Synapses are the spaces between brain cells. But more importantly, they are the channels of communication between cells that make possible all brain functions, including perception, memory, emotion and thinking.

It’s practically a truism to say the synapses underlie personality since synapses underlie everything the brain does. More important yet: synapses are the sites of storage of information, including information that is encoded by our genes and also by our experiences — our memories.

When it comes to personality, genes and experience are just two ways of doing the same thing — wiring synapses. That’s why I say, To the extent that we are a product of our genes and experiences, we are our synapses.

This doesn’t mean that the essence of who you are is encoded at a particular synapse. It means that your self is a very complex pattern of synaptic connectivity in your brain.

In thinking about how emotion, writing and the brain come together, this man has pushed my understanding along quite a ways.  If this area interests you, I highly recommend his other book, The Emotional Brain too.

Writing and talking about our children with chronic illness is a difficult topic for many of us. For too long this topic was whispered about, pity and fear being the prevailing feelings of those who have typically developing and healthy kids.  But those of us who have children living with chronic and/or life threatening illnesses are learning to speak out about our lives and experiences.  And I for one, think it is healthy and important to expand the conversation about not only “acceptable” topics of discussion and art but also about the enormous role that health and illness play in our economy and society at large. If we can’t speak, listen and discuss these issues, we can’t affect change in them either.

Since this is a big topic, let me start small and personal. Here is an article by Maria Kefalas about her life with a terminally ill child, one of three children.  She has profound insights about mothering in general.  These are some of the frequently cited “silver linings” that many of us come to learn when we have a child with an ongoing health challenge and is an important piece of the dialogue between all families, not just ones with special needs kids.

Emily Rapp, whose son Ronan recently died from Tay-Sachs disease, has written extensively about her journey with her son. Most recently she wrote an article about writing about grief, pain and loss itself. As a writer, she has had to negotiate that line between raw, undigested feelings, catharsis and transforming feelings into art, again, making the case that we need to not only express and channel these feelings, but in so doing, we enlarge society’s understanding of the human condition.

This past week I read some of my poems to an unfamiliar audience in a local library reading series. These included poems about my journey, and others I’ve met and interviewed who are parenting a child with a chronic illness.  The room was silent, not even an “ahh”, or a sigh could be heard during some of the usually more painful passages.  Laughter though, was expressed in “appropriate” moments.  I was struck by the difference in this audience from others.  Were they more shy?  More embarrassed, taken by surprise?  Hard to know.  I know the material is powerful, provocative and that I read it clearly and straight forwardly. A comment by an unknown audience member afterward, who had a hard time expressing his feelings but wanted to let me know he “felt” for me, made me think that when the material is painful, most people don’t know how to respond.  This was not true of my audience at a local children’s hospital or even among a large group of nursing students.  But those audiences are more “schooled” in illness and the emotional effects of it on families.

In the book Writing and Healing: Toward an Informed Practice,  essays about the need for, and success of, integrating personal narratives about traumatic experiences in creative writing programs are explored. I find this heartening, it is a way to build emotional intelligence and muscles in our future readers and listeners.  Here is a quick outline of the book:

“We expect poets to craft art from suffering, but do we allow ourselves or our students to go this route? In this new book Charles Anderson and Marian MacCurdy compile 15 essays written by and for writing teachers and others who have experienced or would like to encourage writing and healing in a variety of settings, classrooms, substance-abuse treatment centers, AIDS support groups, and elsewhere throughout our communities.The essays explore particular writing practices and present theories that support writing as a way to approach and understand difficult situations, such as grief, death, and illness.

The editors recognize and address the conflicts inherent in promoting expressive writing and argue convincingly for the inclusion of personal and political concerns in the writing classroom or other settings. Writing and Healing provides a unique occasion for teachers, scholars, and other professionals to begin an open, serious conversation about the healing power of writing.”

A friend, well known poet and MacArthur Fellow, Heather McHugh, recently started an organization called Caregifted, to give long term caregivers a respite from their ongoing, life path of caring for chronically ill or special needs children.  Her understanding about the societal impact of special needs children and their caregivers is acute and based on a relationship she has with a godson and his special needs child.  Her take on the need for compassion and understanding is this: “Compassion? useless without practicum.”

