• “Let me tell you about becoming a sickbody.

    I have Ankylosing Spondylitis. Really, all you need to know about it is that it’s a chronic auto inflammatory disease. Mind over matter muddles with the unpredictable, calculated precision of autoimmune inflammation causing kyphosis and iritis.

    I am watching myself transform from a healthy, active, invincible woman to a disabled, immobile, needy person. I emit solid grunts and gasps of masked pain and now it’s happening startlingly unbeknownst to me in public spaces. I’m sharing my vulnerability without choice, with people who do not know me, whose only duty is to hold or withhold judgment of this masked-pain crusader.

    I’m at a tipping point and I know which way I’m tipping. I’m not getting out of this alive.

    We, the chronically ill, stage losing fights in our sleep for disease regression and a return to our traditional bodies. We want an end to this gut-wrenching, spine-aching, head-spinning gift of our precious sickbodies.

    We are not role models because we woke up and chose to be. We have no choice but to fight for sanity and purpose every day of our lives, with every beat of our heart, with every step of our feet or our cane or our walker or our wheels.

    We did not change, our bodies did.”

    -written by Charis Hill on August 18, 2015.