Often readers ask about the title of the book I wrote with my doctor, Michael Lockshin. It’s Dancing At The River’s Edge. The title was plucked out of the text. The words appear close to the end of the book. We were running out of ideas, and so were our friends and colleagues. We wanted to encapsulate the essence of the book’s message in a few short words – but they had to be compelling. Our publisher suggested we take a line from a poem I wrote years ago. It begins with a proverb (the original source is disputed, but claimed by many) -- Don’t push the river, it flows by itself – The poem’s last stanza concludes: It flows above us and beneath us but in the middle we dance in the moonlight, at the river’s edge.
For me the metaphor is both mystical and simple. Where is this river’s edge? Does it exist in an imagined universe, an alternate galaxy, where water flows above and below? That will have to suffice for the mystical part. The simpler description is this: my chronic disease can make me feel I’m drowning. The personal image that comes to mind is Venice during a heavy rainstorm -- when there is also an acqua alta (high water) alert. Then the canals overflow and flood the city. The only way to navigate is by walking on the top of the infamous catwalks the municipality quickly installs. During those times I have quite literally felt water flowing above and beneath me.
After the publication of Dancing at the River’s Edge, the phrase took on a life and identity of its own. Many readers told us they liked the image because it was about finding dry land in the midst of the swift currents of suffering and hopelessness. The notion of daring to dance helped them think past where they were in the present moment of disease. I had never dreamed about rivers or dancing in the moonlight. But after the book’s publication, during a severe flare, I started to dream a great deal about rivers, moonlight and dancing, and drowning. In these dreams, a close friend swims out to me; he holds me tightly and won’t let go. At the end of each dream we dance together in the water. When I first wrote the poem I believed it was about the bonds of friendship. Ultimately, these words have come to symbolize the strength and fortitude I see in women and girls with chronic disease.
I talk and write about what is required of those of us who live with serious chronic illness – of paramount importance are the qualities of resilience and bravery. I’ve attempted to maintain those within the context of disease, but for a long time didn’t employ them in the rest of my life. I didn’t have the courage to ask for help. I didn’t want to live in the open, without the camouflage of secrets and denial. I tried to live as if I were not sick. I devised tactics and strategies to disguise the truth for fear of losing love, frightening people, and perhaps most of all, owning up to what I might not be able to do or achieve. What originally began as a desire to protect my mother from the truth of my disease became habituated behavior. It was a way of life. Hiding, going under cover, not breaking stride – it was life lived primarily as an actor in an unending performance.
My rivers have rushed past and around me. Much I hoped to experience eluded me. With limited remaining options for life’s choices, when there wasn’t much left to decide personally and past the time for the likely fulfillment of a new career, I chose to do what I had never done. I told the full truth about a life with chronic disease as a constant companion. I talked about what chronic diseases do to the lives of women and girls, families and relationships. When I did, the river of disease stopped tossing me around as though I were a piece of debris. Along with the strong voices of so many others, we pushed the rivers back and diverted them. We took ownership -- they became our rivers, not ferocious enemy waters.
A separate land, a secure and secret place does exist. There’s always moonlight there, and a sandy but solid riverbank where we come together, daring to walk to the very edge -- not alone, but with each other -- encircled in a loving and understanding silence – with appreciation for all we’ve endured, and in gratitude for what we offer one another.
--Dancing all the time.
© 2013 Alida Brill