But how do we move towards action if our capacity for feeling and thinking about these issues is stunted? How do we begin to talk about the issues if we have not read or listened to others discussing the impacts of life threatening or chronic illness on families?  It is to these points that I say, we can’t. We must write and speak out. We must learn to tell our stories, to imbue the personal narrative with a larger political and social perspective. This is one reason why I teach a writing workshop for parents who have a child living with ongoing health needs.

We also know that families of a special needs child face greater economic challenges. If they have insurance, they are lucky. If not, the rest of society supports them with emergency room visits and probably less compliance with health routines and further degradation of health, which in turn puts more burden on a taxed health system. Then if the mother or primary caretaker is depressed or isolated because of her caretaking role, often times adherence to health needs of the child can be unseen or ignored, in turn, leading to poorer outcomes and the need for intervention for the child. It becomes a downward spiral.

We must understand that by writing, reading, listening to or seeing stories about ALL the ramifications of health and health needs, about trauma and its psychological, social and economic impacts, can enlarge our capacities as humans to care.  As Buddhist monk, Pema Chodron believes:  [...when] 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.”  And then hopefully, learning to bear these feelings helps us to broaden our actions.

According to neuroscience, our emotional center, the instinctual part of our brain that is geared towards flight or fight is the amygdala.  When we have a strong emotional reaction, like fear or a traumatic experience, e.g. a child’s death or ongoing illness, or as a soldier fighting a war, then our brains (and bodies) lay down memories.  Most of these memories are not conscious.  Here is what neuroscientist Joseph LeDoux says in a discussion with John Brockman:

“The brain can produce emotional responses in us that have very little to do with what we think we’re dealing with or talking about or thinking about at the time. In other words, emotional reactions can be elicited independent of our conscious thought processes. For example, we’ve found pathways that take information into the amygdala without first going through the neocortex, which is where you need to process it in order to figure out exactly what it is and be conscious of it. So, emotions can be and, in fact, probably are mostly processed at an unconscious level. We become conscious and aware of all this after the fact.”

How do we become conscious of our emotions?  There are many ways but one powerful way is writing about  our experiences that are attached to those emotions.  This is what many people do when they “journal”. But what if our writing is simply re-enacting the original trauma or incident and so rather than being able to move forward, we are stuck in a loop. It may feel cathartic to write but it may not actually be engaging our cortex and allowing us to mediate our experience.   Might there be techniques and ways of writing that would in fact begin to make the cortex take on a role and help us with overwhelming feelings?

Neuroscientist and now writing educator, Judy Willis says:

“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.”

So, might our writing about traumatic experiences be best done in a supportive group?  And might we structure writing exercises that help people get beyond painful experiences by giving them ways to reflect in writing, by helping them focus on the here and now of their bodily experiences, and writing about that? Or by asking them to use their imaginations and conceive of themselves as an animal or landscape and write about that image?  In fact, just helping them find images, metaphors, similes, the language  and structures of creative writing may also engage the pathways to the cortex that seem so vital for mediating emotional experience, and engaging our thinking.

I believe this is possible.  Others have come to these same conclusions and there are writing manuals geared to help individuals move through emotional whirlwinds and find balance in their lives.  I also teach a writing workshop for parents who have children with ongoing health issues.  This workshop brings individuals into a supportive atmosphere where I provide structured writing time and time for sharing (if people want to).  One new participant exclaimed after her first session that it felt so “luxurious” to be writing this way vs. just keeping records of all the behaviors and events in her child’s life.

I no longer believe (if I ever did) that it is a luxury to find time to write. I firmly believe it is a way to keep my sanity and provide me with much needed inner strength and aliveness, to keep going as a caretaker of a special needs child.  I believe writing can help us think and feel about our lives, allowing us to gain perspective and be able to reflect on what we can do as parents and advocates for our children and what is out of our control.

