Just a few of my Moebius Syndrome Awareness Day photos. Not really in the mood to write anything as honestly as I don’t have any novel thoughts on the day or anything else. But photography is a bigger outlet for me right now, so here ya go.
Be aware. But beware of how you are being aware. Whew, a mouthful. But true.
The Moebius syndrome community is all about awareness right now, talking about facial expression, smiling, every heart euphemism you can imagine.
I’m doing it too, but I’m also imploring a different kind of awareness. Awareness of how different we are, and how Moebius syndrome affects us differently.
Sometimes, maybe often times, the fact that I can’t fully smile is the least of my problems.
I woke up this morning, and it physically hurt to stand up. My legs always hurt. I’m often tired. My hamstrings are so tight (no matter how many barre classes I take) that I can’t bend my knees, I kind of fall to the ground in a super awkward collapse.
I sometimes randomly fall over, out of nowhere.
I don’t drag my awesome service dog around for the heck of it. I have him because I usually hurt. He doesn’t alleviate the pain since I still have to actually go out and do stuff… but he helps me where I struggle.
So today I’m going to unpack my new apartment, go grocery shopping, go take a riding lesson (yes, I found the perfect sport that doesn’t require standing, walking or running!) and implore you to truly look beyond face value.
Sometimes I feel it. The pressure of just being, of just being with Moebius syndrome. Being unique, and having that uniqueness be intricately tied to yet completely devoid from my conditions. Trying to find that within me that walks that line. I fail at it. I go full-tilt one way or another, trying to find that balance. I tweeted this earlier today as part of chat, and it is a reminder to myself.