Suzanne Edison, MA, MFA

Poet • Educator

Suzanne’s Blog

Thank you for visiting my blog! I write on many topics and your comments are always welcome.

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The Healing Art of Writing

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A new anthology, The Healing Art of Writing, was published recently by the University of California Press, Medical Humanities division.  It contains essays, poems and creative non-fiction written by attendees at the Healing Art of Writing conference and workshop held in California in the summer of 2010. (Information on the 2012 workshop is not yet public but will be held July 8- July 14, at Dominican University of California).

I recommend this, not just because I have two poems in it, but because the breadth and depth of the writing is sure to reach a great many people.  I believe we need to keep articulating the feelings and thoughts we have about illness, healing, mortality, medicine, all the experiences we were never educated to express in order to expand our notions about what it is to be human in the 21st century, and beyond.  I’ll be reviewing specific pieces from this book in another blog.

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“Bloodwork” wins Honorable Mention

I was overjoyed to hear that a poem of mine won an honorable mention in a contest. While it would have been nice to win first or second place, the very fact of having a piece of poetry read and respected goes a long way in the heart and mind of a writer.  Poetry has such a small corner of the publishing world that finding readership is the proverbial hunting needles in haystack task. It is one thing to spend time writing poetry, arguably the hardest part, but another thing altogether to then search out places that might accept your work, read it, publish it.  So I am grateful to the unseen faces, to the unknown judges who decided that this poem was worth “mentioning” among 150 submissions.

In the larger context of writing about illness, caretaking and medicine, there is a growing appreciation of the role that the arts has in healing.  More on that and the new, wonderful anthology, The Healing Art of Writing, currently available, in my next blog.

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Off Meds! A few learnings…

It’s official. My daughter is off all meds. Labs, muscles, skin all look great.

In retrospect it’s been since spring of 2005 when she first showed symptoms. It was a slow decline and I aggressively sought help/diagnosis for over a year. Finally diagnosed and started on treatment in January of 2007. Many of you know our journey. Each family of a child with Juvenile Dermatomyositis and other chronic illnesses, has similarities and differences. We are all united by wanting our children to be well, to find better treatments, faster diagnosis, A CURE. I hope our story gives hope. I so desperately needed to know that kids did get through it when we first started.

The statistics were against us in the beginning. More than a year of untreated disease was not a good way to start.  There are reasons to ignore those numbers!! My child made it. At least she’s come this far. Every day is a gift.

Believe me there were dark days when I worried about everything. I felt inadequate, angry, helpless. I know you know what I’m talking about. We all have them. But we get through. With humor or faith, running marathons, or simply putting one foot in front of the other. Because we have to.

And then there are those moments of brightness. A smile from our child, an hour where they aren’t in pain, an IV started the first time vs. the 4th time, an astute remark or observation they make, a hug or kiss they give, or whatever it is that makes us realize that to LOVE is what we are here for. We need to celebrate them. Each of them. And, at the risk of sounding like the infinitely broken record that I am, each of us caretakers needs to have moments to care for ourselves. We can’t do it all alone. We do need others. Please, please do this for yourself, AND do it because you will be a better caretaker for your child too..

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Kids Make Art to Heal and Help-1st in a series

When my daughter was at her worst, overwhelmed by the mental, physical and emotional effects of many medications in addition to the pain and restrictions that her illness caused, she spent a lot of time making art.  Necessitated by the fact that she could not move around much, she found sedentary activities like knitting, beading and drawing, engaging and comforting.  At one point in her healing process we held a fundraiser to support research and a cure for her rare illness.  She made many beaded bracelets and necklaces to sell at the fundraiser (which was mostly a large concert event) and found that she sold out!  She discovered an entrepreneurial spirit and an ability to make a difference simultaneously.

I have found over the past few years that this is not such an unusual approach for kids with a life threatening or chronic illness, to take.  Spurred on by the need to “do something” to find cures for their illnesses, and by their parents support (and like-minded need), many children are finding creative means for healing and fundraising.

This is the first in a series of brief profiles of kids making art (with heart).  Kory is 10 years old now and has been struggling with the ups and downs of a rare autoimmune disease called Juvenile Myositis for 6 years. At her worst, she couldn’t walk, get up off the floor, brush her hair or teeth, or ride a bicycle. She had stopped playing with her older sister too.  She was tired and weak.

Kory lives in a sunny part of the US and loved to be outdoors. Because one of the known triggers of her illness is exposure to UV rays and this, along with the fact that the medications she’s on make her even more sun sensitive, she is not allowed to be in the direct sun. She needs to stay covered up and wear sunscreen when she is outdoors.  While there is treatment for her illness, and she is now able to ride a horse, a bike, run, play and wash clothes by hand, there is not yet a cure.  And Kory would very much like for there to be a cure. For herself and other children she has met with this same illness.

Kory paints, sketches, draws and doodles.  She has been inspired by other JM kids to sell her artwork.

Now she makes candles and photo holders to sell. She makes bookmarks too, and offers them in exchange for donations to Cure JM at local farmer’s markets. Her older sister also helps in this endeavor.  She wants to do more artwork and keep selling so she can contribute to the search for a cure.

When I asked her what the best thing about her project is she said, “it helps raise awareness and hope.” And when I asked in writing, what she wanted others to know about herself or this project, she wrote, “no matter how small the person or [the] project is, it counts !”  That was her exclamation point and I couldn’t have said it better myself.

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