Suzanne Edison, MA, MFA

Poet • Educator

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Guest Blogger at CAREGIFTED

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I have the honor of being a guest blogger at CAREGIFTED‘s website. CAREGIFTED is an organization that “grants respite to long-term family caregivers, and works to greaten public recognition of their gifts to society, as well as of their historically unprecedented numbers.”

CAREGIFTED was founded by Heather McHugh, a nationally known poet and teacher, and the recipient of a MacArthur Genius grant. Please read more about how this organization came into being at their website. Providing a week’s all paid vacation to long term care providers is simply a radical and unique approach to helping families of profoundly disabled or chronically ill children.

I will be alternating my blog posts every other month with Jeneva Burroughs Stone, also a long term caregiver and writer. She blogs and writes about disability at Busily Seeking 2.0 and is currently writing a memoir.

This month’s blog post (coming out soon) at CAREGIFTED, features an interview I did with Kim Poston Miller, a mother of two children living with Juvenile Arthritis and the author of the book Living with Juvenile Arthritis: A Parent’s Guide. I hope you will take some time to peruse all of these sites for information about parenting kids with long term illness and about respite opportunities for caretakers.

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Finding common ground: Writers & Parents of kids with chronic illness

For so many years having a child with a disability was a stigma. For some it was shameful, if not for the parents themselves, then often for other family members. Friends disappeared and if families were lucky, they met others like themselves or kept their “real” friends who made room in their hearts and minds for those of us, who may be considered, “other”.

I want to introduce you to three women who all parent a child, or children, living with a disability, and/or chronic illness.

Kim Poston Miller has two boys, both of whom struggle with Juvenile Arthritis. She has a terrifically informative website and has written a book for parents about how to not only survive but how to thrive, living with children with juvenile arthritis. This resource is not only useful for her book, Living with Juvenile Arthritis, a book for parents of kids with JA, but it is great for any parent who has a child with a rheumatic disease (Juvenile Myositis and Lupus for example) or other chronic illness.  She also provides resources for families and kids alike, on her site.

Jeneva Burroughs Stone is a gifted writer, essayist and poet. She blogs on two sites, Busily Seeking and Busily Seeking 2.0, about her life with her profoundly disabled son, typically developing daughter, husband and their lives, including their search and eventual finding of, her son’s diagnosis.  Jeneva also writes about larger social and political issues that effect healthcare and life with caretaking her son.  In her words about how receiving a diagnosis effected their family after 14 years of not knowing she says:

“…not only diagnosis created turbulence (I guess you need to ask yourself how you feel about it, or that becomes a topic of conversation because nobody really seems to know how to respond when you say, hey, I got a diagnosis for my kid after 14 years–we live in a casually therapeutic society), but also changing work situations for both my husband and myself, uncertainties about health insurance both as a result of transition and the question marks of ObamaCare, Robert’s first year of high school, starting a Medicaid waiver with overnight nursing for the first time–and that was just the fall.”

My newest acquaintance, one I’ve really only “met” via Facebook, is Elizabeth Aquino. (To be completely honest, I’ve not actually shaken hands or seen the other women face to face, but I have corresponded with them more extensively and have spoken on the phone with Kim.) Elizabeth’s website, a moon, worn as if it had been a shell, is also a wonderful mixture of excellent writing, disability issues and soul sustenance. She says, “I love poetry and discourse and gallows humor. I like to say that reading voraciously has been the only constant in my life. I am a fierce advocate for my daughter who has a severe seizure disorder of unknown origin, as well as for all special needs children. This is a place where poetry, politics, parenting, and disability intersect.”

I hope you will take time to read these women’s words. Leave them messages, it is one of the few ways caretakers of children with chronic health issues get social interaction.  I also hope reading them will expand your view of caretaking in the 21st century..

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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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Teaching Narrative Medicine

The whole field called Narrative Medicine is beginning to take off.  Or at least that is my perception since I am so closely tied to and interested in it.  There are masters programs, certificate programs, programs in medical humanities, and a host of literary/medical journals being published that reflect many aspects of health, illness, healing and both practitioners and patients responses, now. I have been published in a few of them and am grateful for their existence. (see publications under Resume).

Here, in Seattle, I have had the pleasure and honor of meeting and befriending a professor of nursing at the University of Washington School of Nursing, Josephine Ensign, who is pushing the boundaries of this genre and opening up nursing students eyes and ears to what narrative medicine means, in its many permutations.  She also writes a blog called Medical Margins,  in which she gives voice to the variety of writers in the field and offers her course’s approach and thoughts on the intersection of medicine and literature.  I highly recommend you read her blog.

Today, Josephine invited me and another author, Mary Oak, The Heart’s Oratorio to read and speak to her Narrative Medicine class.  I read my poem Teeter Totter, which the class had read before and we had a discussion about my intent and feelings of the poem along with some of the word choices and images, corrugated sadness, or leaving others up in the air, for example.  Someone wondered if I felt frustrated and helpless, as this was his impression from the poem. Since I’d written the poem a few years ago, I said I no longer felt frustrated by other’s lack of understanding and that helplessness comes with the territory of being a parent of a child with rare disease for which there is no cure.

I gave this class the same writing exercise I gave her previous class last November, though this group was much smaller and more intimate and seemingly more willing to share their own writing up front.  It was a lively discussion and I look forward to hearing or seeing some of their poems they began today.

Mary read from her book and I was struck by wondering how much her writing had changed what she felt or thought about her medical experiences or about writing in general.  She hoped, as I do, that the book offered hope to those in similar situations.  We both feel that telling the truth about our experiences leads to less isolation on the part of someone suffering other illnesses and offers them glimpses into how others have dealt with many of the same issues.

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