People often refer to the “elephant in the room”, meaning some kind of topic or thing people notice or know about but no one is talking about.
So here’s the thing: when I’m around or meeting new people, I’m the elephant in that room. As someone with a limp but not a wheelchair, I often perplex people when they see me walk or struggling to get out of my seat (why I’m terrified of where I’m going to sit when I go to people’s houses or parties). Understandably, most people don’t want to ask me about it directly and after all the times people point out my limp, I’m actually appreciative of that. They’ll often ask someone else who does know me (sometimes when I’m around, sometimes when I’m not) or I’ll get the automatic look at my foot/leg as I walk by. That part makes me a little more uncomfortable even though I can understand it.
I know it’s good to raise as much awareness as possible no matter how that might come about, but it’s another one of those things I wish I could just turn off. I would love to be able to meet a new group of people or go to a party and have the usual anxiety about meeting new people and that’s it. Not anxiety tied in with people noticing my limp or having to explain myself or worry about weird looks when I’m getting off the couch. I wish I didn’t always have to be the elephant.
I’ve opened up a lot in recent years. The idea of meeting new people used to terrify me and I barely spoke when I did. But now I’m much more open to it and I’m much more outgoing and let people see my humor. I get more excited to meet new people and make new friends. Unfortunately, that apprehension about my MD and how they’ll react has never quite gone away, and it probably never will.
I think in the end, it’s not that big a deal for people, especially the right people. Of course I would like to have a “regular” meeting experience with people but the (positive) reality is that if they take the time to ask, then they obviously care in some way, are curious, and they want to learn. That’s the whole reason why I blog and talk about my experience: to raise awareness. So if by meeting new people I’m also helping raise awareness for both muscular dystrophy and for the different face of disabilities, then I’m more than happy to do that. I’ll happily be the big giant pink elephant in the room 🙂