Written by Sadie Wilcox, MFA on October 31, 2019
All aspects of this story are true and based on lived experience. Some names and identifying features have been changed.
In my plastic art bin, I carry paper, pencils, watercolor paint, and brushes. I’ve chosen brushes with a variety of widths and grips for kids on medication that makes their hands tremble. I’ve added a handheld video camera for any older children or teens who want to document their time in the hospital. Everything is sterilized, including the bin itself.
As I enter the Pediatric Bone Marrow Transplant Unit, I open one door at a time. The double doors are in place to maintain the HEPA filtered air system and protect immunocompromised patients. Following hospital protocol, I scrub my hands in the sink before I enter the unit.
The 12-bed unit is busy. Doctors and residents congregate as they conduct medical rounds. Nursing staff gather to update chart notes. Physical therapists weave through the hallway carrying bouncy balls and foam rollers. A nutritionist peeks into a dark hospital room, sterilizes her hands with medical-grade sanitizer, and dons a long yellow gown, plastic gloves, and a cloth face mask before entering the room.
I arrive on the unit with the professional confidence of a staff member and the profound humility of a survivor. I park my bin on the counter at the nursing station and begin inviting patients to my creative arts group. The first bedroom door is closed and the room is dark. I sterilize my hands before entering, knock quietly, and slowly open the door a few inches. I speak into the darkness, my voice calm and steady, waiting for a reply before asking permission to enter the room.
UCSF Benioff Children’s Hospital Oakland is a Level 1 Trauma Center. There are 191 beds in the inpatient units. Many of the kids at this hospital are experiencing complex and life-threatening medical conditions. Children’s Oakland does not have a burn unit. The children and teens that I work with are being treated for pediatric cancers and acute traumas, such as spinal cord and traumatic brain injuries.
This is my 10th year as an artist in residence. I work in close collaboration with Child Life Specialists and our psychosocial team to triage the clinical needs of our patients and families. I do not utilize art-making as a means by which to diagnose medical conditions. Rather, I view the art-making process as a way to empower children and teens in the hospital. Art enables the patient perspective to be heard.
I wait outside of the doorway and let my eyes adjust to the darkness.
A voice emerges from the room: “I’m awake; you can come in.”
I enter the dimly lit room and sidestep around the pulled curtain. A 15-year-old boy sits on the window seat, wrapped in blankets. The IV pole emits a low, rhythmic murmur as the pump circulates medication. The breakfast tray sits on the bedside table, untouched.
The boy points to a chair across the room. I drag it over and take a seat, settling into the space. I introduce myself and begin to describe our creative arts program.
Art sessions are offered to patients of all ages. I facilitate both group programming activities and one-on-one art sessions at the bedside, depending on the individual needs of each child or teen.
I also co-produce a weekly talk show called the CHO Show. The show is filmed live in our Teen Lounge and screened to all inpatient hospital beds on the closed-circuit television station. Children and teens who are unable to leave their bed can call in, interact, and participate from their hospital room.
Using this platform, young people can connect with each other on their own terms and in their own words. The CHO Show offers opportunities for collaboration across different medical units, and across multiple hospital admissions. Several of our teen patients have participated on the CHO Show throughout their childhood.
Back in the room, we start with small talk. Our conversation is frequently interrupted by nurses taking vital signs or delivering morning pills.
As I speak, I watch carefully for nonverbal cues: A shift in posture. A tilt of the head. The emergence of a smile. These subtle responses inform the direction of our conversation. I don’t ask about his treatment plan. I don’t inquire about his chemo schedule. Instead, I’m curious to learn more about his creative interests.
As we discuss potential art projects, the conversation ebbs and flows. I share a few examples of creative projects that other teens have worked on during their hospital stay.
Selena, one of the other teens in our oncology unit, transformed a traditional hospital gown into an original dress design. She also made original jewelry and accessories using medical supplies. She then filmed and edited a movie of her social worker walking the hallway as a fashion runway in our Bone Marrow Transplant Unit.