In honor of all this. In honor of the cycles of creation and destruction to which we are all subject. In deference to all the writers, artists, poets, great orators, quiet spiritualists who speak of our place in the Great Cycles of Creation. In all the forms we know through, and by, I offer a poem.  (Originally published as Remains in Seattle Woman magazine, 2004)

What Remains

Burrowing
into mother’s pillow

I inhale
a curry of wet leaves, dried

roses, an absence,
like chilies lingering,

the tongue
no longer afire.

I dream of gulls
piercing a crushed silk sea,

a litter of urchins
lashed wave upon wave,

their empty bodies
crumbs

the beach holds
rising.

Awake, like a mouse
in hawk’s sight

my sand papered skin
longs for cover—a tapestry

jacquared with moss
and flame leaves—

for rain to fill my fluted
bones, picked clean.

Does the title of this blog post sound familiar?  Most parents feel this way, most of the time, but it is especially true if you have a child with special needs, ongoing health issues or some combination of these. Perhaps you have more than one child, or more than one who has special needs. Your days are often filled with just getting them dressed, fed, to school, or doctor’s appointments, home again, fed, to bed. On top of that, with ongoing health issues often comes a battery of medicines (this is one of the dozen my child was on for 4.5 years)

that need to be kept track of, administered with or without food, multiple times a day.  There are refills that need to be ordered, notes to be kept about daily behaviors, experiences that a doctor  might need to know about (that, you say is the writing you do) or multiple kids schedules to keep track of. This is just a slice of what a day might include. And at the end of the day you fall into bed yourself, and maybe, sleep through the night. Then, get up and do it all again.

2. The 5-minute Fix

I have lived this. But without being able to write I would never have made it through the more than 5 years I spent caring for my child when she was ill.  (She is in remission now, but with an autoimmune disease, one never knows if it will return.)

Writing saved me and helped me deal with the overwhelming emotions that came with care for my child and not knowing if or when she might attain remission. As a result of my experiences I now teach a writing workshop for parents who have kids with a chronic illness.

I begin my workshop with a 5 minute writing exercise. I think everyone can carve out 5 minutes a day to do this and it may just help you cope with the rest of your day. Or help you sleep at night. Of course, you are welcome to go over the allotted 5 minutes, but not at first.

3. The Exercise

Write down 3 words that come to you from your day. These words can be about your day with your child(ren) or in general. They can be any words (try not to censor yourself).

Set the timer for 5 minutes.

Then, write for 5 minutes using these 3 words as often as possible. You can write full sentences or fragments of sentences. You can write a paragraph or a poem. Try not to think about the form but let the words come out. If you get stuck for words in that 5 minutes, just keep writing the same words over and over until something else emerges.

Stop when the timer goes off.  Read it to yourself. Put it away.  Repeat this exercise the next day. And again as often as you can, but limit it to 5 minutes at a time.

4. Now What? The Intermediate Approach

After you’ve done this exercise 5 times, the next time you are about to do it, sit for a few seconds before setting the timer, close your eyes and check in with yourself. Notice your breathing. Notice where your body feels tight and relaxed. Notice your jaw, your neck ,your abdomen, etc. Take a mental inventory.

Then do the writing exercise.  After the timer goes off, again close your eyes and go through this same internal checklist. Notice any changes. Open your eyes and look at what you’ve written. Jot down anything you notice from before and after the exercise.

Repeat as many times as you wish.  See if this little time out changes anything for you, helps you think better, feel calmer, understand something in a different way.  If nothing seems different that is OK. There is no right or wrong here, just this simple practice. Let me know what you think.

I am honored to be asked and they have recently posted Teeter Totter, a poem I wrote a few months after my daughter was diagnosed with Juvenile Myositis and was exhibiting all the classic Cushingnoid signs (moon face, bloating, irritability to name a few) due to heavy doses of corticosteroids.

I think the mission and vision of chpcc dovetail with my sense of what’s needed for families who have children with serious health issues.  Check them out.

Mission: Listen to, partner with, and work together for children with serious illnesses and all those who care for them.

Vision: We believe that all children with life-threatening conditions should have access to the care and emotional support they need to live life as fully as possible.

I will reiterate my basic messages here.

1) When children are sick, the whole family is affected.

