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.

By

Hospital Learning Community–What to do when overwhelmed

Iskra Johnson

In March I was asked to participate in a Learning Community event at Seattle Children’s Hospital for non-direct care, non-clinical staff, to learn about ways to manage and express their emotions or reactions when hearing stories from patients and patient’s families.

I was one of two parents who was asked to tell her story. The rest of the participants came from a variety of jobs in the hospital. There were clinic schedulers, clinic supervisors, people from the insurance processing department (who participated via webcam from another building), continuous improvement personnel, a hospital chaplain, and others. A social worker from the Family Support Team led the event and she asked me if I would also create a writing opportunity/exercise for everyone.

The format of the event included hearing from everyone in the room about what their position in the hospital entailed and what they hoped to gain from today’s event. There were more than 20 people in the room and more via webcam. I was stunned at the desire and need that these dedicated people were expressing.

Some of the comments I heard included:

“I hear so much frustration from the parents when insurance won’t cover a needed treatment or medicine.”

I feel: “…sad”,”…overwhelmed…”, “…angry…”, “…frustrated.”

“How do I control myself from crying?”  Others said, “I do cry, but then what ?”

People wanted to know how to honor the family’s experience and support their staff simultaneously.

I suggested to the social worker the following ideas before they heard from us parents:

a) they should write down their hopes and fears from today.

Then, while they listened to our stories:

a) encourage them to notice what they are feeling in their bodies, what thoughts come to them, and without judging those reactions, write them down.

As a parent, I was asked to talk about my journey with my child, what I had learned as a parent, and what I wanted others to know about my current and future interactions with them. But first, I read a poem I had written called Only Serious Applicants Need Apply. It was a conglomeration of feelings and experiences that many parents who have kids with ongoing health issues face. I had written it a few years ago and I felt it captured not only the various roles we as parent caregivers embody, but it also expressed loss, grief, fear, helplessness, and a heightened sensory awareness.

Then, since they had heard from two parents about their ongoing journeys and the struggles and joys we encounter, I asked them to notice again in their bodies what they “carry.” I took them through an inventory of the major areas of the body, areas that we tend to hold feelings and thoughts: head, shoulders, heart, belly, legs, back, etc. I asked them to notice if there was weight in any of those areas, and if so, what sort of image might describe that weight. I suggested they use all their senses to best articulate that weight.

Finally, I asked them to imagine a container for one area of what they are carrying. And again, to describe it in images with color, texture, sound etc.  If they could put the container somewhere for awhile, where would that be? And if there was something in it that’s useful, what is it?

The range of responses demonstrated their considerable engagement in the whole process. Someone wrote a poem where a tree was her container, and the various parts of the tree held different aspects of her. Other images included a basket, a bubble with rainbow colors, a quartz crystal, a snake on velvet cushions and a jewelry box. There was a sense of being “brave” about sharing these images and there was much support within the group for their vulnerability.

At the end, I suggested that people could take 10 minutes before going home to write about their experiences or at night before bed, as a way to help “hold” and acknowledge their realities simultaneously.

Overall, I came away from this experience feeling grateful for the opportunity to both reflect on my experiences as a parent with a child with health issues and to offer others some of the exercises I’ve used to both contain and express these intense feelings. When folks who are not direct care givers want to expand their capabilities within a hospital setting, and when this expansion is about growing as humans, then the care they will give and we will receive, will also  offer more genuine support and honesty.

 

By

Writing as a Righting Journey Workshop @ Seattle Children’s Hospital

Sunday, October 15, 2017

Seattle Children’s Hospital–RC.3.906–River entrance

11am – 2:30 pm

Free

Join me and other parents as we explore how parenting children who live with an ongoing physical or mental health issue affects our lives.

No writing experience necessary. This is an exploration for you.

For information or to RSVP: su************@****jm.org

By

Envy, Guilt, Grief and Letting Go

Angela Berg-Dallara says in her book; The Dark Side of Autism: Struggling to find Peace and Understanding When Life’s Not Full of Rainbows, Unicorns and Blessings, “It feels a little odd to be around people with neuro-typical children. I can’t describe the feeling exactly. The feeling is a combination of envy, jealousy, perplexity and a drop of awkwardness. I hate the way I feel around normal children, so now you can add shame and guilt to my list.”

Neuro-typical and atypical kids together

It’s not just parents of children with autism who feel this way. As parents of children with chronic illnesses, disabilities and / or mental health illness, whether it’s autism, diabetes, cystic fibrosis, cerebral palsy, bipolar disorder or one of the myriad other ongoing mental and physical issues, we have similarities and differences from parents of more typically developing kids.

One common experience for all parents is to fantasize about what their kids will be, or do, as they grow up. But, as  parents of atypically developing kids we experience the loss of the dream and need to find a “new normal.” This loss manifests itself in various ways over time and whether we like to admit it, seeing “neuro-typical” children and families can often produce envy, and concomitant feelings of guilt for having those feelings. We are comparing our children to others. In our minds other families, whose children may experience common viruses, or broken bones, have it easier. And some of them do.