Joseph, who has been coming to the hospital since he was an infant, filmed and edited a tour of the hospital while he was getting a blood transfusion. Through the film, he wanted to assure other patients that they will feel supported and cared for during their stay. Joseph’s film was screened at a national film festival, but most importantly, the film has been viewed by many of Joseph’s hospitalized peers and those who have come after him on the same unit.
Aaron, who has visual impairment and was undergoing inpatient medical treatments, expressed an interest in painting. In response, I reached out to John Bramblitt, a painter from Texas who lost his vision due to complications with epilepsy and Lyme disease. I met John during Phoenix World Burn Congress 2017, when he was facilitating a public art activity at the Dallas Art Museum. Bramblitt agreed to do a virtual Q&A that I arranged with the patient in his hospital room. They discussed painting with touch and the use of guide dogs.
Elijah, a patient recovering from a pediatric stroke on our rehab unit, created a stop-motion animation in which he animated his own plays in a Warriors Game. I connected him with Samoana Matagi from Utah who offered a virtual Q&A and provided peer mentorship. Matagi, also known as “The No-Handed Bandit,” is a burn survivor, a bilateral amputee, an athlete, and a popular YouTuber. Matagi films and edits his own YouTube videos demonstrating the ways he adapts his activities, including playing basketball and snowboarding. I met Matagi at Phoenix World Burn Congress 2018.
My commitment to arts in healthcare is rooted in my own experience as a burn survivor. In 2002, I survived a third-degree burn injury on 25% of my body surface, primarily on my legs and feet. Art-making has helped me navigate the many challenges of burn recovery and document my decades-long healing process.
Art was a purposeful tool with which to explore my physical and emotional state following my burn injury. In the early stages, I used drawing, painting, and printmaking to document my physical recovery as I relearned to walk. The effects of post-traumatic stress disorder (PTSD) on memory formation and brain function was a theme that emerged in my artwork. In turn, this helped me see the need to seek out professional support.
These experiences have imbued in me a deep appreciation for the ways in which the process of creating art can unlock unexpected opportunities for healing. Even today, years later, I continue to explore my own art practice alongside my work with patients.
I often refer patients to the brilliant painter Katherine Sherwood, who integrates brain scan imagery into her painting process. I have found that the work of break dancer and choreographer Bill Shannon, aka “Crutch Master,” is especially appealing to teens.
Graphite drawings by prolific artist Riva Lehrer are an incredible reference point. Her portrait of the late playwright and actor Lynn Manning, who is blind, has been particularly poignant for teens on the rehab unit who have been hospitalized due to gunshot wounds, as Manning survived a similar injury.
Back in the room, we begin to unpack the ways my patient’s interests might plug into a creative project during his hospital stay. What creative concepts are emerging for him in this moment? What tools and materials are sparking a sense of curiosity or intrigue? How do his ideas intersect with the themes other teens in the hospital are thinking about? Ideas build on each other and a creative project begins to take shape.
The arts offer a powerful model for improving the patient experience in pediatric healthcare. Art builds morale and cultivates resilience among children and teens in the hospital. It connects us with our shared humanity. Years ago, an 11-year-old girl participated in our hospital art program and declared: “You can take my appendix, but you can’t take my creativity.”
Sadie Wilcox has been facilitating creative projects with pediatric patients since 2008. She has previously worked at the San Francisco Art Institute, the Asian Art Museum, and the Children’s Creativity Museum in San Francisco. Sadie received her Master of Fine Arts from the University of Michigan.
After surviving a violent arson assault in 2002, Wilcox became an active member of Phoenix Society for Burn Survivors and trained as a Phoenix SOAR® (Survivors Offering Assistance in Recovery) volunteer. She has also coauthored resources and served on the board of directors at the Alisa Ann Ruch Burn Foundation.