My body isn’t behaving the way I want it or expect it to, and that’s a real struggle.
A prime example is what happened Saturday. I worked a short (and mercifully easy) shift, then came home and changed my clothes. The goal was to get my kids out of the house for a few hours and to give my husband a break. The boys and I loaded into my car and drove to a playground. To my joy, they had painted hopscotch boards.
Back in middle school I was a hopscotch queen. I’d spend all recess with my girlfriends playing. I could hop a board in no time flat.
Well, now I’m 41. And then there’s the added nastiness of my kidney failure and the breath stealing anemia. I temporarily forgot how sick I was, until I completed half my turn. My kids were watching, and I had to finish, but I did it while gasping for breath.
Yeah, dummy, you’re too sick for this. Reality came crashing back in the bright sunlight on a deserted playground. The handicap parking tag in the car, the appointments for doctors and injections, the daily medicine minders (green for morning, blue for evening.) My “new normal” is a life revolving around hospitals and couches and my bed.
I so wanted to play with my kids, to take turns on the hopscotch board. Instead, I parked my butt on a bench and cheered them on.
My decline in health over the past year in particular has me soul searching. Who am I when I can’t do the things I thought made me…me? I spent years defining myself as what I did, as if my resume was equal to my worth. As I become more disabled, I can no longer define myself by my work. I know I still have value, but finding it will require me to change my focus.
Disabled. That’s a loaded word. It’s a word I would use for people needing wheelchairs, canes, and special vehicles. I need none of those. If you were to look at me, you wouldn’t see my broken parts. They’re all on the inside. You wouldn’t see my atrophied, sclerosed kidneys. You’d miss the super low hemoglobin and red blood cells. The high creatinine and BUN would completely escape you. The outside looks…normal. But what is normal?
Normal is nothing more than a setting on my washing machine. My work this year is getting acquainted with my “new normal.” The sooner I can adjust, the better it will be for me and my family.