April 29, 2016

What is Luck, What is Fortune?

51kg0CmHBpL._SY355_I am not writing this to sound ungrateful, humble or mean, but I have to challenge the good people and friends, (family even) who, for more than 10 years now, have commented that our adopted daughter, who lives with, and has suffered from Juvenile Myositis (JM), a rare autoimmune disease, is fortunate to be with us.

Why do I question this? From one perspective I am so glad that we are able to provide the healthcare she has needed. But from another perspective, this is not something she, or we, chose to have happen. Yes, we chose to adopt a child and we feel fortunate to be blessed with this child, (who was healthy for several years), but we didn’t get to “choose” her, she was “next in line.” Does that sound crass? It simply is the way it is. She didn’t choose us either, we were next in line.

After adoption we became her parents, and like any parents, we did whatever we could for our child’s health and well being. If there is any “fortune” involved in her coming to us it is these facts of chance. A) We live in the United States where there is the possibility of decent healthcare vs. Guatemala, where she came from. B) We are highly educated people and are able to negotiate the healthcare and insurance mazes. C) We speak English. D) We have enough income, so that when our child got sick and it necessitated one of us quitting our jobs, we were able to make ends meet. My husband, who had health insurance coverage, kept his. E) This may be the most fortuitous but also random fact of all: when she got sick, none of our doctors locally were able to diagnose her. We went from one to another for over a year. Finally, as the result of several other events, I called my step-father, a neuromuscular disease expert who lives in another state. We travelled to see him and after a few tests, he and his colleagues were able to diagnose her. So began our long journey of treatments, education and understanding of this rare disease.

While JM is life changing, it is not the only important thing in her life. And whether she considers herself “lucky” to have us as parents, is for her to decide. If she is like most kids, she has positive and negative thoughts about us. She has other issues to contend with besides her illness; adoption is one of them, the challenge of growing up Latina in a dominantly Caucasian household is another, and then just plain “growing up.”

I often turn the tables on this idea of good fortune and think how lucky I have been to have her in my life. Loving her has opened my heart in a way it wasn’t open before. I acknowledge my own vulnerability; my greatest love is walking around in the world with my heart attached to her and I can’t control what happens to her. I am pretty sure this is true of parenting any child.

I would never wish this disease on anyone or any family, but in the process of learning about, and dealing with it, I have grown both spiritually and intellectually. I have learned what is really important to me, and health and quality of life are at the top of that list. I don’t sweat the small stuff, what her grades are or the fact that we don’t get to do as many physically challenging, outdoor activities as we used to before we adopted her. But as she’s gotten healthier we have been able to do more.

I have become more flexible. Quitting my last job as the sole proprietor of my own landscape design business to care for her, opened up the opportunity for me to take my writing to another level. For years writing was one of my outlets for creativity. When she got sick I wrote to relieve my stress; writing about my experience allowed me to find some “order” in a life that was suddenly turned upside down with her diagnosis. I have since gone back to graduate school to get an MFA in Creative Writing. Even before that, I had started writing/support groups for parents who also have children living with chronic illnesses. As my child became an adolescent I started writing groups for teens living with chronic illness and will continue this work and offering reflective writing courses/workshops for healthcare professionals as well. I love the fact that I can return, in some sense, to an earlier career, that of mental health counselor with the added benefit of incorporating a creative outlet in my work.

So when people say how lucky my child is, I think, well maybe, but she does have to live with this, as yet, incurable disease, so what’s lucky about that? And I think, how lucky we are to be able to help her. I am not a big believer in fate or God, but I am a believer in making the most of what is given to us in this life, things we choose and things we don’t choose. I hope, like the first part of the Serenity prayer by Reinhold Niebuhr says, I am learning what I can change and what I can’t change.


God grant me the serenity

to accept the things I cannot change;

courage to change the things I can;

and wisdom to know the difference..

