I’ve decided to declare it patient advocacy month for White Horse Medicine! Continuing on the thread of my last blog on embracing our scars I want to celebrate some of the amazing patient advocate connections I’ve made in my efforts over the past few months to launch an innovative new patient-centered clinical model of care with Doctor Julie.
One of the first things we undertook was to attend together a Harvard Medical School continuing education course on publishing. Achieving Heathcare Leadership & Outcomes Through Writing and Publishing in March was a priceless chance to work with a world-class panel of editors and publishers, as well as share stories and experiences with other medicine and wellness thought leaders. The synchronicity factor was strong the moment we decided to attend and it carried through until we arrived home. One of these days I’ll blog about the self-regulation techniques I used to breeze through the challenges of the long flights to Boston. But back to my story.
The first night we arrived in Cambridge we went right into a session in time to hear course director Dr. Julie Silver tell the audience about the power of having a memorable story to tell when approaching the field of medical publishing. She then described the humorous approach of Austin’s pelvic health expert, Dr. Beth Houser, the very person whose experiences inspired us to attend. Yes, in the sea of 100+ attendees a year, the single doctor whose positive experience two years earlier had sealed our decision to go to the conference was the example that Dr. Silver happened to choose to regale the crowd with. Apparently Beth’s “I’ve got to pee” comments at the mic were memorable!
Soon I raised my hand and volunteered to tell my story and “pitch” the book I’m writing. I thought surely I was the only non-physician writer in the crowd. And I was wrong. After I left the microphone a petite young woman held the audience spellbound as she told us about her experiences as the first non-HLA-matched combined kidney and bone marrow transplant patient in 2002. More than just a scientific breakthrough, the procedure gave her a vital life back after years of being debilitated by a 20 pills a day regimin following her conventional transplant years before. I made a mental note to say hello to Jen Searle the next day and went back to my room exhausted.
When I walked into the conference room the next morning I looked for Jen to introduce myself and was stunned to notice we seemed to have gotten the same fashion memo! Standing in front of me was Jen in “my” red wrap dress and black boots.
Okay, so her boots were va-va-voom heels and mine were “practical” flats. But you get the picture: Same. Exact. Dress. Black boots. Only two patient educators (that I know of) in the room. Check it out.
Not unlike Doctor Julie did, patient advocacy powerhouse Regina Holliday seems to have had our first meeting foreshadowed by the sudden appearance of peacocks. When we met for dinner one night during her trip to Austin she mentioned being really moved by some paintings of peacocks that were hanging on the wall when she dined with her Livestrong friends after a presentation at the foundation’s Austin headquarters. She felt compelled to take a photo of them and she whipped out her phone to show them to me after we met later that day. She even included this in her blog post about her trip.
I met Regina just a few weeks after the Harvard event at a meeting of Nebular Health Tech when she was in town to speak at a symposium on health technology and Nebular hosted a viewing of her documentary short, 73 Cents. Regina and many of the other attendees at this meeting shared one powerful thing in common: they had each found a way to turn a life changing patient experience into something positive. Just like Regina had with her mural painting and patient advocacy efforts, many of the developers of medical apps were inspired by the need for something unique for themselves or a loved one. Several had taken up the banner of advocacy and activism to soothe the losses and traumas of a system that had failed them in some way.
Although we hadn’t come together to specifically share our stories, organizer Erin Gilmer had the wisdom and generosity to end the screening with an opportunity to let everyone introduce themselves and tell us what had brought them to the meeting. One by one, each person displayed amazing vulnerability and courage.
From the mother who had challenged a doctor over his cancer misdiagnosis in her child, to medical device failures, to mental health challenges, each attendee extended the bonds of partnership-in-arms to the others in the room as they shared their personal stories. I was moved beyond measure. Although it didn’t come as a surprise to me after the fact, I was surprised at the spontaneous nature of what I was witnessing. I was gifted with something very powerful.
I’ve witnessed the power of storytelling for decades. First as a designer interpreting my clients’ needs and desires into the medium of physical spaces, and then as a professional storyteller hired to tell other people’s stories. Year after year I’ve seen what the process of unearthing and recording personal stories can do. Whether of professional missions or philanthropic legacies the effect is the same: it is the process and power of being seen and heard that changes us.
In a recent course on Narrative and the Brain with narrative medicine pioneer Lewis Mehl-Medrona I learned more about exactly why this power is so crucial to the healing process. Stories help us understand the signals in our brains and regulate the systems involved – especially those parts of us that are wounded. The body and the brain are always seeking wholeness, homeostasis. And stories are often the tool. As we embody our stories we support emotional regulation and healing.
Creating a coherent story of a traumatic event and incorporating it into one’s self-representation is fundamental for the successful treatment of post-traumatic stress disorder . – Brewin, Dalgleish & Joseph, 1996
Most human beings have had some kind of trauma. It exists in varying degrees in all of our lives, and our reaction to it is very diverse. And at the very core of the healing response in the aftermath of a traumatic event is the transformation of its unspeakable imprint into a story that can be shared with others without reliving it.
To those of us that have lived through the trauma of not being honored and well served by the institutions we sought help from these wounds can be especially desctructive if not tended to. So there is no better medicine than sharing our wisdom and serving a greater good to create something better.
And so it is that those of us who carry the Patient Voice are banding together to lift it. Both alone at times, and in unison, when we’re lucky enough to cross paths with each other. This is how we act as lantern carriers, and how we serve those that come behind us on the path towards wholeness.
Photo :: The Walking Gallery is an interactive art experience incorporating patient advocacy and storytelling. Founded by artist Regina Holliday, these walkers were recently in attendance at a meetup on healthcare technology.