I strongly believe that patients should tell their own damn stories, in whatever way makes sense to them. Do you want to support someone who is suffering as a loved one or health professional? Listen to their story, no matter how difficult it may be for you.
While I’m a word person, I’m fascinated by those who use other forms of art to share stories. The Portrait of the Patient Experience is a TEDMED talk about the intersection between health and art. Ted Meyer is a visual artist from Los Angeles who has created visual art, first from his own scars and then from the scars of others. He facilitates discussion between artists with chronic diseases as the Artist in Residence at the University of Southern California’s Keck School of Medicine. He does what I call The Important Work.
Here’s a favourite quote from his talk: People always say – art should be about something until art is about something and then they don’t really want to look at it.
On a personal note, I shared the podium with Ted two years ago at Collaborating Across Borders, an interprofessional conference for health academics. While I spoke about this, Ted impressed with his humour and creativity. I knew he’d go far and that he did.
He says about patients: Pre and post scar narratives are held together by their scars to give their life a new meaning.
I strongly believe that we can inspire, motivate and educate by sharing our stories in whatever form that makes sense to us. Importantly, telling our stories also helps us to heal.
Arthur Frank references Judith Zaruches in his formative book The Wounded Storyteller, Stories have to repair the damage has done to the ill person’s sense of where she is in life, and where she may be going. Stories are a way of redrawing maps and finding new destinations.
There are many ways to tell your story: a private journal, the whispered word, poetry, visual art, music, dance – or any other artistic form. Creativity is an expression of you.
For those supporting wounded storytellers, it might be difficult to look at these scars. These scars remind us that we all have the capacity to be broken and vulnerable in some way. It is a great gift to those of us who are suffering not to look away.
There are so many secrets in the land of being a sick person – secrets associated with being that sick person and secrets in the health care world we are immersed in. Now I’m no Oprah and I know nothing for sure. But I do have a strong sense that the telling of these secrets will help set us free.