On their very first day as students at the University of Vermont College of Medicine, Kelley Collier and Brett Powers met “S,” a 17-year old with cystic fibrosis (CF). Collier knew little about the congenital, life-threatening disease, which causes persistent lung infections and progressively limits the ability to breathe. Collier and Powers learned how S’s daily routine was entirely dictated by CF—the frequent hospitalizations, the dependence on inhalers and numerous medications, the vibrating vest treatments to loosen mucous in her lungs, and how social activities like sleepover parties were instantly curtailed if another guest had a cold. They left the classroom feeling troubled by the way the disease restricted the teenager’s life.
“Cystic Fibrosis sounded so isolating,” Collier says.
As an undergraduate majoring in studio art at Wake Forest University, Collier volunteered with the North Carolina-based nonprofit Arts for Life, creating art with patients on the Hematology/Oncology unit at Brenner Children’s Hospital. She was moved by the insight into their disease process that the children displayed in their artwork. Powers was also an undergraduate art major and understood the cathartic nature of creating art. When they decided to team up as New Hampshire/Vermont Schweitzer Fellows, it was a given that they’d find a way to incorporate art into the medical/mental health context. Collier had also spent time studying in South Africa, where she stumbled upon an exhibit of “body maps” created by women with HIV/AIDS—life-sized silhouettes that contained quotes, illustrations, and pictures that visually displayed what it was like living with this chronic disease. She and Powers agreed that body maps could be a powerful tool for CF patients to explore and create conversation about what it means to be living with the disease.
“Many CF patients in the hospital are very young and have often had little opportunity to process, reflect, or incorporate ideas of ‘chronic illness’, ‘life expectancy’ or ‘hours of daily treatment’ into their personal identity,” says Powers. “Creating body maps with children, adolescents, and adults who have CF is a way to initiate that conversation.”
Collier and Powers work with patients at UVM’s Children’s Hospital Department of Pediatric Pulmonology, in Burlington, and with adults at the University of Vermont Medical Center. Participants in the voluntary program have produced powerful and revealing imagery about what it’s like to live with CF. A figure with fire in his throat illustrates the acid reflux one patient experiences. Lungs filled with water depict another’s inability to breathe deeply. A quiet 13-year old girl draws her stomach as one giant pill.
Expressing their experience of CF through art has helped some patients have important conversations with family members that previously went outspoken. One adult patient drew a body map that included a rope tied around his lungs as his wife, mother and father looked on. His mother remarked to Powers that she had no idea that his breathing felt that labored to him. Outside his room, a nurse told Collier and Powers how helpful it was to know how the patient experienced CF.
“I think that this experience really illustrates the goal of our project: to create spaces for these conversations to happen and to provide people with and without CF the opportunity to gain deeper insight into what it is like living with this chronic disease,” says Collier.
For that reason, the Fellows send a brief report of their work to each patient’s physician in the event follow-up is needed.
Collier and Powers also aim to lessen isolation and create a sense of community for CF patients, who are discouraged from spending time in the same room together lest they pass pathogens between them, by creating an exhibit of the maps later this spring.
“By hanging them together in a shared space, the body maps can offer a source of communication within the CF community,” says Powers.
“We hope that patients will see the similarities and differences between their body maps and those of other patients,” Collier says. “Patients and their family members seem excited about this prospect and expressed interest in seeing how other people illustrate their experiences of living with the disease.”
Collier finds that the willingness of patients to open and share with her their personal experiences is the most surprising—and gratifying—part of the Fellowship. “I feel incredibly lucky to be able to allowed into their lives,” she says. “It’s amazing to see a patient really engage with the project and reveal that they are angry or sad, and name that experience.”
She is also appreciative of the opportunity to meet like-minded classmates she might not have gotten to know as well otherwise. “These are peers who lead by example, are passionate, and willing to listen,” says Collier. “Being a Schweitzer Fellow reminds me to take a step back from my own life and think about the larger community and what my role is and what I want my role to be within the community.”
Powers expresses similar sentiments about her Schweitzer Fellowship. “The comradery I’ve experienced with other members of our chapter has been one of the most meaningful parts of the Fellowship,” she says. “I am fortified by the thought, gentleness, and vigor my classmates bring to the pursuit of their ideals as we attempt to give something back to our surrounding community.”