This morning I asked my 18-year-old daughter to turn on some lights as she was leaving the apartment. She turned on my desk lamp and a hallway light near my desk and stopped with her hand on the door. “Do you need me to turn on the other light?” she asked, looking back at me. Sitting in my wheelchair, I already had my hand raised to the other light switch. She watched me as I clumsily swept my hand past the switch and turned on the light on my third attempt. “It’s Occupational Therapy,” I told her. She rolled her eyes before leaving.
Yesterday, I watched When I Walk, a documentary by Jason da Silva, who lives with primary progressive MS. Da Silva was named 2015 Person of the Year in New Mobility magazine. The film and article capture the balancing act between surrender and agency that is such a big part of living with chronic illness. On one hand, folks with disabilities need help. We simply can’t do what able-bodied people can do. On the other hand, we want to continue to do what we can and it’s good for us – body and spirit. During the course of the film, da Silva moves from being a one-man documentary maker to being someone who relies on a creative team.
This month I’ve been practicing my promise “to surrender patiently.” It’s a promise that goes beyond asking for help. It goes beyond disability or illness. I live best when I am present to what’s happening in the moment. Surrender, then, is to open to my experience right now. For everyone, that includes bodily experience. For those of us with chronic illness, that often includes discomfort. The discomfort and disability my body brings to this moment are the first things I notice when I bring my attention into the now. It makes each surrender a double surrender.
First surrender: Oh, right, I want to bring my attention to this moment.
Ooo, eegh, there is the pain. Breathe. Make space for the pain.
Second surrender: Now bring my attention to this moment that includes pain and also includes…
One of the instructions my meditation teacher gives me is about my gaze. We meditate with our eyes open, but we are not meant to be focusing on any one point. Instead, my gaze is soft. I am aware of my entire field of vision. Moving my attention past the pain to my larger experience is like moving my vision from a fixed point to the wider field. My larger experience includes the pain but is not defined by it.
This same movement is necessary for living life with illness and disability. Sometimes I need to narrow my focus so that tending to my body takes all of my absorption. Other times, I can live in such a way that my disabilities are included, but not determinant. I am more than my disability. I am more than my pain. What’s required is a simple shift in perspective… and surrender upon surrender.