I have found myself worrying too much about what others think. When my kids were little maybe that philosophy was somewhat justified. I did not want my children to have to deal with the repercussions of having an “odd” mother. One example comes to mind. I can remember one time when my daughter was little (maybe 1st grade or so) and her classmates were playing ball in the schoolyard when it got away from them and started rolling down the street. Being nearby, one of the children yelled to me, “Mrs. Gorzela, can you stop that for us?” I didn’t know what to do. I obviously couldn’t run down the street after it. But I was concerned how it would look for my daughter, if I just flat out refused. So I cooly threw my backpack at the ball and lo’n behold, it actually landed in front of the ball, stopping it! Then I could just walk over to it and pick it up. The kids cheered.
But now they’re older, so I don’t need to impress my kids’ friends anymore. I shouldn’t have to make excuses for my actions. But I will confess. I do. I, and many others with Ataxia, feel the need to constantly explain ourselves to others. How many of us sport shirts that say “I’m not Drunk, I have Ataxia”? We shouldn’t need to announce that. What ever happened to “innocent until proven guilty”?
We feel that we need to set everyone else straight before they think the wrong things about us. I actually sometimes wish I had a much more visible disability. If part of my arm was gone, people would notice and sympathize but instead part of my brain is shrinking. People can’t see that so I’m afraid of what conclusions they’re coming to about the way I move. We don’t always need to “throw that backpack at the ball” to make it look good! (But a little creative problem-solving doesn’t hurt either.)