May 24, 2016

Fear of Relapse-turning bubbling-baddies into art

I have noticed that though my daughter is feeling good, looking and acting like most other ten year old girls, I still get occasional bouts of fear of disease recurrence. I should mention she is on a small amount of medications and she’s still tapering off of them, so she’s not technically in remission from her original eruption of disease. And though she has a rare autoimmune disease, one for which there is not yet a cure, I take some comfort from reading and talking to mothers of kids with cancer whose children are in remission. We have been through similar experiences.

I know these feelings are normal. But I hate the anxiety. Every time we reduce her medications, every little step towards remission, is a double-edged sword, a kind of “damned if you do, damned if you don’t” feeling. THIS IS NOT A WAY TO LIVE. And that word, LIVE, is the operative one here. What can I do to keep alive, I ask myself, and do I really have to put myself through this? How can I turn that bubbling stew in my stomach into something nourishing?

Here is what I have come to think. I can’t stop the feelings. What I can do is choose how to react to them. I can pretend to ignore them. OK, that is folly, they come back regardless; I grind my teeth more at night or get an upset stomach. Some worry prompts me to do research or ask questions, but this heart-pumping adrenaline rush non-stop mental agitation of fear mostly thwarts productive thinking.  Like a hamster on its wheel, I waste valuable time and energy engaging in worry.

I am learning to do several other things instead. Now I say to myself, “OK, there you are again, anxiety. I feel you in my stomach, turning my deep breaths into shallow sips. I will now focus on deeper breaths. I will write down swear words and everything I fear—which often comes down to how little control I have over many things, and the fear of losing my child altogether—and then find other, kinder words to use towards myself, towards my anxiety.” For ultimately, it is there to warn me not to become complacent. I also need to say to myself, “ let’s look at the facts right now.”

When I do that, when I write down the feelings AND the facts too, I find it is becoming an easier and more routine way for me to deal with my fears. I scribble on whatever piece of paper is handy, or I journal it at length and sometimes I even turn those scribbles into poems. Here is a poem, Bloodwork, I’ve been writing and revising for the last year. It will be published this spring by UCSF Press (in a slightly different version) in an anthology from a workshop called The Healing Art of Writing 2010.

I continue to look for writing that reminds me I am not alone, that if others can do it, I too can put my feelings into words. When I do, I seem able to hold a little more tension or release it, and I can move on..