2) Parents go through many stages of grief and loss, similar to stages of death and dying, on their journey with an ill child.
3) Using the arts, in this case writing, as a form of healing allows us to both feel our experience and learn to think without denying those feelings. The act of creation is both a way to re-energize our “wellsprings” and an opportunity to make sense and/or meaning out of our experiences.                                          

Also, I didn’t get a chance to completely make a pitch for my writing workshop at Seattle Children’s Hospital, called Writing as a Righting Journey, so I want to do that here.  This workshop is open to any parent with a child living with ongoing health issues. You do not have to be a writer, no experience needed. It is free. Please contact me for more information.

And if you want to read more of the poems that have come from my interviews/conversations with parents, please go to the online store here, to purchase a copy of What Cannot Be Swallowed.   Tune in on Wednesday, Jan. 30th to KUOW between 2-3 pm to hear 2 of these poems.

I started the reading with a poem I felt fairly confident about, Only Serious Applicants Need Apply.  I can’t post the entire poem yet as I’m hoping it will be published elsewhere first, but here are a few lines–  In the club you never wanted to join / is a job you didn’t apply for, your qualifications dubious. / Requirements include multiple personality transformations:–

I tried to weave in stories about the parents that I interviewed, and their child’s illness, between the poems. The audience consisted of 1/3 staff from the clinic and 2/3 friends of mine from various parts of my life. Two medical students left half way through the reading. Did they hate it?  Probably they needed to do some doctoring but no one told me.  I just went on.

At the end of the reading I asked for questions or comments.  Some very thoughtful questions ensued which made me aware that they were listening closely. Someone asked about my use of nature images in relation to the painful issues of illness and looming death of children.

Voices stick like pollen. / A wasp rasps its tongue on fence post, / turning wood bits and spit into paper hive / I transmute words, hearing again / what cannot be swallowed. 

          —from The North Wind

I had not thought this out exactly but I realized that the natural world is where I always go to help myself think through confusion or emotional upset. When my child was very ill and we didn’t know if she’d recover, I took walks whenever I could. I found that parts of nature, a nest or a tree or the weather itself was a vessel that could hold whatever I was feeling at the time. I felt connected to something bigger than myself.  Thinking about this question later made me realize that the natural world is the only place that helps me put life and death into perspective. And because those feelings, fears about our children and their futures, our guilt, anger, grief or helplessness, need a place to both be held and named, I wanted to find images that could help them do that. I wanted the poem to recognize and not shy away from, those painful places, and hopefully by naming them, one could feel ‘seen’, not so alone in them.

Another asked about how I handle a situation where a parent, if, after one long interview/discussion may have opened themselves up to painful emotions and are raw.  I can’t say that I did end all our conversations tidily.  I was aware of needing to find some closure for each person, particularly if I sensed that they were feeling this rawness. In one case I contacted a social worker that I knew the parent was in touch with to inform them about the parent’s state of mind.  I wanted someone else to reach out to her when I was no longer around. If this happened, I am not sure.  This parent didn’t speak her story to hardly anyone and I realized that I was not only given a rare gift, I had a responsibility to not abuse her trust since she didn’t really know me.

All in all this project, this series of poems, that I have come to call, What Cannot Be Swallowed, has been far more challenging than I had anticipated. It took me much longer to digest all the feelings and thoughts, wrestle with the forms of the poems, rethink the issues, decide what needed to be told and find the words to say them, than I gave myself time for.  As such, these readings are not really the culmination of the grant I received from the City of Seattle to do this project, but are part of a larger loop, a spiral that has led me back to revising some of the poems again.  That too is important, though at some point I will have to let them go out into the world.  Just as I let go of my child as she grows.

I will be reading again on Wednesday, Dec. 5th at 12:30 pm at Seattle Children’s Hospital.  Please come if you can.

Save The Dates:

Wednesday, November 14, 2012

12:30 pm to 1:30 pm

Odessa Brown Children’s Clinic, 2101 E. Yesler Way, Seattle, WA

Wednesday, December 5, 2012

12:30-1:30 pm

Seattle Children’s Hospital (Dining Room 3-off the Main Dining Room-Whale 5)

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.