Suzanne Edison, MA, MFA

Poet • Educator

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Poem and Autoimmune Disease–The Body Lives Its Undoing

I am happy to share this poem, The Body Lives Its Undoing, just published in the online journal Intima: A Journal of Narrative Medicine. Take a look around this excellent journal for a variety of writing and art relating to illness, health, medicine and personal stories.

Does not include Juvenile Myositis, (orphan disease in children) or Dermatomyositis, (in adults) both of which are rare but also autoimmune diseases.
Autoimmune Diseases
does not include orphan diseases such as Juvenile Myositis.

This the first poem to be published from my new project in conjunction with The Benaroya Research Institute. The project, titled, The Effects of Misdirection:How the Immune System is Led Astray, will include a chapbook of poems and original, visual art, along with some scientific images/scans. There will be readings in the fall with an opportunity for Q & A with some of the interviewees. As stimulus for the poems, I conducted 28 interviews with researchers, doctors/nurses, patients (both adults and teens) and caretakers. The artwork is courtesy of working visual artists who are connected to BRI or are patients or caretakers.

 

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Poem in SWWIM

I’m happy to have a poem online in SWWIM EveryDay.  

 

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Poem published in JAMA (Journal of the American Medical Association)

 

I am happy to announce the publication of my poem, Still Life Without Skull on April 17, 2018 in the Journal of the American Medical Association.

While writing about the experiences my child and I have gone through is painful at times, I fundamentally believe that by trying to capture those moments, feelings and events in writing. I find an order from the chaos they brought.  And I hope that these words might reach others who’ve gone through similar experiences, thereby making a connection and helping them feel less alone.

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The Effects of Misdirection

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.