by Jacqueline E. Lawton
In 2003, my mother, who had worked for many years as a nurse, was injured while working with a patient. Initially, she was told that the pain she felt was associated with arthritis. It wasn’t until she had an MRI that she understood the true extent of her injury. She had her first back surgery in 2008 and went back to work. She couldn’t afford not to work and continued to push through excruciating pain. It wasn’t until after her second surgery in 2010 that her body no longer allowed her to put in the long, strenuous hours of a nurse.
As I watched her healthcare team attend to the needs of her body, I longed for them to address her psychological health: how this injury would shift who she is in the world. On the other hand, outside of asking her how she was adjusting and encouraging her through physical therapy, I myself didn’t know what more I could do to help her or patients like her adjust to life after dramatic physical change for her or for other patients like her. Sometimes, however, the stars align and a change of circumstances place you exactly where you need to be in order to accomplish something unexpected and extraordinary.
In January of 2015, a couple of weeks after I started my new job as an assistant professor in the Department of Dramatic Art at the University of North Carolina at Chapel Hill, I attended a fascinating discussion about science and theatre. Hosted by the Science and Entertainment Exchange, a program of the National Academy of Science (NAS), JD Talasek, the director of cultural programs at NAS, gathered Washington, D.C.–area theatre artists, administrators, and scholars to gauge their interest in producing and writing plays about science.
After a roundtable of introductions, choreographer, performer, and educator Liz Lerman spoke about her recent project, The Matter of Origins. Key points from her talk that resonated with me were:
Both theatre and science exist in a space of inquiry. Artists and scientists seek knowledge and understanding about the world through their work.
Artists can help scientists communicate thoughts, discoveries, and challenges to a wider public community in compelling and creative ways.
Scientists can help artists see the power and impact of the research and discovery.
Also, scientific research structures can help artists understand the importance, even the necessity of failure in the development of a new work.
This meeting was invigorating and deeply informative. It inspired research for a new play that I was beginning to write called Among These Wild Things, which explores intersections between human rights and genetics. It also reignited an interest in narrative medicine that began as I watched my mother recover from her multiple surgeries. I felt called to focus on a play that would put narrative medicine at the center of its explorations.
When I returned to Chapel Hill, I shared this idea with Adam Versenyi (chair of the Department of Dramatic Art) and he introduced me to Bruce Cairns, the director of the North Carolina Jaycee Burn Center. Together, Dr. Cairns and I began to think of ways to collaborate. Our opportunity came in April 2015 when I applied for and was awarded a Kenan Creative Collaboratory grant to research, write, and develop ARDEO, a one-act play inspired by personal narratives of healthcare practitioners and patients at the Jaycee Burn Center.
With the support of Jules Odendahl-James, who served as our dramaturg and research consultant, and Nicole Damari, a UNC–Chapel Hill medical student who helped me craft research questions and took and transcribed copious notes, I got to work. In February, I spoke with former patients and healthcare practitioners. I spent the first two weeks of March researching the history of the Jaycee Burn Center, the educational backgrounds and career paths of various healthcare professionals involved in catastrophic medical care, and the varied recovery journeys of burn victims. From the end of March and all of April I wrote the play.
In May, we had a weeklong new-play development workshop and rehearsal. With Kathryn Hunter-Williams (senior lecturer in the Department of Dramatic Art) as director and David Navalinsky (director of undergraduate production) as lighting designer and sound operator, we put the play on its feet. I was able to develop the script even further with our talented cast, which included Nikyla Boxley, Tre Dukes, Mariah Guillmette, Devin Kessler, Mekhai Lee, and Hassiem Muhammad, all students from the University of North Carolina School of the Arts.
We had two public readings, which were followed by post-show discussions, and welcomed a combined audience of forty-five people. There was so much interest in the script that we staged a performance just for film; that way, the script and its staging can be available for theatres, medical schools, recovery-support groups, and the public at large.
