I had the honor of speaking to and leading a group of parents whose kids have chronic illness, mostly Juvenile Rheumatoid Arthritis (JRA), this past weekend. It was at a Family Camp put on by the Pacific Northwest Arthritis Foundation. Though my daughter has a different rheumatic-like disease, my family attended it 3 years ago when our daughter was very ill and really needed to be with other kids like her. My husband and I found a lot of support from other parents but also from one or two terrific speakers and group leaders.
I do not pretend to be James May, the wonderful counselor and founder of The Fathers Network, whose words to us 3 years ago were so profound and came from his personal experience of having JRA as a child (he still does). I have only my experience as a parent of a child with an autoimmune disease to draw from. And I hoped that was enough. That, and my work as a poet which is one of my primary means of coping with, and expressing my experiences in life. I brought some of my poetry to read to the group of parents too.
The workshop was titled Reviving Your Lives: Coping Skills for Families Living with Chronic Illness. While hearing about some of the effects chronic illness has on families might seem dry or clinical I hoped that weaving poetry into my opening talk would allow another inroad into the emotions we all deal with when a child is diagnosed with a potentially life threatening, but more likely, chronic illness.
I have come to realize that while I reach for images and metaphors to help me express a feeling or situation, these words, if they speak to others, also contain something bigger than that. They seem to contain matter in its ineffable form. Does this seem like a paradox? I guess so. Let me come at it another way.
After my brief lecture time in which I also asked participants to do a little writing around some questions I proposed, I asked them to split up into groups. They would have an hour or so to talk among themselves about ways they have discovered of handling and enlivening their lives. I knew they would talk about whatever was important to them and it may or may not get to the issue of coping skills, but whatever they did was fine. I have learned that being in a group of people who share similar experiences is, in and of itself, important. So in a sense, each group of 10 people (there were 60 people that day) became their own little world, supported and surrounded by each other, all talking about their fears, hopes, realities and details of having a child with JRA.
Each small group, like a good image, held all the possibilities of healing within it. Their words, their ‘being together’ created something bigger than each of them on their own. And maybe this is what matters. The words matter. The being together matters. Through attention, listening and head nodding we not only hold each other, we allow room for the ineffable to become embodied. That which seems unspeakable comes out. And because this group came not to write poetry but to talk, the words spoken and heard, matter.