Emma Rooney: Running on Stories
I first took-up the role of storyteller as a child while playing school in the basement, during the summer holiday with my younger sister. I’ve maintained the role until today by always carrying a basket of books while working with children and youth in community gardens. My storybook collection remains my most treasured possession. My favorite story is “Brundibar,” by Tony Kushner and the late Maurice Sendak, a tale of two young siblings on a quest to fetch milk for their sick mother.
It seemed only fitting that I would work with my sister, who is an artist and illustrator, to create a digital story of my childhood with type 1 Gaucher disease, a rare genetic condition that I was diagnosed with at the age of three. The story, “Emma’s Garden: Growing with Gaucher,” was made as a gift to our parents to honour their vital care and with the hope that sharing our family’s journey will encourage others in the rare disease community to do the same.
I believe that rare disease stories really matter to raising awareness, to education, and to connecting the community, but I also know how challenging it can be to tell your story. I can feel my heart racing just thinking about having to get something personal down on paper. While I keep returning to writing as still the best tool at my disposal for expressing myself, I’m excited to be learning more about digital storytelling and audio narrative. This forging of new storytelling paths will be shared.
As an avid runner, I always find my best storytelling inspiration while out on the trails. My body may in fact be running on stories and as a guest blogger for Global Genes, I hope to share my energy source while offering storytelling advice for individuals and patient organizations.
As I try to understanding the expanding role of storytelling in the global rare disease community, my monthly posts will showcase a diversity of talented storytellers, explore the popular platforms being used, unpack the types of stories being told, and draw attention to the important missing voices. I hope you’ll join me at the storytelling circle and find new support for putting your rare disease story out there.