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.

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.

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.

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.

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.

I know these feelings are normal. But I hate the anxiety. Every time we reduce her medications, every little step towards remission, is a double-edged sword, a kind of “damned if you do, damned if you don’t” feeling. THIS IS NOT A WAY TO LIVE. And that word, LIVE, is the operative one here. What can I do to keep alive, I ask myself, and do I really have to put myself through this? How can I turn that bubbling stew in my stomach into something nourishing?

Here is what I have come to think. I can’t stop the feelings. What I can do is choose how to react to them. I can pretend to ignore them. OK, that is folly, they come back regardless; I grind my teeth more at night or get an upset stomach. Some worry prompts me to do research or ask questions, but this heart-pumping adrenaline rush non-stop mental agitation of fear mostly thwarts productive thinking.  Like a hamster on its wheel, I waste valuable time and energy engaging in worry.

I am learning to do several other things instead. Now I say to myself, “OK, there you are again, anxiety. I feel you in my stomach, turning my deep breaths into shallow sips. I will now focus on deeper breaths. I will write down swear words and everything I fear—which often comes down to how little control I have over many things, and the fear of losing my child altogether—and then find other, kinder words to use towards myself, towards my anxiety.” For ultimately, it is there to warn me not to become complacent. I also need to say to myself, “ let’s look at the facts right now.”

When I do that, when I write down the feelings AND the facts too, I find it is becoming an easier and more routine way for me to deal with my fears. I scribble on whatever piece of paper is handy, or I journal it at length and sometimes I even turn those scribbles into poems. Here is a poem, Bloodwork, I’ve been writing and revising for the last year. It will be published this spring by UCSF Press (in a slightly different version) in an anthology from a workshop called The Healing Art of Writing 2010.

I continue to look for writing that reminds me I am not alone, that if others can do it, I too can put my feelings into words. When I do, I seem able to hold a little more tension or release it, and I can move on.

I asked the participants to focus their attention on a time when they were worried about their child’s health. Then I asked them to complete a number of sentences that all began with “When I am worried about my child’s health I feel…or I am…” I gave them a list of things to think about: what color they felt, if they were the weather what would it be, some kind of food, a taste, smell, animal or sound of an animal, etc.  Then I asked them to do the same thing for when they feel grounded.

Next, I asked them to think of something that connects one thing to another.  I wanted them to write one sentence about when they are worried, write about traveling on whatever it was that connects them from one place to another (for one it was an airplane, for another a path through a bamboo grove) and then write a sentence that corresponds to that aspect of worry but is from the grounded side of their list.

I was looking for a way to create a pathway from worry to groundedness using language. I was also thinking about the poem below and how Jane Hirshfield (also her mentors, Rilke and Cavafy) uses an object to embody her feelings. In this poem, she imagines or wishes for, a particular chair, bentwood, and a very specific vase, blue-green, that could hold her and a range of feelings in “an equally tender balance.” And so finally I asked the writers to think of an object in their house they dearly loved and to write descriptively about that object.

This exercise seemed to grab the participants at different junctures. One found it easy to write about certain worries as she compared it to various other senses, objects or experiences while another took awhile to find an object in her house that she cared about. But when she thought about her piano, that had belonged to her grandmother, a whole new ‘aha’ moment opened for her.

Finally, we all read this poem together, aloud. We spent time looking for the feeling words, the words of materia and the connectors or vessels that held things and the immateria of feelings.  The poem has become for me another vessel.  One I return to again and again, so I may pour myself into it and have it echo back.

Between The Material World And The World Of Feeling

Between the material world and the world of feeling there must be a
border—on one side, the person grieves and the cells of the body grieve also;
the molecules also; the atoms. Of this there are many proofs. On the other,
the iron will of the earth goes on. The torture-broken femur continues to
heal even in the last hour, perhaps beyond; the wool coat left behind does
not mourn the loss of its master. And yet Cavafy wrote, “In me now
everything is turned into feeling—furniture, streets.” And Saba found in
a bleating goat his own and all beings’ sorrow, and this morning the voice
of that long-dead goat—which is only, after all, a few black-inked words—
cries and cries in my ears. Rilke, too, believed the object longs to awaken in
us. But I long for the calm acceptance of a bentwood chair and envy the
blue-green curve of a vase’s shoulder, which holds whatever is placed
within it—the living flower or the dead—with an equally tender balance,
and knows no difference between them.

