Body and Voice: Finding Self-Trust in the Midst of Illness October 24, 2014

Nothing can throw me off-center faster than a bout of fibromyalgia.  Recently, I had an experience of intense pain that sent me into panic mode. I almost crawled to my doctor for medicine—I was way beyond the yoga/swimming/meditation panacea.  Worried that this might be something else, that my body was really betraying me big-time now, I fretted over Google, surfing for any information I could find. I had finally done it, I thought, finally ignored my body long enough, pushing through pain and discomfort, and now my body was roaring back. After much searching, I found a relevant article about trigger points that seemed consistent with my symptoms.

Having a cognitive framework relieved my anxiety, and luckily, the meds worked. Or time worked. Something worked. I changed some posture habits, began some exercises. But what interested me was those days before I got some kind of handle on what was going on.  I experienced fear–a profound sense of  ego disintegration, of losing my sense of power, of my confidence in navigating the world. I found myself casting about for answers, as if someone else could tell me what was going on. It was only when I was rested, in less pain, and able to amass information, that I finally was able to regain my poise.  I remember the moment when I thought—I can make an assessment, I can make decisions that will help this. I can trust myself. Energetically, it felt as if I was consolidated, rather than fragmented.

The fragmentation I experienced briefly was akin to what Arthur Frank in his seminal book, The Wounded Storyteller: Body, Illness and Ethics, describes as the chaos initiated by a major illness or event like a heart attack.  Frank himself, a sociologist, experienced both cancer and heart disease. Through his own experience, he was able to describe the stages of  our psychological response to illness, the first being chaos. He cautions those who love and work with people experiencing chaos, to simply witness it, not rush to tidy it or minimize it. He describes the burden placed on the ill person to be cheerful, positive for others. He posits that it  is only by experiencing the chaos that we can find our way through to a new narrative, whether one of accepting an illness and finding meaning through the quest, or indeed restitution. “Seriously ill people,” he writes, “are wounded not just in body but in voice.”  Without body integrity, we lose voice. Without voice, we also are fragmented.

I’m glad that this whole experience happened over a matter of weeks, not months or years.  But I was reminded again of how real the journey is from chaos to narrative. I’ll end with the quote prefacing Frank’s book:

“I had grasped well that there are situations in life where our body is our entire self and our fate. I was in my body and nothing else…my body…was my calamity. My body…was my physical and metaphysical dignity.”-Jean Améry

–

Advertisement

Chaos Narrative/Gone to Seed August 20, 2009

Arthur Frank, in his wonderful book, The Wounded Storyteller, describes three “narratives” that ill people use to navigate their illnesses. There is the restitution narrative, which is the story that one will be restored to the previous state of health; there is the chaos narrative, which can not be written, only lived, as it is so traumatic can not be formulated into words; and finally,there is the quest narrative, which seeks to find meaning in the experience of illness.

Frank says that people cannot and should not be rushed out of their chaos narrative. As health care workers, we often seek to formulate people’s experience for them, because we are uncomfortable with the formlessness of chaos, the incoherency of it. I’m thinking of this because I’m only now beginning to emerge from a small taste of dissolution, from my own chaos narrative.

I was recovering pretty well from my fractured thoracic spine, walking, beginning to take showers and getting into the pool for 20 minutes of hydrotherapy. I was still in pain and exhausted, but feeling as if I was getting a grip on the situation. Then my son brought home a summer cold, which quickly passed to me and morphed into a severe bronchitis. I was shaken from fits of coughing, each spasm seemed to threaten break a rib or shatter my already broken spine. The bone pain returned. I had been slated to start on a strong antibiotic therapy to fight my C.pneumonia Igg titers, so I went ahead and took that. Then the trouble really started. The vertigo was so bad I couldn’t even move my head lying down without the room spinning; I was queasy and my skin itched. All the side effects of a hangover without the fun of a party. Still, I thought these would pass and stuck with it for three days out of fear of having pneumonia again (I had walking pneumonia for four months this spring). Finally, I got to my doctor and he changed the antibiotic and upped my breathing treatments.

For almost two weeks I couldn’t think. I couldn’t find a metaphor, naw, not me. There was no pulling me out of the experience, no distancing. I lay in bed watching the pecans ripening on the tree, watching the graceful dance of the trees and the distant white clouds in the blue Renaissance sky. The lace curtains billowed, the breeze was mercifully cool, and there was no I, only the sensations of distress or the abatement of distress. Out on the edges of consciousness I knew there were things I needed to attend to, but I had to let them go, let them drift off and trust that when I finally came ashore there would be a coherent self to deal with them.

When I was well enough, I dragged my poor ruin of a body out to the back porch. I sat and looked at my garden–the cone flowers and bee balm prematurely dead from drought and neglect. Was everything in and around me blighted? Just then, there was a flash of brilliant yellow in herb garden. I squinted. There it was, a goldfinch alighted on the dried bee balm. I had tried for years to attract goldfinches, and yet, without even trying, here it was. I held my breath. It was as if God had sent down this most beautiful emissary to tell me–“I am bigger than your dissolution,than your pain.” And that was the beginning. The beginning of the end of my chaos narrative. Yes, I have gone to seed. But look, there are worse things.

I sent Todd out to buy what he considered a ridiculously expensive goldfinch feeder. The goldfinch pair stick around. I’m feeling better.