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Awareness & Pain

It’s awareness season. 

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.

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