Suzanne Edison, MA, MFA

Poet • Educator

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Pain Talk

The Wong-Baker FACES scale has been in existence since 1983.   Research was conducted on what sort of scales children and adolescents preferred and this one, with faces, won out.  And while I’m sure it has helped many a physician to understand the levels of what children may be feeling at any given moment in their office, it also feels inadequate to the varieties of pain they may experience (and we parents, observe).

In my own experience as a the mother of a child with a rare autoimmune disease that effected her muscles and skin and required years of hospital infusions, injections of chemotherapy drugs and several other medicines, including steroids, and as a former mental health counselor, I have first hand knowledge of the complicated nature of “pain.”  In addition, I have spoken to, and worked with many parents over the past 15 years who also have children with chronic physical and mental illnesses and it has become apparent to me that the pain scales used in both adult and children’s medical care just scratch the surface of realities.

In this light I have written several poems about pain and our bodies. One of them was recently published in HEAL, a medical humanities journal out of Florida State University. My poem, “Scaling Pain” is among other essays, photos, visual art and poems.

In my chapbook, The Body Lives Its Undoing, I also have a poem, “Pain, On a Scale of 1-10” first published in SWWIM Every Day online, that looks at a variety of painful experiences, including psychic and existential ones.

Especially now, in the year(s) of COVID-19, pain comes in many forms. I hope we can continue to push our knowledge forward of the relationships between mental, spiritual, and physical health. And though peace (peace of mind and body) may not be the goal for everyone, this quote from Pema Chodron, a Buddhist teacher, from her book, When Things Fall Apart:Heart Advice for Difficult Times, helps me a lot when I am in the thick of pain.

“When we are training in the art of peace, we are not given any promises that, because of our noble intentions, everything will be okay.  In fact, there are no promises of fruition at all.  Instead, we are encouraged to simply look deeply at joy and sorrow, at laughing and crying, at hoping and fearing, at all that lives and dies.  We learn that what truly heals is gratitude and tenderness.”

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Resources for Writing, Illness, Grief, Loss, & Healing

I have been accumulating books and articles that might help people who have come to my workshop, Writing as a Righting Journey and also to my class at Hugo House, The Words to Say It.

In my teaching I bring in many other poems, stories, (fiction and non-fiction) and essays that are too numerous to mention here.

Please see this document, on the Resources page. There will be some duplication from the Resource listing of books, but there is also more related to writing in the document. And More Resources.

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Healing for Caregivers

Recently, I re-read an article that Catherine St. Louis wrote in The New York Times in 2014. She presented research about coping techniques for parent caregivers of children with chronic health needs. This paragraph stood out for me.

“All parents endure stress, but studies show that parents of children with developmental disabilities, like autism, experience depression and anxiety far more often. Struggling to obtain crucial support services, the financial strain of paying for various therapies, the relentless worry over everything from wandering to the future — all of it can be overwhelming.”

The research focused on two coping approaches. “The first group practiced meditation, breathing exercises, and qigong practices to hone mental focus. The second received instructions on curbing negative thoughts, practicing gratitude and reclaiming an aspect of adult life. Both groups were led by specially trained mentors, themselves the parents of special-needs children.”

Not surprisingly, both groups reported reductions in stress and anxiety and even “how to redirect their anxiety into positive action.” The group given the meditation techniques seemed to report greater reductions in anxiety.

When my child was diagnosed with an autoimmune disorder I also experienced high levels of stress, anxiety, sleep deprivation and fear. It was then that I refocused my writing journey to include all of what was happening in my life. I found great relief and new wells of creative energy. I became a better advocate for my daughter too.

I have had similar reports from parents in my Writing as a Righting Journey workshop where we use writing and body awareness to help reduce anxiety and find ways to channel it into creative, and more productive thinking and action.

Next week I’ll be presenting my work at an international health humanities workshop in Spain and in November, I’ll share some insights of my work at a Mayo Clinic conference in Phoenix, Humanities in Medicine. Stay tuned.

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Resources

People frequently want to know where I’ve gotten my ideas. They are a conglomeration of personal and professional experience along with a lot of reading and experimentation.

Here is a list of some of my resources and Evaluation Forms. Here is another approach to evaluate Writing as a Righting Journey workshop.