Not only do we grieve the loss of the dreams for our children but woven into that dream was one for ourselves as parents and families. As our children grow, and don’t make the milestones others do, of talking, or walking, or making friends, or whose lives will be shortened by their disease or its treatments, we are likely to revisit the grief, anger, and envy, in many different situations over time.

We are also angry and hurt when those with neuro-typical children are insensitive to our needs and realities. We may get past grieving the fact that our child will not play soccer, that we won’t be soccer moms or dads. Then too, we miss the friend who used to make us laugh but who could never sit with us when we were sad. So often, we end up letting go of friendships, and sometimes family member themselves, that we had before our children were born because they just don’t understand, or try to understand, what we live with on a daily basis. We grieve those losses too.

As a mom of an autistic boy I know, says, “I live in the deep end of the pool with other people who have similar life experiences, and I can go to the shallow end when I have to, but I don’t live there.” By which she means, that most of us with atypically developing children end up finding supportive communities of like-minded and similarly experienced families. It is easier and more satisfying. We don’t have to take care of others feelings, those who feel awkward around us because they don’t know what to say or how to include our families in their lives. We can share our feelings of envy, fear and anger and know we will be understood, that while we may feel guilt and shame for those feelings, they are typical feelings.

And even with all these difficult experiences and feelings, as we come to accept or accommodate to our given realities, most of us come to value the differences in our children, the richness they bring, and the awareness of what is really important in our lives.

By

Trauma, Writing, and the Brain-Part 1

from The Body Keeps the Score--Van Der Kolk

This quote from The Body Keeps the Score, by Bessel Van Der Kolk, among so many others in this book, jumped out at me. In my work with parents who have a child living with ongoing health issues, I offer readings and writing prompts and opportunities to connect their emotions with new thinking. It has been my work now for several years, to investigate and create writing exercises that do not merely re-stimulate traumatic experiences but help us to both contain, think about our experiences, and move forward in our lives.

It is my contention that parents of children with either acute or chronic health conditions, experience a form of traumatic stress which becomes post-traumatic stress as the years go on. Perhaps our child (and the mother) had a devastating birth experience that left her permanently effected developmentally. Or perhaps it took awhile for the health issue to show up and be diagnosed, during which time we may have not been able to get doctors to take symptoms we observed, seriously. Or perhaps our child simply came down with an obvious but incurable disease and we are coping as best we can with the day to day effects. Whatever the causes, reasons or actual illnesses or disabilities, we parents experience some commonalities. Chief among them is grief, anger, guilt, sometimes depression and /or, despair.  Likely our sleep, our eating, our work, family and social lives have also been greatly impacted.

In my new writing groups, parents may be in a supportive community for the first time. They often need to “tell their story” to some extent. I try to keep this aspect both possible and limited. As I have come to understand, and as Van Der Kolk says, telling the story doesn’t usually change how we physically experience the trauma. (Van Der Kolk’s subjects are those who have experienced direct trauma through abuse, violence, war or deprivation of some sort. Yet, I believe many of his assertions apply equally to parents of children with ongoing health issues.)

How does writing change our brain chemistry and bodily responses? How and what we write is what I think is most important. The structure(s) of the group provide a holding environment from which we can begin to acknowledge our realities and explore new options. From the moment people walk in they will see tables and chairs in a circular or rectangular arrangement. There will be a couple of boxes of Kleenex on the tables and a separate table with snacks. I start each session letting everyone know, that I know there is a range of what we are all dealing with and that I believe we have commonalities and wisdom to share with each other. Before going around the room I ask everyone to sit, close their eyes and take a breathing “inventory” of how they are feeling, and what they are aware of in this moment.

I ask them to think of 3 words or images that might capture those experiences. I also ask them to think about their hopes and fears for this workshop. (It is important to limit their hopes and fears to this workshop time…it is too easy to worry about the future and agonize over the past. I want to bring people to this moment as best I can.) After a few minutes of inner contemplation I suggest they write their 3 words and hopes and fears. Later on, they will have a chance to share those if they choose. But they can also choose not to.

Then we go around the group and I ask for their names, their child’s name and age and just a little about what illness or disability they have. I try to limit them to 5 minutes. Sometimes, it is clear that people really need to share more and I gently suggest that we will have more time for sharing as the workshop progresses.

I will say more about the specifics of what kinds of readings and writing prompts I offer in another blog post. What I want folks to take away from these ideas so far, is how to provide a holding environment, a container, for the work to come. Building trust between me and the participants is important and I think having a clear structure is one of the building blocks of trust. The actual readings and writing prompts and how I structure the sharing moments and ask deepening questions are also part of the “holding.”