Friday, January 3, 2014

Thin Ice and a Loose Screw

This week, for the first time in 25 years, I was able to visit a doctor with health insurance coverage. I was "uninsurable" for 25 years due to pre-existing conditions – despite working since age 15. It went well. So far so good. It feels like a terrible weight is lifting. And yet I am simply experiencing something that my family, my friends, and my colleagues mostly take for granted. I hope to recover from some of my symptoms. But I don't know that I will recover from the belief that my life has less value than others'. Otherwise wouldn't I have been worth saving? Aren't I worth fixing, too? The last 25 years feel like a cruel experiment. I had to think of the time when I was 6 years old and a bunch of us decided to go ice skating on the Norwalk River.

It was late winter, and the uneven ice had started thawing. We were forbidden to skate on the river. So we snuck outside with our skates. Some held back once we got there, slowly pulling their laces, eyeing the bubbly surface. I wanted to show off. I had a habit of tagging along behind kids who were older than me. Lisa Dellio egged me on. I slipped through (I forgive you Lisa. You were, after all, of me, dell'io). We had barely ventured onto the surface, looking for smooth spots. There were none. I ventured further, untethered. The ice broke through, and I found myself submerged up to my ribs. I treaded water, then clutched at the thick intact ice above me. The surface of the thick lump was rough, as were my ice encrusted mittens. The water swirled past underneath, gently tugging. I was afraid to let go of the hold I had. I looked up at the kids who were now standing at a slight distance, fascinated.

Of course we all knew it wasn't safe to approach the broken ice. We also knew that nobody ratted. That was the rule. I was on my own. It is possible that someone tried to loosen the mildewed rope affixed to the raft that sat next to the little pier. It's possible that someone looked for a stick, or shouted instructions to me. I watched them, and they watched me. I managed to pull my right leg out of the water and on top of the ice. I laid my front down on the ice. Somehow I managed to come forward, and then out, without slipping backwards. Everyone split. I ran home, my lower body dead numb. I looked down at the yellow poly knit pants I had on that day, wondering if Mom would know they were wet. Were they darker now than when dry? She was cooking when I opened the front door. I ran upstairs. I hid my wet things. I hid my shame. I thought for a long time about what happened. I wondered why it was me in the water, and them on the side.

Having invisible disabilities means: you are forever stranded on thin ice. You are forever separated from normal. The health insurance companies separate you – by denying or withholding appropriate services due to expense. Doctors separate you – because you are difficult to comprehend and time-consuming to fix. Society separates you – because of their irrational fear of the brain in all its complexity.

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