The Ugly Truth

 

In the winter of 2010, I wrote that I was privileged to have SMA. Now that privilege doesn't seem to ring as true for me. Shocking, right? I am usually the girl you can count on for the upbeat and eternally positive. Don't worry she didn't go anywhere permanently she is just on brief hiatus. Today I am a grouch. I am angry. I am whatever the inverse of happy go lucky is and most of you don't know that side of me. But please don't be afraid because I think you will understand, once I get to the point. Bear with me...

At 25, I have had my fair share of bad days. I remember clearly the first day that I realized I was different. Oh the horror of being 6 years old and realizing that I was, to my udder amazement, not the stereotypical first grader. Staring at the brick wall of my elementary school, in a self imposed time out, I came to the realization that I was different. This epic awareness of my differences was terrifying at age 6. Where had I gone wrong? Why did I have to be different? As the reader, you feel for 6 year old me, don't you? Suddenly aware of the huge differences between myself and the other 6 year olds that made up my playground playmates. But as the reader you are also assuming that I cried, hot streams of anger, because I could not participate in some physical activity that segregated me because of my physical limitations. That is where you would be wrong. Those tears of inequality streamed down my tiny round face because I had suddenly realized that I was not and would never be African American. Yes, it seems ridiculous now that it had not occurred to me previously that the whiteness of my skin disqualified me as an African American but the 6 year old me was devastated . My differences in physical ability or lack thereof didn't impact my self esteem until much later in my life.

Now, what was the point of that story, right? My point is that, in general, the situations that are supposed to make me mad, don't. I am not angry that I have SMA. I am not grouchy that the things that I could do 5 years ago are a distant memory of abilities. I am privileged that I am alive. I am privileged to have been raised by individuals who didn't let me have pity parties often. Today sucked and everyone would agree with that assessment, SMA or not. Having said that, it doesn't mean that tomorrow won't be a great day. (it probably won't be because it is going snow and ice tonight but that is another story for another day) Seeing that today was not so great doesn't guarantee that tomorrow won't be at least a tiny bit better. Having SMA isn't the privilege; being alive is!