Robots represent how I feel about my body. I live with a connective tissue disorder called Ehlers- Danlos syndrome. My ligaments are too stretched out to hold my joints in a neutral position. At rest, my bones naturally lay in the fetal position. My muscles have to work hard just to keep my body opened up. It feels like I live two different lives. In one I’m strong, but tense and stiff. Excessive strength and muscle tension are needed for me to be able move. The problem is endurance is not unlimited.
I can only hold myself together for so many hours each day. At a certain point I get too tired and succumb to my second existence. I become floppy, like a drunken marionette puppet. I can easily lift my limbs up, but they only come down with a crash. My feet drag against the ground as I try to walk. I drop things unexpectedly, sometimes a cup, sometimes a shoulder. It feels like my body weighs more each hour of the passing day. I keep fighting until I reach a point where I simply cannot move at all without dislocating a joint ( or two). This battle repeats itself daily. I’m careful to calculate the number of hours I’m up and about so no one should have to see me suffer. I try too hard to hide the truth. I like to protect those around me from feeling the pain. Yet it gets harder to hide with each passing day and I still find myself pretending to be ok.