make its findings available to the project’s participants, health practitioners and the community at large.

As part of this knowledge dissemination initiative, I was invited to collaborate with Re-stor(y)ing team members Bruce and Schick Makaroff to curate an exhibit that would transform the research into a visually cohesive and publicly accessible form. As a result, on April 13, the Symbols of living in-between: Re-stor(y)ing life within life-threatening illness exhibit will open at the Maltwood Prints and Drawings Gallery. The exhibit will provide an opportunity for the public to put themselves in the place of a person living with life-threatening illness. Through the sharing of a selection of symbols and stories identified by project participants and interpreted by the researchers that worked with them, the exhibit bears witness to complex narratives about living with dying that are seldom heard.

The results of the Re-stor(y)ing team’s research will hit close to home for anyone who knows, or has known, a person living with life-threatening disease. My own experiences compelled me to be part of the project. My mother, Eileen, lived an eight-and-a-half-year journey from her diagnosis with stage-four colorectal cancer to her passing at Victoria Hospice.

My mother, her family, her friends—we all experienced aspects of living with dying. “You’ll be lucky to have six months,” she was warned. She relished life between battles with chemo, radiation and surgery against perceived odds and was repeatedly told “we don’t know how you are still alive,” and “whatever you are doing, keep it up.”

Sheilds recognizes the value that personal connections with the research bring—each team member has been “touched professionally and personally by life threatening illness… we chose to study these experiences from a research perspective so that we might capture the broad range of experiences that people have.” Sheilds and members of the Re-stor(y)ing team strive to keep “the experiences of our participants in the foreground” and, as such, the exhibit is dedicated to people living with, and those who have succumbed to, life-threatening illness.

The diverse array of stories that viewers will witness in the exhibit are testament to the reality that though remarkable, the lives of those living with dying are not uncommon. The exhibit’s intimate and often uplifting look at living with serious illness demonstrates that people are not defined by the ailments with which they are diagnosed. Serving as a powerful reminder of the gravity of living with life-threatening illness, white ribbons will be placed throughout the exhibit adjacent to symbols chosen by research participants who have now passed.

The Symbols of living in-between exhibit runs from April 13 to June 4, 2012, at the University of Victoria Maltwood Prints and Drawings Gallery in the McPherson Library (lower level, room 027). The gallery follows regular library hours (available online at: http://library.uvic.ca). The exhibit is free and open to the public.

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Poem on image reproduced above

Still Here

I picked it up in a Mexico market,
white, bleached cotton.

Later, after my surgery
I didn't know I'd swell up like that.
This was something I could wear;
I could go out wearing it too.

I can't remember when I last wore it,
but I keep it,
now tattered,
but still here.

The more I think about it,
it's really a good symbol.
I visualize me in this dress in the fall,
out in the tomato patch.

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Robbyn Lanning, BFA, MA, is coordinator of research and scholarship in the School of Nursing and Curator of the Symbols of living in-between exhibit.