–Jane Hirshfield   from After

In review, the amygdala is the emotion center of the brain and the prefrontal cortex is where we can think about our emotions and make choices about how to react.  When we write, we are using our brain to do a great many tasks at once.  Here is Ms. Willis on the importance of writing.

“Consider all of the important ways that writing supports the development of higher-process thinking: conceptual thinking; transfer of knowledge; judgment; critical analysis; induction; deduction; prior-knowledge evaluation (not just activation) for prediction; delay of immediate gratification for long-term goals; recognition of relationships for symbolic conceptualization; evaluation of emotions, including recognizing and analyzing response choices; (my emphasis) and the ability to recognize and activate information stored in memory circuits throughout the brain’s cerebral cortex that are relevant to evaluating and responding to new information or for producing new creative insights—whether academic, artistic, physical, emotional, or social.”

If I had wanted any more validation than this, I couldn’t have asked for a better elucidation.

What is new in my understanding though is why writing, in a supportive emotional atmosphere, can also be healing. From my personal experiences and observations of others, I have written about why I think groups can be very important for healing, (see When Words Matter).  Here, Ms. Willis talks about learning in supportive atmospheres, (when we are writing about difficult experiences, we are also trying to “learn” how to deal with those feelings), and defines a “positive brain state”.

“The brain evolved to better protect the well-being of its owner and species. One way that this is important for the classroom is that effort and attention are limited commodities the brain parses out to the actions it predicts will be successful in protection or pleasure.

So, for example, when students participate in engaging learning activities in well-designed, supportive, cooperative groups, there is a positive emotional response in the brain. The pleasure of learning with one’s peers increases the brain’s release of dopamine, a neurotransmitter that increases pleasure, motivation, perseverance through challenges, and resilience to setbacks.

In addition, there is a beneficial response in the amygdala. The amygdala is a switching station (there’s one on each side of the brain) in the brain’s emotional-monitoring limbic system that determines if input will go to the reflective, higher cognitive brain (the prefrontal cortex) or down to the reactive, involuntary brain.

The brain scans of subjects learning in supportive and emotionally pleasurable situations show facilitated passage of information through the amygdala up to the higher cognitive brain, so learning associated with positive emotion is retained longer. Stress, however, determines if the intake is sent to that lower reactive brain.”

It may be that not only talking about stressful and painful emotional events, like how to deal with a chronically ill child, in a supportive group atmosphere unlocks dopamine (a lot of research has been done on the beneficial effects of all the arts on heart health) thereby reducing stress and providing people with more capacity to think, persevere and become resilient, but adding the activity of writing about those events and sharing pieces of that work with others, might heighten all of those beneficial effects.

It is time we integrated more art and writing programs into all of our medical care.

So I Googled, writing and the brain and presto, found an article on this subject. Dr. Matthew Lieberman, a neuroscientist at UCLA has been studying this very question.

OK, emotions are seated in the amygdala, that information is fairly well known.  Rational thinking or the ability to modulate one’s feelings seems to lie in the prefrontal cortex (and this takes well into our 20′s to really develop, so we need to give teens a break), yup, that is well studied too.  But the thing that made me sit up and take note was that “scientists suggest that the less vivid and descriptive the piece, the better.” Hence, bad poetry?

Apparently, if you write about something in a “detached” sort of way, rather than really going into detail, the amygdala calms down and the prefrontal cortex lights up. But if you write in more detail, it seems to make one relive the painful or negative experience.

Hmm, now that is not what I expected to hear, but it does make some sense.  I have written my worst poetry in the middle of crisis times. But I have felt better getting it out my body and onto paper.

Yet as a poet, I also know enough to let those words sit for awhile, maybe even a year before I go back to them and revise. So maybe bad poetry and lyrics are being published “right out of the box” as it were.  The heart/brain box that is.  And maybe when we go back to revise our work, whether we were detached or overwrought to begin with, we add more detail and metaphor or hone and strip the narrative, the descriptions or style, so the flood of emotions we felt initially becomes modulated too. The poem takes on a life of its own, it takes a journey that may have a different ending from its origin.

The reader is then able to sense or respond to the piece without being swamped by the load of emotion that prompted the piece in the first place.

And I may now have to encourage my students to be more “dull” in their approaches to writing, so they will feel better. Even if no one reads their work.