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.

This past week in my Writing as a “Righting” Journey group, I gave an assignment that incorporates some of the work I’ve been reading about emotional balance and the brain and my close reading of Jane Hirshfield’s poem Between the Material World and the World of Feeling, below.

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

Continuing my trajectory about writing as a “righting” journey and the brain, I came across an article by Judy Willis, neuroscientist and writing teacher/consultant in education.  Though she is talking about optimal parameters for learning, I am convinced that these same parameters work in favor of writing and emotional balance.

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.

I have been teaching a workshop called Writing as a “Righting” Journey for parents of children with chronic illness. It is my belief that writing helps us find ways to negotiate the roller coaster of emotions when our children are ill. Somehow, writing mediates our feelings and we may in fact be able to think more clearly after writing about something that is upsetting to us. While I have been convinced of this for myself, and there are legions of others who feel this way, I have become curious if anyone is actually studying this phenomenon scientifically.

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.

Just after writing my last post I was reading the August 2, 2010 issue of the New Yorker magazine and came across a wonderful article by Dr. Atul Gawande.  It is a far ranging piece about the concerns and costs of end of life care, about the importance and difficulty doctors have in discussing with patients what they want their lives to be like as they struggle with end of life, healthcare, and about the patient and their caretaker’s needs around this issue.

I won’t repeat in detail the complexities he describes but I do want to talk again about the importance of words.

Dr. Gawande found that Aetna Insurance had done a remarkable study comparing the costs of hospice care to ‘do everything possible in the hospital ‘ care with dying patients. They found that not only were costs lower for patients in hospice but “these patients suffered less, were physically more capable, and were better able, for a longer period, to interact with others. Moreover, six months after the patients died their family members were much less likely to experience persistent major depression.  In other words, people who had substantive discussions with their doctor about their end-of-life preferences were far more likely to die at peace and in control of their situation, and to spare their family anguish.” (my emphasis)

These discussions are never easy. Especially for doctors who are trained to do everything to intervene and are actually paid for doing rather than, not doing, something medically.  (That is another discussion.) But Dr. Gawande went on to interview “Dr. Susan Block, a palliative care specialist, who is a recognized pioneer in training doctors and others in managing end-of-life issues with patients and their families.”

In her words. “One basic mistake is conceptual. For doctors, the primary purpose of a discussion about terminal illness is to determine what people want—whether they want chemo or not, whether they want to be resuscitated or not, whether they want hospice or not. They focus on laying out the facts and the options. But that’s a mistake.”

“A large part of the task is helping people negotiate the overwhelming anxiety—anxiety about death, anxiety about suffering, anxiety about loved ones, anxiety about finances,” she explained. “There are many worries and real terrors.” Gawande again, “No one conversation can address them all. Arriving at an acceptance of one’s mortality and a clear understanding of the limits and the possibilities of medicine is a process, not an epiphany.”

“There is no single way to take people with terminal illness through the process, but, according to Block, there are some rules. You sit down. You make time. You’re not determining whether they want treatment X versus Y. You’re trying to learn what’s most important to them under the circumstances—so that you can provide information and advice on the approach that gives them the best chance of achieving it. This requires as much listening as talking. If you are talking more than half of the time, Block says, you’re talking too much.” (again, my emphasis)

And then Gawande says,  “The words you use matter.” While this article focuses mainly on the patient it also touches on the caretakers of the terminally ill or dying person. Not only is the discussion of what people want at the end of life relevant to the patient, but the talking, and listening that family members do also helps them come to terms with the patient’s illness and wishes and in the long run, decreases their sense of guilt and depression after their loved one has died.

Being the mother of a child with a chronic illness, my work and observations are often geared towards caretakers now.  And it is always confirming to me to see that words matter, no matter which side of the equation you are on.

I had the honor of speaking to and leading a group of parents whose kids have chronic illness, mostly Juvenile Rheumatoid Arthritis (JRA), this past weekend.  It was at a Family Camp put on by the Pacific Northwest Arthritis Foundation. Though my daughter has a different rheumatic-like disease, my family attended it 3 years ago when our daughter was very ill and really needed to be with other kids like her. My husband and I found a lot of support from other parents but also from one or two terrific speakers and group leaders.