The Grey Area

In a discussion on one of the facebook MG groups, a thought hit me, and then I thought ooh this is a good writing topic!

The grey area.

Imagine this:
You are inside a store and you see someone being pushed in a wheel chair. You think to yourself hmm... maybe they broke their leg, maybe they are paralyzed from the waist down, maybe they have MS and can't walk. Or you are less curious and think nothing and carry about your shopping.

And then you meet again by the fitting room. As you walk up to the fitting room you see this person in the wheel chair. Perhaps you think good thing they have an accessible room big enough, or you think how is that going to work, or you get impatient thinking someone in a wheel chair is going to take longer and make your wait longer.

And then what? Right before your very eyes that person in the wheel chair gets up... on their own... and walks. She walks right into a regular room. Now you are bewildered and so you kind of keep watching their feet under the door... up, down, up, down... as she tries on two pairs of pants. Everything you thought you knew about this stranger in the wheel chair goes out the window as she opens the door, walks out of the fitting room, hands back a few items, walks back to the wheel chair, and plops on down.

What just happened?

Were you imagining that? Is this a dream? Was someone just cured right before your eyes. Are you on some hidden camera show to catch your reaction? Is there some mysterious illness you don't know about? Is this person a fake???? That ends your thoughts. This person must be a fake. She must be lazy and demand her mother push her around in a wheel chair so she doesn't have to walk. She's probably one of those people that makes everyone do everything for her. Oh no now I know what it is, you think, she loves attention. She just wants to fake it in a wheel chair because people in wheel chairs get attention. Clearly she has nothing wrong with her. She was just walking. Fake.

That is utterly incorrect. This, my friends, is MG. Myasthenia Gravis. You can't say it, can't spell it and certainly have no clue what it means. So I'll help you out.

It's the grey area.

MG isn't walk or don't walk. MG isn't wheel chair or no wheel chair. MG isn't black or white. It's far from. You never know what to expect with MG. Some days we need to use a wheel chair or maybe walker, other days we don't. Some days we don't have the strength to go anywhere even in a wheel chair. Other days we will use the wheel chair for long distance and walk any short distance. I know it's confusing for your eyes but this is MG. We walk, we sit, we stand, we sit, we lay down, we sit, we walk, we stand. And we do this over and over and over depending on how badly MG is affecting us on any given day or moment.

(Edit thanks to an MG friend who brought up a very good point--) Furthermore, MG doesn't "just" affect our legs. It doesn't "just" affect any part of us if we have generalized MG. It affects legs, arms, trunk/core, face, swallowing, breathing, vision, any voluntary muscle in our body. So for this reason, no we cannot push ourselves in the wheel chair. For this reason, using a walker isn't always a help. It's not just our legs going weak that we need to stabilize or rest, it's our entire body arms included. So again, in having someone push us, we aren't being lazy... we are saving ourselves a trip to the hospital from overusing our arms in which the MG could progress to the diaphragm and paralyze our breathing.

This wheel chair acts as an extension of ourselves. It allows us to get out where or when we otherwise couldn't. It allows us to conserve our muscles for things we have to do as opposed to things we want to do because we can't do it all. We aren't being lazy. We aren't faking it. We aren't miraculously cured right before your eyes (though that would be amazing!). We have MG.

So if you ever see someone in a wheel chair start walking, or someone you think looks fine park in a handicap spot, or someone look drunk who you thought didn't drink... think about the possibility of MG or another rare disease you may know nothing about. People come up to us and accuse us of many different things or question us in an accusing manner or give us dirty looks. I have no idea when ridiculing or judging a stranger, or anyone for that matter, became an acceptable behavior, but it shouldn't be. Instead just give them the benefit of the doubt. Personally, if you're going to do anything, I would much rather someone ask me why that just happened with a non-judgmental ear wanting to learn, as opposed to their mind running wild with incorrect thoughts and insulting stares.

MG is not black or white. It's every shade of grey, and we never know which one.

Awareness is key. Please pass this on. Thank you.