Failing to "Fix" Loss
Chronic Illness and Yielding Control
I’ve recently regained some ability to read by doing a funky tape trick with my glasses — binasal occlusion — that keeps my brain from having to try to unify and create a stable image where my vision overlaps. It can resolve symptoms caused by brain injury that makes the brain unable to keep up with creating stable visual input by reducing the load. This has not solved the brain fog, the slowness, or the difficulty in making connections where they used to spark, but I can now read or write in short bursts without getting motion sick, which is an improvement. A consolation prize, I suppose, for the way that it feels the rest of my body is running away from me.
And as I am reading, I scan ahead. Flip through the pages to alight on where a gut punch lands. “Dealing with loss of control is the most difficult aspect of acceptance. The single most frightening feature of chronic illness is the uncertainty” (Cheri Register qtd. in The Rejected Body).
I’m crying again. I’ve wrestled this aspect so many times in the past three years. I’m not good at relinquishing control. My admirable efforts fail repeatedly whenever I’m faced with a new loss, a new uncertainty.
How do I participate in things I want to participate in — in things that I love — in the face of all this uncertainty? I’ve spent the past year learning how to pole and do some of the physical things that I love in a way that was sustainable for the body I had, only to see another round of illness strip away all that I thought I had known. The uncertainty grows: “Nothing is working anymore. Is this temporary? Do I need to quit the final few things I’ve held onto? Maybe I’m not trying hard enough. Why isn’t there a way to just fix this?”
I find myself again grasping for control because I’m frightened. Looking for fixes. Trying to get back to where I was because I don’t know how to face another loss. What is left of my interests, hobbies, and connection to the outside world if I lose this?
And where is the line between exploring and working with my body to find joy and expand my options for participating in the things I love versus attempting to force, fix, or control? I honestly still don’t know. Maybe not knowing is another piece of relinquishing control.