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By Dr. Annie Brewster
My experience in the health care system — both as a physician and as a patient living with multiple sclerosis — has convinced me that the current practice of medicine squeezes out what is a most essential element of healing: the stories of peoples’ lives.
In response to this void, I started collecting patient's stories in 2010, and these pieces have been featured here on CommonHealth, as part of the Listening to Patients series.
Through these deep connections, I've seen firsthand that there is tremendous healing power in stories — for both the storyteller and for those listening. Research supports this claim.
Last year, I launched Health Story Collaborative, Inc. a nonprofit dedicated to harnessing the healing power of stories through collecting, honoring and sharing these narratives. The goal is simple: to keep patients’ voices alive.
Last week, as part of the nonprofit, we launched a new program called Healing Story Sessions, live gatherings where patients share their narratives. I like to think of them as part "Moth" radio hour, part AA meeting (though of course, this isn't about addiction: it's all about standing up and sharing in a safe and supportive environment). The goal of these sessions -- designed in collaboration with Jonathan Adler, Ph.D, an assistant professor of psychology at Olin College of Engineering in Needham, Mass., whose research focuses on the psychological function of our stories and their relationship with health — is to empower patients and build community.
Each session features two patient storytellers and about 15 of their invited "guests." Prior to the event, storytellers work to craft a written narrative using Health Story Collaborative’s narrative guide, which provides some structure for eliciting these challenging stories. They also work with Adler and with me to shape what they’ve written. Then, when the time comes, they speak their narratives out loud for the selected audience.
The belief is that this public sharing is meaningful and therapeutic.
Last Wednesday, 30 of us gathered in a cozy room to hear the stories of Marie Colantoni Pechet, who has written about her cancer for CommonHealth, and Lara (who asked that her last name not be used). Marie is a 51-year-old mother with Stage 4 colorectal cancer who has been living with her disease for over six years. She is on a maintenance chemotherapy regimen and continues to thrive, surprising even her most optimistic doctors.
Lara, a 47-year-old mother of four children, has a fairly new diagnosis of Stage 2 breast cancer. She is now in the midst of chemotherapy treatment and awaiting surgery in May. Her mother died of this disease 15 years ago.
In this case, Marie and Lara knew each other prior to the event and chose to participate together, though this is not a prerequisite.
Lara and Marie sat together on a couch in the front of the room, and invited guests sat in a circle around them, some on sofas and some on the floor.
First Lara told her story, then Marie, followed by applause and cheering and a few questions from the audience.
The supportive energy in the room was palpable.
One audience member responded like this: “It was tremendously powerful. I came away feeling...spiritually renewed. I love that the energy was felt both ways — transmitted to the audience by Lara and Marie, and that this intensity and power circled back to the storytellers.”
And Lara said: “For those who muster the courage to tell their story, there is great benefit in both reflecting to compose the story as well as receiving the reaction from the audience as a gift.”
Health Story Collaborative will continue to offer this program as a free service to patients and their friends, family and other loved ones, and refine the process along the way.
If you or someone you know may be interested in participating, please contact us at firstname.lastname@example.org.
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