Essays

Selected essays and musings on art, healing and education.

February 25, 2014 By Suzanne

Finding common ground: Writers & Parents of kids with chronic illness

For so many years having a child with a disability was a stigma. For some it was shameful, if not for the parents themselves, then often for other family members. Friends disappeared and if families were lucky, they met others like themselves or kept their “real” friends who made room in their hearts and minds for those of us, who may be considered, “other”.

I want to introduce you to three women who all parent a child, or children, living with a disability, and/or chronic illness.

Kim Poston Miller has two boys, both of whom struggle with Juvenile Arthritis. She has a terrifically informative website and has written a book for parents about how to not only survive but how to thrive, living with children with juvenile arthritis. This resource is not only useful for her book, Living with Juvenile Arthritis, a book for parents of kids with JA, but it is great for any parent who has a child with a rheumatic disease (Juvenile Myositis and Lupus for example) or other chronic illness. She also provides resources for families and kids alike, on her site.

Jeneva Burroughs Stone is a gifted writer, essayist and poet. She blogs on two sites, Busily Seeking and Busily Seeking 2.0, about her life with her profoundly disabled son, typically developing daughter, husband and their lives, including their search and eventual finding of, her son’s diagnosis. Jeneva also writes about larger social and political issues that effect healthcare and life with caretaking her son. In her words about how receiving a diagnosis effected their family after 14 years of not knowing she says:

“…not only diagnosis created turbulence (I guess you need to ask yourself how you feel about it, or that becomes a topic of conversation because nobody really seems to know how to respond when you say, hey, I got a diagnosis for my kid after 14 years–we live in a casually therapeutic society), but also changing work situations for both my husband and myself, uncertainties about health insurance both as a result of transition and the question marks of ObamaCare, Robert’s first year of high school, starting a Medicaid waiver with overnight nursing for the first time–and that was just the fall.”

My newest acquaintance, one I’ve really only “met” via Facebook, is Elizabeth Aquino. (To be completely honest, I’ve not actually shaken hands or seen the other women face to face, but I have corresponded with them more extensively and have spoken on the phone with Kim.) Elizabeth’s website, a moon, worn as if it had been a shell, is also a wonderful mixture of excellent writing, disability issues and soul sustenance. She says, “I love poetry and discourse and gallows humor. I like to say that reading voraciously has been the only constant in my life. I am a fierce advocate for my daughter who has a severe seizure disorder of unknown origin, as well as for all special needs children. This is a place where poetry, politics, parenting, and disability intersect.”

I hope you will take time to read these women’s words. Leave them messages, it is one of the few ways caretakers of children with chronic health issues get social interaction. I also hope reading them will expand your view of caretaking in the 21st century..

January 28, 2014 By Suzanne

Family Centered Care & Chronically Ill kids

In the January 20, 2014 edition of The New Yorker, Dr. Jerome Groopman writes about how we might best care for chronically ill children. He looks at teams of specialists that are trying to address chronically ill kids needs from more than one perspective. This is an issue close to my heart and involves a conversation that I’ve been privileged to be part of at Seattle Children’s Hospital.

I will not summarize this article, it is best to read it, but I will point out a couple of important statements and why they need to be taken to heart by other pediatric care providers and hospitals.

Christina Ulrich, an attending physician at Boston Children’s and Dana Farber says about treating pain; “…I learned you can’t treat a child’s pain effectively without understanding her anxiety and her social situation. It’s not just a matter of writing a prescription.” This is profound. She is talking about trying to understand a child IN CONTEXT, within herself, her family and her cultural background. We all suffer, but HOW we suffer and how we think about that suffering or that pain, can lead us to be treated in various ways. For example, when a child is afraid of needles and needs an infusion, there are a number of ways to approach that. There are numbing creams and sprays to help alleviate the actual sting of the needle, there are Child Life experts who can talk the child (and help the family) through the actual needle insertion. They might also need to learn if that child NEEDS to watch the needle insertion in order to feel some control or whether distracting them and helping them focus on their breathing is better for their anxiety.

That is an example of a mild, but potentially frightening pain moment compared to a cancer patient’s treatment needs. In the latter case there might be others on the team that would help the child and the parents decide the best course of action for both pain and treatments. Here is where my second concern comes into play; the family centered approach to decision making.

Janet Duncan, a nurse practitioner said, “we bring a little bit of a different perspective, because we sit with families, who teach us about how they make decisions. It’s not that there is a right or wrong; it’s really what is the best decision for your family, for your child.” I don’t think I could say this any better. Doctors have medical knowledge but the family knows their child and the child herself might be old enough to express an opinion or need. All of this is important.

This is exactly what the Family Advisory Committee at Seattle Children’s Hospital spends time thinking and talking about to various providers and committees throughout the hospital. All of us are parents and we have had either good experiences of family centered care or bad ones. Likely, both, and we don’t want to repeat the bad ones ever again. More and more children’s hospitals are trying to move to a family centered model but it is still rare to have teams of specialists from various fields consulting on one case. Though potentially more expensive and time consuming initially, it may lead to better outcomes and reduced expenses as families adhere better to treatment regimens and their children feel better cared for.

May 14, 2013 By Suzanne

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..

April 2, 2013 By Suzanne

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..