The Journey

Life is a journey. The journey with chronic disease may take us to different places, but our experiences are what makes us who we are. Whether those experiences are from the perspective of the child going through the illness, or the caregiver who suffers their own trauma from the series of events, all have a place in shaping who we become, and how we cope. Suzanne Edison is a very talented writer who I have had the privilege of getting to know through our JA journey. While our children may be suffering from different types of autoimmune diseases classified under the JA umbrella,  many of our coping experiences are similar. While I used writing Living With Juvenile Arthritis: A Parent’s Guide as a means to make sense of my kids’ journey, and to help others, Suzanne uses writing as a means to cope and teach others how to process the feelings associated with life and chronic illness. Recently she published “A Journey Through The Moth Eaten World,” and I am proud to share her story here.

Suzanne reading

I have written poetry since I was in high school. It has often been a way for me to understand what I’m feeling and helps me focus my thinking. But when my daughter was diagnosed at age 6 with a rare, autoimmune disease, Juvenile Myositis, I was unable to write. The first several months after her diagnosis I spent educating myself about her disease. We spent many days and nights in hospitals or doctor’s offices, our family was learning to navigate the medical system, pharmacies, new school realities and help my child cope with pain, drug side effects, a changing body and social situations. My energy was tied up in coping, I was in what I now term, survival mode.


Before my daughter got sick I’d been in a writing group for a couple of years. My fellow poets didn’t have children but one of them was a psychotherapist and she came to my house one day, sat me down, gave me a couple of writing prompts and helped me unleash the tidal wave of feelings that I had bottled up.  Pretty soon I was writing to “save my life” and I didn’t think much about ever publishing the poems. I did however take some of the writing to my group and they encouraged me to keep crafting the raw material until I had a couple of poems that were ready for the world to see.


Eventually my poems made it into print. I decided to apply for an artist grant that would give me the time and some income to write about the journey with my child. I published a small volume of my work with this grant, Tattooed With Flowers, and many of those poems ended up in literary or medical journals. I started a writing group for other parents whose children live with a chronic illness and encouraged them to allow the words and writing to “hold” them. I knew from my own experience that we not only needed outlets for our feelings, but a way to tap into our creative energy, to restore ourselves, in order to keep doing the caretaking work our children needed.


I began to think that parents who have children with chronic illness are also experiencing a kind of post traumatic stress, one that my old philosophical approach to dealing with trauma by way of catharsis was not able to contain. I began reading up on emotions, trauma and the brain and began thinking more about how to structure writing exercises that not only allow us to express our feelings and thoughts but help us make connections to new ways of thinking. Writing is a way of containing and extending our thinking/feeling selves.


With the help of another grant I embarked on a new poetry project, that of interviewing parents who have a child living with chronic illness. I wanted to give voice to others who couldn’t do it for themselves, to validate their stories and experiences so they could see themselves reflected in art and culture, and perhaps feel less alone. I published these poems in another small book, What Cannot Be Swallowed, and gave readings at Seattle Children’s Hospital and an affiliated clinic, Odessa Brown Children’s Clinic.


In 2013 I began compiling a group of poems that reflect on my life and others who have a child with an ongoing health issue and put together a manuscript called a chapbook. A chapbook is smaller than a full book. This one, The Moth Eaten World has 24 poems. It was picked up for publication by Finishing Line Press and will be out in early May, 2014. It is available for advance sales here.


Here is what two poets have to say about the book.


Suzanne Edison’s The Moth Eaten World held me breathless. Poem by poem we explore not just a failing body, but a daughter’s disease and a mother’s journey through this world.  The poems fill us with questioning concern—I left God in her Temple when you got sick—but she compassionately walks the reader through. Not many poets can write about illness well, especially the illness of their own child, with such precision and grace that Edison has.  These poems offer so much to the reader—strength and struggle, beauty and fear, faith and doubt—Edison is not only the detailed observer, but the moth, the mother, and the world held together, she writes a powerful and necessary book for all.

— Kelli Russell Agodon, Author of Hourglass Museum & The Daily Poet



In The Moth Eaten World, Suzanne Edison talks about a subject no one wants to talk about: the sick child, and accomplishes this onerous but fundamental task by invoking mythologies, African tradition, story telling and the use of fresh metaphors to guide us through a deep and challenging world. She describes the accouterment of illness with a cleverness that invokes sticks in the sand instead of IV poles, angels instead of nurses, always in the presence of a mother’s partially cloaked desperation, and her fervent desire to “stitch you back whole” once again. All in all the book is a clear view of a catastrophic situation made palatable by the skill of the writer and a vision that uses language as warrior against the sorrow of loss.


–David Watts, MD, author of Bedside Manners, and The Orange Wire Problem.



I continue to write about my journey, to teach writing workshops for teens living with ongoing health issues and to their parents.  To learn more about me please go to my website:  I look forward to hearing from you.


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  1. It’s amazing the different ways in which people find to tell their stories. I am sure the poetry is beautiful and I look forward to reading it. Thinking about this, I wonder how and artist would paint the story? Or a musician compose it? Fascinating to think about it.
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