Yesterday, I joined a group of writers at Gilda's Club, which is a place that supports people with cancer and those in their lives. I wanted to join them though there doesn't seem to be an agreement on whether or not my tumors were cancerous. (My neurosurgeon says yes; My radiologist says no; Life Insurance Companies say yes; The World Health Organization says no; etc.)
It's hard to have a rare condition and be in an uncategorized category because it's hard to find others to connect with who understand something of my story. I'm in an online support group that means the world to me, but I'd like to connect with people whose bones and skin I can connect, too. I'm thinking maybe I'll connect with these writers who have cancer, and even though I'm out about my unclear status, I feel a little like one of these things just doesn't belong in the group.
I've joined the group both because I want to connect with a community that may understand some part of my story, and because I may want to facilitate writing groups like this for people experiencing trauma or people who have experienced trauma.
I loved the experience. Just like it's lovely to practice yoga in community again, it's good to write in community again. I practice yoga on my own at home every day, just as I write on my own every day, and even though yoga and writing are essentially individual activities, there's an important aspect to having a community invite me in.
Plus, just like it's fun to take classes instead of teaching them, it's fun to be a member of a writing workshop rather than leading one.
For our second assignment yesterday, our leader Gail invited us to write about a part of our body, and like a good teacher, she shared a couple of examples first.
My left foot was feeling cold and uncomfortable, as it often is, so I decided to write about it:
A couple of years ago, my yoga therapist, Cyndi, seemed worried when she saw my left foot. “What happened?” she asked me.
“What do you mean?” I asked. My foot looked the same as always to me, though I knew that my ability to perceive color had diminished after radiation for my second brain tumor. I studied my foot but saw only the foot I’d known for 47 years: a foot long and slender that
was once a size 7AAA, but over time has become an easier to shop
for 9B.
“It’s bruised,” she said. “Did you hurt it?”
I looked again. Over the years I had often been irritated with this foot because it was so inexplicably uncoordinated. In soccer, I dribbled almost exclusively with my adept right foot, alternatively pushing the ball from the inside arch and the foot's outside so that I could avoid using my left foot. When I ran, I worked to keep my balance because my left foot was forever trying to tip me over. I had thought I had a weak ankle, but it turns out I had had a brain tumor.
I continued to study my foot. It looked like the same ol’ foot to me, the
foot that has always been inexplicably uncoordinated. “No. It’s fine.”
Cyndi persisted, “It’s purple!”
she said, gasping, a little exasperated that I did not acknowledge the troubling fact that my foot was purple.
So I looked at it again. Perhaps it was a little purple. But no, I didn’t hurt it. Cyndi suggested that I ask my doctor about it, and we moved on.
As I showered after the session, I looked at my foot again, water trickling down
its purple hue. Yep, it’s purple. Or at least purplish. I worried that there was a new problem with my circulation: another thing to worry about, another slight irregularity that could turn out not to be so slight.
So I asked Dr. McCandless, “Why is my left foot purple? And
cold?” Dr. McCandless studied my left foot, the ankle bone, the
tiny broken blood vessels spider webbing under my ankle bone, the arch of my
pale foot, the little hairs on my toes, my violet nail polish.
“It’s fine,” she told me. “Just nerve damage from the
surgery.” How interesting that surgery in my head made my left foot cold.
Brain surgery and radiation made my foot turn purple. After surgery, my
arm had been purply soft, like a bruised banana if bananas had blood. Dad had said my
brain must look like that, too. I had wondered what else was purple.
Now I look at my left foot every morning. Each morning as I come back to life, I pull my left foot
gently from under the down comforter, out from its warmth. I study it and
massage its arch. I press into the ball. I weave my fingers between my toes. I speak to it kindly.
I welcome my cold, purplish left foot back to the world
for another day, hurt but alive, and I wonder what else in me is purple that I cannot even see.
It surely is tough to step forward and admit to a condition, with all the stigmas and the added fears it might entail. Because a part of coping is outside reaction, or at least outside reaction tends to cut right through it. You may have made peace with your plight, but 'what will the others say'? Which means that the condition is integrative and involves a lots of facets and facilities of our body as well as our being. It may be specific, but in the end, is never localized. Those who handle maintenance and care should keep this in mind, and put forth a solution that is holistic and that takes a lot of our anxieties and pressures into account. Kudos to you, though, for being upright and brave enough about this.
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