In a cage

What's it like to watch everyone else around you live while you... well, can't? I wish I could say I don't know, but I do.

Imagine being confined to a bed. If that feels too relaxed for you, imagine you are handcuffed... no not in that way... Alright, imagine you are within a 2 by 2 foot jail cell... but that jail cell isn't inside a jail filled with other people also in cells. Your cell is in the middle of society. Like a bird in a cage... but you're a person, in a cage. Ok I think you get the idea now.

Being inside a cell or a cage, you can see out. You can see everything going on around you. You just can't participate. Imagine if you talk, if you laugh, if you do a little dance to make up your own fun- you get penalized, so, don't do it. Just sit there, in your little cage and be quiet.

Now watch as others run by you, drive by you, go to work, clean the house, prepare dinner, go to the movies, play with the kids, workout at the gym, make a long phone call, meet a friend out for drinks, go get a cup of coffee, go to a museum, go to school, play ball, go on dates, do laundry, eat whatever they want, attend a party....

Remember you can only watch, you can't participate. And then, guess what? You have to close your eyes. Now just sit there, unable to do or see anything.

This stinks. Soon you wish you could get out of that cage even if it was just to do the "boring" stuff like laundry, dishes, running errands. But you can't even do that. And no one tells you how long you are going to be in this cage. So you just have to sit, and somehow make the best of it.

We with MG often feel like this in some way or another. We are confined to rest because our muscles don't have enough in them to move. We have to reduce the amount of time we talk, or laugh, because even that wears down our muscles. When our eye muscles get weak, vision gets affected. All the while our family and friends and acquaintances and strangers carry on about their days like it's no big deal.

Don't get me wrong, we don't want to stop anyone from living their life or enjoying it... but we can't quite do the same. So when you tell us to stay positive, or we have a weaker moment, or we need to cry or vent... remember, we're dealing with a whole heck of a lot that you haven't experienced and it's ok to sometimes be sad about it.

At the same time, since we are trapped inside this cage, we may as well try to make the most of it. And so I go back to the beginning... watch everyone live their life, while you.. can't. But you can. It's not how you imagined, or want or would wish on anyone. But if you are breathing, you are living. So make the best of your moments inside that cage. Maybe you can read a book and teach yourself something new. Maybe you can use a laptop and communicate with others. Maybe you can deepen your relationship with God. Maybe you can inspire others... imagine that, someone trapped within a cage inspiring those who are able to run freely around it.

And if you are one of the ones able to run around it freely, don't take it forgranted, because at the moment you least expect it a cage could fall on top of you. And then what? What would you do without your job, without your spouse, without your ability to cook meals, without your ability to drive, without all those things you do for fun? What would you do if all you had was a body that didn't work?

Inside every body is a soul. Use it well and you can move a mountain... no muscle needed.