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..