What follows are sample scenes and monologues that exemplify this creative product born of the narrative medicine investment of putting the lived experience of patients at the center of a healthcare story. The names reflect the initial cast of actors.
ARDEO begins with a celebration of the founding of the Jaycee Burn Center, chronicling the personal connection of its founder to the type and depth of care the unit would provide.
From there, we meet a group of medical students who are learning about the nature of burns. As with any play inspired by scientific or historical research, the challenge is in breaking down large amounts of information into interesting dialogue. I have to find ways to activate this information so that the audience has a greater understanding of the world of the play, but doesn’t feel overwhelmed by it. I found that putting the characters in an educational setting allowed me to share key information in ways that was vibrant and engaging. Each scene with the students is crisp and full of energy; each tries to one-up one another with their knowledge as they make their rounds.
In the next section of the work, the burn victims speak about their lives and injuries. These monologues are more nuanced and allow for more emotional depth. I wanted to ensure that we spent time with them so as to understand their experiences of this trauma.
After learning more about the burn survivors, we hear from the healthcare professionals of the play’s real/mythic Burn Center. In another series of monologues, they speak while on a break from their day, ruminating on the events that led to their career path and inspired them to work at the center.
The play continues to weave the stories of patients and their caregivers through the arc of medical-student learning and healthcare professionals’ considerations of the how, what, and why of their jobs. In the end, the hope is for layers of understanding to grow, like new skin, upon the audience’s conception of traumatic burn injuries and their treatment, but more importantly upon their understanding of the psychological effects that illness and injury have on patients, their caregivers, and their medical-support team.
Throughout the entire process there were two significant moments that made me understand that this play had to be written. First, it was hearing the former patients speak with such candor, courage, and vulnerability about their experiences. They knew their personal histories would provide audiences with a first glimpse into a world that few imagine they will ever experience. Second, it was hearing Dr. Cairns speak about the nature of burns and the stigma that survivors face. He explained that while “burns are indiscriminate; no matter who you are, no matter how much money you have—burns are the great equalizer,” many burn victims struggle to reenter society owing to social standards of beauty. Dr. Cairns told me about a young girl out to dinner with her family at a restaurant. They were there for all of fifteen minutes before being asked to leave because the sight of the young girl had disturbed the other patrons. “I was astonished to hear such a callous attitude towards another’s experience. No one should have to experience this kind of rejection. The weight of these truths and experiences overwhelmed and humbled me, and it left me wanting to create as beautiful a story as powerful.
Interestingly, it wasn’t until after I completed the first draft of the play that I learned that in 1969, during the Vietnam War, my mother had worked as a medical specialist at Brooke Army Medical Center Burn Unit in San Antonio. She told me that what she remembers most about her time working there was speaking with the patients whose lives were so transformed by their injuries. She would take time to listen to their experiences, their pains, frustrations, and triumphs, and their hopes and fears for the future.
We hope that this play dramatizes the importance of taking time to talk and listen and its importance to both the physical and mental health of patients, but also to their healthcare providers. Narrative medicine not only serves the public-health sector by working to improve the effective delivery of healthcare, but it is also an essential tool for patients’ recovery and physician self-care. Theatre artists are rarely attached to hospital wards or physician’s offices, but this type of collaboration can improve doctor/patient communication and medical personnel’s connection with the wider public. Plays like ARDEO provide a critical space of imagination that helps patients, healthcare practitioners, and the larger public see and hear one another onstage in ways that can inspire such engagements in real life.
If you are a theatre artist interested in exploring narrative medicine but do not have access to a local college or university, then I encourage you to start with yourself and your healthcare team. Ask your doctors and nurses to tell you about their journey and what led them to the medical field. Learn about your family’s medical history and write about your own medical conditions. We all have a story to tell, and the more we speak about our health and the way that healthcare is practiced in our country, the more knowledgeable we will be and better able to care for ourselves and one another.