This fall I had the privilege of participating in a Harvard Medical School Continuing Medical Education workshop that focused on individuals sharing their personal narratives. The presenters were coping with either a life-changing medical condition or caregiving for a family member who is suffering.
The workshop was created and delivered by Annie Brewster, MD, Internist at Massachusetts General Hospital and Executive Director and Founder of Health Story Collaborative (HSC), and Jonathan Adler, PhD, a Clinical Psychologist, Researcher, and Chief Academic Officer of HSC.
Dr. Brewster spoke about how she kept her multiple sclerosis (MS) diagnosis a secret for years, but later discovered the therapeutic value of sharing her story. Dr. Adler spoke to research that cites that individuals who write and share their serious medical illness experiences have had improved physical and psychological outcomes. He continued by discussing “narrative identity,” a creative process through which individuals challenged by serious illnesses can make sense of what happens to them, and even make meaning out of experiences beyond their control.
The guest speakers, Elizabeth Jameson, a woman living with MS, and Paul, a caregiver for his son who struggles with an opioid addiction, powerfully articulated the power of sharing personal narratives. After Elizabeth’s MS diagnosis abruptly ended her law career, she searched for ways to express herself and to connect with others. She began to create art, and her subject matter was MRI scans of her brain. Elizabeth’s colorful and stunning etchings and paintings show how she reinterpreted stark black-and-white MRI images into creative and often uplifting works of art. Her art is in permanent collections at the National Institutes of Health, UC Berkley, Harvard, and other institutions. Even though she is now a quadriplegic because of her illness, Elizabeth has turned her creative talent to writing and has published articles on patient-centered health care in The British Medical Journal, WIRED, The New York Times, and other publications.
The other presenters were Paul (who doesn’t share his last name) and his son (represented by an actor) who performed Resurfacing, a narrative they wrote together about their experiences as a father who sometimes succeeded and other times stumbled in his role as caregiver, and his son who was in and out of addiction rehabilitation settings for over a decade. The raw honesty with which they recalled their many painful and frightening experiences and the authentic portrayal of their anger, fear, distress, and love rapidly drew the audience into their spellbinding drama. The writing of their narrative was also guided by Dr. Brewster and Dr. Adler, and it was shaped into a play in collaboration with COAAST, Creating Outreach About Addiction and Support Together.
If any of the 100 workshop participants, who were social workers, psychiatrists, nurses, doctors, and about a dozen caregivers and patients, had harbored doubts about the healing power of sharing personal medical narratives prior to this session, there was no doubt that by the end of the day, they were believers.
“Emerging” by Elizabeth Jameson, a solar plate etching.