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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Obamacare is really Care for All

I can’t begin to describe my shock and delight when I came down to breakfast yesterday and my husband had the radio tuned to a discussion about the Supreme Court’s ruling on the Affordable Care Act. It was 8 am our time and the ruling had just been revealed.

Yes, we have a child with a rare, autoimmune disease for which there is no cure, Juvenile Myositis (JM). Thankfully, she is in remission after 5 years on medicines for which, another yes, we were covered by my husband’s health insurance. ( Though it has become more expensive and covers less, we are some of the lucky few.)  But that doesn’t mean I rest easy at night. Because there is not a cure for her illness, we live with the fact that it could reoccur at any time. It is a big unknown, a potential time bomb.

As if I needed another reminder of the potential harm of JM, a 10 year old boy lost his battle with it just this week.

A good friend whose daughter shares this disease put it this way, “To me, the health care law means – at least – the POSSIBILITY that throughout her life, her decisions about schooling, employment, and moving between states may be based on her dreams and desires – not on what might allow her to maintain decent health coverage. She deserves these basic freedoms as much as any chronic-illness-free kid.”

While this law will continue to be a hot-button political issue, I think Dr. Atul Gawande has given a thoughful  analysis of the reasons the Affordable Care Act (ACA) is needed, why social policy changes such as this are such contentious issues from a historical perspective, and the moral reasons for it’s necessity.

I know politicians will use this law to try and gain power and drive wedges between us, but as Dr. Gawande points out, what we have in common, “We are all born frail and mortal—and, over the course of our lives, we all need health care”, should unite us.

 

 

 

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The Examined Life, Ars Medica and other projects

I am pleased to say that my poem Bloodwork was published in The Examined Life: A Literary Journal of the University of Iowa Carver College of Medicine in their Spring 2012 issue.  This school of medicine also holds a yearly conference by the same name, The Examined Life, and is one of a handful of schools involved in Narrative Medicine and that offers courses in Medical Humanities.  I recommend checking out the school/conference and this volume.

I also have a poem forthcoming in the next issue of Ars Medica.  Stay tuned for that wonderful journal from Toronto, Canada.  While their website is not really up to date, I would suggest asking for their most recent journal issues in a personal email to them.  And while you’re at it, ask them to update their website!

Lastly, I wanted to say I am working on a new set of poems about parents whose children are living with a chronic illness.  I was awarded another grant from the City of Seattle Arts and Cultural Affairs program to pursue this project. I am interviewing parents whose kids have Sickle Cell disease, Juvenile Arthritis, Muscular Dystrophy and one or two other illnesses.  They come from a variety of backgrounds and I am trying to capture both the unique specifics and overlapping issues, common in all of their, and my, experiences.

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Writing as a Righting Journey gets another nod

In late February 2012 I was happily informed that one of the many grants I have been seeking was given approval.  The Seattle Office of Arts and Cultural Affairs has granted me $4000 to pursue another project with poetry and parents of kids with chronic illness. I will be interviewing parents whose children live with a chronic illnesses and then writing a series of poems based on our discussions. I will then publish a small book of those poems and blow up one or two of them into broadsides. (Broadsides are poems enlarged into picture size and then framed). Several copies of the book and broadsides will be left and hung, respectively, in the clinics where these families/children are treated.  I will also do a series of free public readings and discussions of the work.

Look for further information on the readings etc.

If you, or anyone you know is interested in being interviewed, please contact me.  I am looking for a range of families with socio-economic diversity and a range of illnesses too.

 

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2nd Writing as a Righting Journey

 

Writing as a “Righting” Journey

 

THROUGH WRITING WE CAN:

Ø    Explore the ways illness effects our lives

Ø    Find courage to go deeper, discovering new meaning or affirming values we already hold

Ø    Have an opportunity to share our lives with others and find community

 

GOALS:

Ø    Provide parents structure for giving voice to their experiences of having a child living with a chronic illness,  e.g. changes in emotional, physical and social life

Ø    Provide immediate and on-going options for writing on one’s own and in a group

Ø    Provide books, readings, (fiction, non-fiction, poetry) that speak to a variety of issues surrounding illness, healing and caretaking

 

WHY:

“One of the more common challenges parents face when managing the care of their chronically ill children is that they simply may not have the ability to cope. Generally, the research shows that when moms are depressed, adherence [to the child’s medical needs..] will go down…”

 

Research also shows that emotions are centered and experienced by the part of the brain known as the amygdala. This is part of the early brain, the limbic system. Trauma and highly charged emotions can keep us centered in that area of the brain and not allow us to use our higher centers of thinking, the frontal cortex. In order to assess and move on from being stuck in feeling, to thinking about our feelings and then move into action or decision-making, we need to connect feelings to thinking, the amygdala needs connection to the frontal cortex.  Judy Willis, a neuroscientist and writing teacher has shown that writing can do just that.

 

From both personal experience and observation, I have seen that writing can ameliorate feelings of depression, thereby increasing a parent’s ability to, cope with daily life and care for, their child.  Writing in a group can also allow one to realize they are not alone and gain support for their struggles.

 

One participant of the first WARJ group had this to say when asked what she got out of it at the end of our 6 month sessions:

“…feeling understood and not alone…[it was]…much better than a support group for me as instead of commiserating we were putting our energy and feelings into art that heals and allows for release as well as a powerful way to share with others.”

 

WHO & WHEN:

Ø    This group will be open to parents of children with a chronic illness. Any family dealing with Rheumatic diseases (JM, JRA), Diabetes, other Endocrine diseases, Gastroenterological diseases, Cerebral Palsy, Cystic Fibrosis, Sickle Cell Anemia are welcome to join.

Ø    We will meet 5-6 times over a 5 month period.

Ø    Each session will last 1.5 hours in Seattle, Washington

 

The workshop is led by Suzanne Edison, MA. She is a psychotherapist, poet and mother of a child with Juvenile Myositis. She is also the Family Support Director for the Cure JM Foundation.  She has led workshops and given presentations on the Effects of Chronic Illness on Families and Coping with Chronic Illness to parents and medical professionals.  She also was awarded grants to write and publish a chapbook of poems based on her journey with her child. A recent poem, Bloodwork, was awarded an honorable mention in the Charles Prize for Poetry contest.  For more information please see her website, www.seedison.com.


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