My daughter was diagnosed in 2007 with a rare autoimmune disease, Juvenile Myositis (JM). Since then I’ve been writing poetry about my journey, teaching writing workshops for parents and teens who live with, or care for others, living with autoimmune diseases, and working with a national foundation that supports research and awareness for JM.
Over the past few years I have received artist grants to interview parents of kids with a variety of autoimmune diseases and I wrote a book of poems based on those conversations. This led to the publication of my chapbook, The Moth Eaten World, Finishing Line Press, 2014.
Now, I am embarking on The Effects of Misdirection: a poetry and visual art project on the psychosocial, scientific and medical aspects of autoimmune diseases that I dreamed up a couple of years ago. I have received grants from 4Culture; City Artists: Office of Arts and Culture, Seattle; and Artist Trust to pursue this project.
In my work supporting Seattle Children’s Hospital (SCH) Rheumatology Department and as a board member of the Cure JM Foundation, I was fortunate to meet a forward thinking scientist and doctor, Jane Buckner, who is the Executive Director of the Benaroya Research Institute (BRI) in Seattle, Washington. BRI’s mission is to find the causes and cures of autoimmune diseases, including diabetes, multiple sclerosis, allergies, and rheumatoid arthritis, to name a few of the 80 diseases. Dr. Buckner became excited about this project and subsequently I am partnering with BRI to bring this project to fruition.
I have conducted 28 interviews of scientists, doctors / nurses, patients (both adult and teens) and their caretakers/parents. Currently, I am writing poems, organizing artwork for the final publication of a poetry and art book, and setting up reading venues for the fall. The books will be available in clinics and hospitals locally that see patients with autoimmune diseases and the readings will be free and open to the public. For more information and to be put on a mailing list for notification of the readings, please contact me.