Suzanne Edison, MA, MFA

Poet • Educator

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Writing, Chronic Illness and (sometimes) Making Art

A friend of mine, Kim Poston Miller, is the mother of two boys who both live with forms of Juvenile Arthritis. This is a similar, but somewhat different disease than Juvenile Myositis, but many of the same medications are used in treatment, steroids and methotrexate to name two. What is even more common are the sort of experiences we go through as parents of children with an inflammatory, autoimmune disease.  Kim’s way of coping with her circumstances led her to write a book for parents called Living With Juvenile Arthritis: A Parent’s Guide and to maintain a blog.

She graciously asked me to write a short section for her book and has now included me in her blog. This recent blog post describes how I came to write and publish my newest chapbook, The Moth Eaten World, due out in May, by Finishing Line Press..

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Family Centered Care & Chronically Ill kids

In the January 20, 2014 edition of The New Yorker, Dr. Jerome Groopman writes about how we might best care for chronically ill children. He looks at teams of specialists that are trying to address chronically ill kids needs from more than one perspective. This is an issue close to my heart and involves a conversation that I’ve been privileged to be part of at Seattle Children’s Hospital.

I will not summarize this article, it is best to read it, but I will point out a couple of important statements and why they need to be taken to heart by other pediatric care providers and hospitals.

Christina Ulrich, an attending physician at Boston Children’s and Dana Farber says about treating pain; “…I learned you can’t treat a child’s pain effectively without understanding her anxiety and her social situation. It’s not just a matter of writing a prescription.”  This is profound.  She is talking about trying to understand a child IN CONTEXT, within herself, her family and her cultural background. We all suffer, but HOW we suffer and how we think about that suffering or that pain, can lead us to be treated in various ways.  For example, when a child is afraid of needles and needs an infusion, there are a number of ways to approach that. There are numbing creams and sprays to help alleviate the actual sting of the needle, there are Child Life experts who can talk the child (and help the family) through the actual needle insertion. They might also need to learn if that child NEEDS to watch the needle insertion in order to feel some control or whether distracting them and helping them focus on their breathing is better for their anxiety.

That is an example of a mild, but potentially frightening pain moment compared to a cancer patient’s treatment needs. In the latter case there might be others on the team that would help the child and the parents decide the best course of action for both pain and treatments.  Here is where my second concern comes into play; the family centered approach to decision making.

Janet Duncan, a nurse practitioner said, “we bring a little bit of a different perspective, because we sit with families, who teach us about how they make decisions. It’s not that there is a right or wrong; it’s really what is the best decision for your family, for your child.”  I don’t think I could say this any better. Doctors have medical knowledge but the family knows their child and the child herself might be old enough to express an opinion or need. All of this is important.

This is exactly what the Family Advisory Committee at Seattle Children’s Hospital spends time thinking and talking about to various providers and committees throughout the hospital. All of us are parents and we have had either good experiences of family centered care or bad ones.  Likely, both, and we don’t want to repeat the bad ones ever again.  More and more children’s hospitals are trying to move to a family centered model but it is still rare to have teams of specialists from various fields consulting on one case. Though potentially more expensive and time consuming initially, it may lead to better outcomes and reduced expenses as families adhere better to treatment regimens and their children feel better cared for.

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The Moth Eaten World

 

The Moth Eaten World-coverHere is the cover of my new chapbook put out by Finishing Line Press.  You can order a copy here

 

To entice you, here are some “glowing” words from two poets who have read 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, author of Bedside Manners, and The Orange Wire Problem.

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The Art of Losing

I highly recommend a book of poetry edited by Kevin Young called The Art of Losing: Poems of Grief and Healing.
The title is from Elizabeth Bishop’s poem One Art. I got a hardback version at a book closeouts website through Amazon (forgive me independent bookstore lovers) for about $8 + shipping.

I want to quote Kevin’s opening lines in his introduction as a way to bring you into wanting to also get the book.
“I have begun to believe in, and even preach, a poetry of necessity. This is a recognition not just of the necessity of poetry to our lives, but also the fact that necessity is what drives most of the poetry that matters, or the way that it matters.” And, “a poem must be willing to be unwilled, beckoned by need.”

And this book is filled with poems driven by need: elegies, remembrances, dedications, words that attempt to point towards the things that are often unspeakable, or seemingly feel that way.  I love the way I am drawn to think about other forms of art, painting and music, as I read different poems. I thought about Ad Reinhart and his seemingly monochromatic paintings in all black and all red. They beg us to be absorbed into them, by them. They seem to hover around those “almost unspeakable realities” and yet, we keep trying to find the words and images, sounds and visuals to express our ineffable lives.

The Art of Losing is a remarkable compilation of poets living and dead, from W.H. Auden, Emily Dickinson, Anne Sexton to Dean Young, Robert Hass, Lucille Clifton, Adam Zagajewski, just to name a few. And there are so many, many more.  For what greater mysteries are there than death, love and living.

As William Faulkner is quoted in the opening section called Reckoning:

Between grief and nothing, I will take grief.

Theodore Roethke says in the section, Recovery:

I learn by going where I have to go.

And finally, Philip Larkin opens the last section, Redemption with:

What will survive of us is love..