Brain Review

After reading a blog post of mine, I was recently contacted by a woman, Allison Morris, who has made a simple graphic  (at onlinecollegecourses) of the brain to help people understand the supposed functions of each area.  While I applaud this lively experience I am reminded by Joseph LeDoux, in The Synaptic Self, that the brain doesn’t only have discreet areas of operation, it is in the synapses that information is recorded and stored and then transferred to other areas of the brain and to the genes themselves.  Here is a statement by him:

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..

A case for writing about children with chronic and/or terminal illness: from a parent and poet’s perspective


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..

Can you Think and Feel at the same time?

Psychotherapy is geared towards our capacity to do both. But what about our brains.


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..

Fear of Relapse-turning bubbling-baddies into art

I have noticed that though my daughter is feeling good, looking and acting like most other ten year old girls, I still get occasional bouts of fear of disease recurrence. I should mention she is on a small amount of medications and she’s still tapering off of them, so she’s not technically in remission from her original eruption of disease. And though she has a rare autoimmune disease, one for which there is not yet a cure, I take some comfort from reading and talking to mothers of kids with cancer whose children are in remission. We have been through similar experiences. http://community.lls.org/message/88611

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..

2 Years after Diagnosis-5/08

This past weekend we spent three days in the Methow Valley. It is a place we have gone to the past three years as a family for Memorial Day. We have gone with friends and there have always been at least 2-4 other kids around.

Two years ago, before F was diagnosed with Dermatomyositis (JDM) but after almost a year of living with this progressive disease, she would not leave my side to play with others. She complained about walking up or down a hill, she was shaky in her body, in her approach to the world, and much of her behavior and moodiness was not understandable to me at the time. On that weekend, friends of ours who live in the Methow came to visit with their horses. F said she didn’t want to ride the horses. I told her she didn’t have to. When they arrived, she ran into our little trailer screaming and wouldn’t come out. I had to coax her out and hold her on my lap and even then she could only tolerate being in their presence for a few minutes.

Last year at this time, May 2007, she was 4 months into treatment and in a lot of pain. She was very withdrawn, barely able to walk. Sleeping and getting in and out of bed or to the outhouse was excruciating. It wasn’t much fun for her or any of us either.

A week before the Memorial Day holiday this year, F announced she wanted to try riding her old bike (the one without training wheels) and see if she could do it. We went to a basketball court near us to practice. She got a little of the balance worked out. Excited, she was very determined to keep going. A few days later some ponies and a horse came to a fair in our neighborhood park and she asked to ride the horse (not the pony). She got on it and rode in a small circle led by another young girl. She announced she was afraid while on the horse, and I remarked she had done it anyway.

This past weekend, back in the Methow, our friends with the horses showed up again. This time F got on the horse, was led down and around a road, riding more than in circles, and wanted to keep going. Then she asked if she could take riding lessons!

She ran up hills, went off to play on her own initiative with the other kids, went all over the place walking, running, laughing (even to the outhouse by herself).

The transformation is a marvel. It is amazing to realize how wise her body is. It was painful for us to see her becoming so timid and afraid at 4 ½ years old after having been strong and sturdy, to watch helplessly as she got weaker and weaker. Even after diagnosis we struggled as she withdrew far inside herself, perhaps to tolerate the pain and immobility and the effects of the drugs on her moods and spirit. She instinctively knew what to do to protect herself. Now, to see her running, laughing, initiating activities and her courage in doing things that scare her, I say her body/mind also knows what she can handle.

I have to believe that her body and mind worked together in both the disease process and the healing. Without one, her physical strength and health, she didn’t have much of the other, her joyous, courageous, Pushing Forward Into Life spirit either.

I can’t fully comprehend the intrinsic bond of mind/body/spirit, I just know from personal experience and again, watching my girl struggle and grow, they are always connected.

by Suzanne Edison, May 26, 2008



“Education of a Gardener” in The Seattle Times, July 11, 1999 and inHeronswood Catalogue, 2000 “Nonverbal Communication in the Classroom”, New Horizons for Learning, 1984