“I’m working with Brianna today. I wondered if you had time today to hang out with us.” Amy had been working with this particular 7 year old for a few months, a girl with a congenital
heart defect. This was a new kind of collaboration for both Amy and me. It was my second year working as a musician in residence at UF Health Shands Arts in Medicine where I spent 18 hours a week playing for various patient populations to bring them a sense of connection and creativity during their hospital stays. Amy was also a part of the Arts In Medicine team and had been working as a visual arts therapist for 3 years. She had a strong practice facilitating art experiences that served as a baseline for transformative therapy involving developmental, cognitive and emotional dysfunctions. Historically, our respective fields of practice were not known to overlap or collaborate. In fact, when I met Amy, it’s fair to say that the space between arts therapists and artists in residence was a volatile, conversational no-fly-zone. Qualification and scope of practice were the points of contention along with general confusion as to who was whom in the healthcare context. The tension caused both parties to stay in hard-lined separate lanes, going about our respective practices cautiously.
Since Amy and I both operated under the umbrella of UF Health Arts in Medicine, one of the longest running arts in healthcare programs in the country, she saw an opportunity to enrich her practice by looping me into a patient experience. The setup was beautiful. Amy had a rapport with the patient, a fundamental understanding of treatment regimen and a grasp of the child’s development, using each to prescribe artistic modes of expression that served to move Brianna healthily through an otherwise harrowing experience. Her thought to involve me was built on the notion that an artist in residence is poised to engage patients for the sake of the uplifting qualities of creative expression and that my work with Brianna under the watchful eye of a therapist may bring to light some new understanding about her mental and emotional state outside of a therapeutic session. Our lanes merged and we began working in tandem with Brianna’s parents to schedule weekly interactions that engaged Brianna in a space where Amy could guide these interactions with therapy goals in mind while Brianna and I could talk, sing and paint. The addition of live music visits engaged Brianna with a lighter approach to completing her intentional artistic tasks. Her mind ambled around the room as we sang. In between songs, thoughts about life and her condition began to emerge.
One day, she wondered aloud why she had to get sick, why God made hearts so complicated and why God is invisible. She was frustrated at the perplexing nature of these questions and the loving, yet unsatisfactory kinds of answers parents offer to a daughter in peril. They were the same kind of answers these parents soothe themselves with at night I imagine. I remembered something I learned when I was Brianna’s age and in the hospital myself after I was involved in a terrible truck accident. I recalled what it was like to come out of a coma. I saw and smelled construction paper cards from all of my 1st grade classmates with misspelled, crayon wax words and funny drawings. I remembered the taste of lemon Jello the nurses gave me whenever I wanted it. I remembered how happy my parents were that I was alive. I remembered how thankful I was to be alive because of all of these little things. I learned back then that thankfulness is one of the purest and most powerful ways to redirect the mind when it wanders into boggy territory. I asked Brianna what she was thankful for in her life. She paused for a moment and thought to herself while a Berlin Heart cycled blood in and out of her body, it’s slushing rhythm a constant reminder of time. “I’m thankful for my mom and dad” she said. I replied, “Im thankful for mine too. They love me a lot. Anything else?” I waited. Brianna cracked a smile that exposed a mixture of baby teeth and new ones, “My dog, Smokey” she continued, “He’s really sweet and funny. I like to sneak him food from the dinner table when I don’t want to eat it.” We all laughed. She went on to list laughter with her brother, the bright blue scales of Billy (her fish), God, and most of all, Love. By the time her list was though, the room was notably lighter and I asked her if I might put this whole list to music one day. She nodded and seemed excited at the possibility of having her own song. The result was a song called “Thankful For Love”, the first in an 8 song children’s album that came to fruition after several more collaborations with Amy and funded by Brianna’s family.
Since these shared experiences, the hard lines between art therapies and art based hospital programs have softened, allowing for conversations at conferences and continued education about the scope of each practice. The clarifications of roles serve more as a defining tool rather than a distancing one now. I believe that there has been a sort of awakening to the idea that these two perspectives can serve very different and compatible purposes. The goal that Amy and I shared was patient care, holding healthy space for a life in the limbo of illness. The techniques we employed and the tapestry of communication that we wove touched a family and dressed Brianna’s hospital room with the music of color and the revelatory insights of expression.
Our visits became fewer over the course of the next year as complications arose and Brianna passed away before receiving a new heart. My work with her remains one of the most pivotal moments in my practice. I learned invaluable lessons about the boundary lines between artist and patient and the intersecting lines that allowed for powerful collaboration with Amy. By merging our practices, we were not only able to cast a wide net of care and support for Brianna, but we were also able to provide support for the family and one another after the loss. These have been very important emotional landmarks in my work as an artist in the hospital. Therapists carry with them important causal knowledge regarding the well-being of those in critical circumstances while Artists in residence travel light with an ability to inspire and to humanize the hospital experience. Together, these practices have the potential to amplify the holistic approach to arts in healthcare.