Visual art project conveys emotional stories of head and neck cancer survivors

Collaborative project, exhibition and book blend art and medicine to convey life-changing impact of cancer on patients.


Jude Griebel's “Obstructed” is a vivid example of a U of A collaborative project using visual art to convey the experience of living with head and neck cancer. (Photo: The Lancet)

A collaborative project at the University of Alberta-the first of its kind in Canada-aims to convey through visual art the emotional turmoil survivors of head and neck cancer endure.

Entitled "see me, hear me, heal me," the project provides a richer representation of a cancer patient's recovery than any conventional research study could, according to U of A dentistry professor Minn Yoon, who launched the project after hearing the stories of patients.

Head and neck cancer can be a terrifying and life-altering experience, denying those affected the ability to eat, talk and swallow, and often leaving them disfigured. They often describe debilitating grief, a refusal to look at themselves in a mirror and reluctance to venture outside the home to live a normal life.

As part of the collaborative project, patients shared their darkest hours with artists and medical clinicians in interdisciplinary support group interviews, forum theatre workshops and artist studio visits.

"There's not enough research being done into how this very invasive cancer impacts patients," said Yoon. "I wanted to find a way to share patient experiences in a way that was visceral, and visual art was the natural fit."

"see me, hear me, heal me" participants talk about their experiences with the project.

One tongue cancer survivor who found support in the project was Kimberly Flowers, who was first diagnosed in 2014.

"I had to learn to speak, swallow and eat all over again," said Flowers, who suffered through reconstructive surgery for her tongue, a bilateral neck dissection and 30 radiation treatments.

"The anatomy of my neck had completely changed. I went from being tube fed through my nose to purees to semi-solid food. Even today, I still can't eat certain things."

The impact of "see me, hear me, heal me" is outlined in a new book from U of A Press called Art & Medicine: Transforming the Experience of Head and Neck Cancer.

Generously illustrated, it includes art reproductions and written contributions from a number of team members including art curator and professor of art and design Lianne McTavish and Pamela Brett-Maclean, director of the Arts and Humanities in Health and Medicine (AHHM) in the Faculty of Medicine & Dentistry and professor of psychiatry, who edited the book.

"What I think is really unique and critical in our publication is that we have recognized that human experience cannot fully be captured by traditional, empirical approaches. Rather, we have honoured and included the perspective of patients with a view to uncovering new meanings, and raising new questions through narrative and arts-based inquiry," said Yoon, adding that patient stories form the heart of the project.

Yoon's team began interviewing patients and engaging artists in 2015, and since then has exhibited the work of artists such as Ingrid Bachmann, Sean Caulfield, Jude Griebel, Jill Ho-You, Heather Huston and Bradley Necyk. Team members have also made numerous presentations and published scholarly work.

A common thread in many of her patient interviews, said Yoon, was an overwhelming sense of shattered identity.

"People were saying things like, 'They think I'm stupid when I go into a grocery store and they can't understand me because I can't talk properly,' or, 'Look at this distorted jaw line I'm living with. People think I'm some sort of freak.'

"I really wanted to enhance public awareness of the everyday lived experience and personal impact of head and neck cancer."

That public outreach has been significant. An exhibition last year called FLUX: Responding to Head and Neck Cancer at the International Museum of Surgical Science in Chicago attracted attendance of more than 8,000, said Yoon.

Bradley Necyk, an artist and recent U of A psychiatry doctoral degree recipient, spent time observing and hearing the stories of head and neck cancer patients in Edmonton, transforming his impressions into graphic and disturbing images meant to convey an incomprehensible darkness.

Listening to the stories, he said, you go down to a place that's dark and unfamiliar, but then pull from out of it.

"It's a terrifying but really creative time-important and really meaningful. We need more of these stories."

His striking video installation shows a patient shot against a green screen, allowing Necyk to separate parts of the head in post-production and have them move independently.

"It's a very dismantled, disintegrated portrait, and it really resonated with patients," said Necyk. "Each one of them found it to represent part of their illness journey and what they were feeling."

Another powerful image in the exhibition is Jude Griebel's "Obstructed," a figure representing both human and mountain resting on a hospital bed. A rockslide in its neck has caused a traffic jam on the highway that crosses his body, symbolizing the sudden, traumatizing nature head and neck cancer can have.

Yoon said one reason for publishing Art & Medicine is to provide a roadmap for others interested in taking a similar humanistic approach to exploring a difficult medical or social issues.

"The hope, really, is that this becomes a living documentation of the possibilities of projects like this, where we show how research that crosses disciplinary boundaries and partners with community can result in authentic and powerful outcomes."