Have you ever been asked to contribute a story, about living with a rare disease, and even though you want to support the cause, you just can’t work out how to go about it? I’ve come to find that, while messy, I do have a personal storytelling process that guides me, and by learning more about how I work best, I can use it to my advantage.      

Coming from a family of artists, I always imagined myself as a visual learner. Recently I came to realize that, for me, it’s more about words than pictures. I had never considered the workings of my brain carefully until reading Temple Grandin’s explanation of her thought process living with autism. In Thinking in Pictures, Grandin describes having a 3D movie playing inside her head, guiding her through meticulous problem solving. After reading this description, which I found fascinating, I closed my eyes and saw clearly that, for me, there are no real images inside, only reams of words wallpapering my mind. Being a writer, I organize my thoughts by first running through a stream of words.

Close your eyes. Do you see the conversations in your head expressed through words? Pictures? Or maybe another method altogether? Have you considered your own best approach for working through ideas?

My computer desk reflects the writing life I’m living, with its stacks of notebooks, cue cards, journals, and cereal box writing pads, all holding “notes to self.” When I don’t have a pen and paper, I’ll start dictating while out running, carefully typing each word in my mind’s eye for safe keeping.

But despite floods of potential writing material, every time I go to form an actual story on paper that I intend on sharing, I begin to panic. It’s difficult to find the flow, be it a self-assigned blog post or a story assignment I’ve agreed to. When a friend through running recently commented on the ease at which I keep telling stories, I felt like a fake accepting the compliment. I would rather endure an ultra-marathon training’s plan than complete a written assignment. I often find writing a strenuous activity and almost always riddled with jolts of anxiety.

And frankly–most of my writing comes to life while I’m tethered to an IV pole, with no way to run during my biweekly treatment sessions at the hospital. It’s within the sterile clinic room, once the liquid begins to drip, that the words finally flow into focus.

Even though it’s been many years since my mother accompanied me on these routine visits, I still sense her supportive hand, as I pass the hospital time writing. I cannot write a comprehensible story without first picturing who exactly I’m telling the story to, like my mom. Trying to communicate without an audience is as futile for me as trying to send an email message with the address line left blank. Only when I imagine my story to be a gift for giving am I able to find the right words to express. By dedicating the actual story making process to a particular person, group of people, or even an editor, I become a more generous storyteller. By framing in gold the audience I care to touch with my story right from the start, I make the undertaking less of a chore.

When I follow through with my own process, only then am I able to communicate my story. Through sharing this story, I get to make new connections that feed new stories. Storytelling is as necessary a therapy for me, as the enzyme replacement therapy I receive for managing my Gaucher disease. I’ve heard a similar sentiment expressed by fellow My Invisible Life storyteller, Jackie Barreau, the published author of Through A Mother’s Eyes,who writes, “I found it cathartic and healing to recount my journey as a caregiver/parent going through the death of my two sons and now my daughter’s rare disease.” At the end of the day, following a process that is true to you can reveal and surprise with rich insights and affirmations.

Growing a community of rare disease storytellers becomes a vital tool for promoting health. Will you be joining the storytelling circle? And if you do, who do you picture sharing your story with? What do you need to overcome to share your story? For me, understanding the process – and who the story was truly for – was key to making my story actually come to life. Where are you at in your storytelling journey?

If you’re looking for inspiration getting started on your own health story, visit the My Normal project where I share 10 possible first steps.

 

You can tweet about this RARE Daily series using the hashtag #RunningOnStories

 

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