The Language Between Self & Sickness

chronic illness swimming

For all my #spoonies out there, do you ever feel like living with #chronicillness is like performing an elaborate dance with your mirrored reflection? Sometimes she, the other, moves out of step. How could it be possible?

One of the biggest adjustments in my life has been learning to live with the unpredictability and powerlessness caused by my AS (#AnkylosingSpondylitis—say that 5 times fast). Today and yesterday I moved through fog. Body tired, mind aloof. I have had to learn to live with it, because no matter my goals or plans, my body—me—may, as a horse, stall. Today I am stalled, but somehow I’ve got my bathing suit on and am pushing through. I don’t think “pushing through” is always the answer, but it’s what I need today.

AS is one of the diseases that actually gets better (meaning has some relief, but is never cured) with movement. Many other diseases require rest. Ironically, this is a fine line—it hurts to move, and it’s hard to move when you’re tired, but you need to do it anyway—and that’s because my body makes bone where there should be tissue. My actual spine is a morphing thing. The inflammation is a war. I’m like the tin man.

I find there is something beautiful about the language between the “self” and the sickness—how we play a delicate game of tug of war, learn to predict one another’s needs. My body has made me suffer, gain weight and keep it, learn new ways of moving, cancel plans. And that’s ALL okay. It is alive and precious and it forces me to both be aware and present. To love myself, or at least try again when I fail—and I do fail. I wouldn’t wish chronic inflammatory sickness on anyone but the silver lining is the dialogue that happens between the selves.

I am SO grateful to be alive. To be healthy enough to move. To be able to swim. But I wish I could translate the small moments of gratitude into healing for everyone. It takes a lot to be in conversation with yourself all day, everyday.

I applaud those of you have to do it.