Medical Art: Communicating the Patient Narrative
I am an artist who mixes art, medicine, and the stories of healing and survival into experiences that appeal to both the medical community and the artist-patient community. I have drawn from my experience as a lifelong patient of Gaucher Disease, an enzyme deficiency that affects bones, joints and organs, to curate dozens of art shows of patient artists at three major medical schools.
My 18-year project, “Scarred for Life: Mono-prints of Human Scars” chronicles the trauma and courage of people who have lived through accidents and health crises, the events that suddenly change people’s lives forever. This projects highlights the importance of storytelling and survival acknowledgement in the healing process.
My own prolonged hospital stays as a child first influenced my artwork when I began at age six by mixing art and medical supplies in my hospital bed using I.V. tubes, bandages and pipe cleaners. Over the years art allowed me to become comfortable with talking about my situation, and communicate my own experiences in a way that engaged the listener. I am now a nationally recognized artist, curator and patient advocate talking at national conferences to patients, medical professionals and students about the experience of illness.
The stories I hear of suboptimal doctor-patient interactions while doing my Scarred for Life project drive home for me the crisis at the heart of healthcare, the inability for doctors and patients to communicate with each other about anything but the most superficial elements of illness. And so I have started speaking about living as an artist with illness and curating the work of other patient-artists like myself. The art and the stories that create the art are fundamental tools in the ability to describe the “lived experience of illness”, foundational element of patient-physician communication that is rapidly being recognized as important to the compassionate practice of medicine.
I’ve developed programs and workshops around communication of the patient narrative and my goal is to encourage and develop other patient-artists like myself to align themselves with medical schools and create a paradigm shift in medical education.
Interview with Ted Meyer
Do you have a favorite experience from your speaking career?
The TEDMED was exciting because it was TED and that carried a lot of personal expectations, but I have liked all the talks I’ve done. Each time I get to meet very interesting people, all doing fantastic things that might never have been on my radar otherwise. So honestly, often the best part of a talk is the mingling after.
Who or what inspires you most?
I’m always impressed by people who think differently. People who might change their views over time because they saw a better way and didn’t stick to their old views just because it was how they had always done it before. People who admit their thought process could be improved upon.
I had to convince a lot of people to let me start my Artist in Residence program at UCLA. They had never had an artist working at the medical school before and I really needed to convince them that something new was needed. I called every two weeks for six months and each time I was told they didn’t need an artist at a med school. One day, the person whom I had spoken to over and over again was sick, so a different person answered the phone, someone who could see a different possibility, and 20 minutes later I was scheduled to meet with the Dean of Education. That person, because they were open to the idea of mixing art and medical education, started a chain of events that helped educate hundreds of students and medical professionals. That person who says, “Yes,” rather than “No,” always inspires me.
What do you gain personally from being a public speaker and artist?
First, it is always great to do a talk for and with a group of educated and dynamic people. I learn about what everyone else is doing, what their projects are and what their life’s missions are. Often these people know that their ideas are bigger than they are. I’ll admit I’ve been to some conferences with futurists and I had no idea what they were talking about, but it was still exciting.
For years I was afraid to go in front of large groups. I had a disastrous experience reading in front of my class in fourth grade. But the first time I spoke to large group, about 2000 people, my fear vanished. It was very empowering.
As for the art aspect, I enjoy showing art that might never get an audience in the traditional Art World. I like empowering artists to tell their stories. Powerful images about illness might be considered too distasteful or disturbing for a gallery, but my program gives voice to the patient artist’s whole life and condition.
What experiences have made you feel that you are achieving something with your career?
There is always wonderful follow-up from my talks. People come up to me afterward, or write me days or months after hearing my lectures, to tell me about their survival from medical issues, or how they can now accept their scars, or how my talk helped them understand medical experiences of a friend or loved one.
It is not unusual for me to get an email from someone on the other side of the world, sharing a photo of their scar, and telling me their survival story. To know that people are following my work in places like Burkina Faso or Australia is heart-warming. The fact that people take the time to write to let me know that I’ve made a difference to their life, it is sort of amazing to me.
What are 3 tips you would give for remaining resilient through difficult times?
When I was a kid I spent a lot of time in the hospital and my parents were great—they never treated me like a victim. They said this is what you have been dealt and you have to rise above it. They also pointed out how many people in the hospital had it worse than I did. So I would say, always put your situation into context. It might be bad, but it could most always be worse.
Making some long term goals has really helped me. A few years go I purchased a whiteboard and hung it in my office. I started writing all my goals on it. It wasn’t that writing things down made them happen in any magical way, but just having the list in plain sight all the time kept me focused on those ideas. Sooner or later I will figure a way to move that idea forward.
I often joke, “Well, no matter what, I am not in a war or famine. I’m not a refugee. I’m not in a country hiding out from my own government. I remind myself that even at the worst, I have a charmed life. Sure, I have a medical problem, but there are now treatments that were unavailable 30 years ago. Had I been born just a few years earlier I might not be here now.
What would you consider the ideal patient experience?
Ideally, a doctor should listen and take into consideration one’s whole life when working on treatment. Doctors should try to see each patient as a person with a situation, not a defective spleen or liver.
Each patient has a life and story, abilities, and desires, even if they have a terrible prognosis. A great doctor can help a patient manage their reality and achieve some goals all while continuing treatment.
That is why I bring artists into medical schools. I want future medical workers to see that even the worst illness can be a muse, for art, or family conversation and understanding.