It's Neither!

Sam and Al on Quantum Leap

I'm tired of so much. I'm tired of the question "do you have MS or MD?" 'It's neither! It's CP, not that you need to know.' (I don't really say that, it's just what I feel.) I got asked that today for like the 7th time. I'm tired of little kids asking why I'm in a wheelchair. I just want to answer: "I can't walk, ok. Want me to have to admit it to you? Because I won't admit it to myself, so why should anyone else get the honors?" I don't wanna talk about it sometimes.

I had a hard day today. There's a term I've heard on the internet called supercrip. And you know, some days, I just don't feel like being the supercrip. Today was one of those days. No big deal normally, I could just slink around the building, and not draw attention to myself. Those days are gone, my friend. Never again will I have the sweet pleasure of entering a room without drawing attention to myself. :-(

Usually, I'm fine, and I can do all the sweat and toil it takes to get ready to go out, and to get around the church building, and to field way-too-personal questions from people. Either deal with not knowing, or get to know me and I'll tell you everything. :-) But when they just want the soundbyte, and otherwise don't talk to me at all, sometimes it feels less like they care and more like they're just using me for information.

I'm tired of going for a door at church, and having MANY people try to help me. I want to say it's 18 people, but really it's more like 4 or 5. Still, that's a lot. It's a door, how do they think I get around the rest of the week? One person helping would be fine, not that I need it on those interior doors. Now, the outside doors are worse, though, because there you've got the combination heavy door with bumpy threshold on the ground. Not to mention that it's one of those things where you have to go through two successive doors just to get in the building. I have to use both hands to do a minor wheelie to get my front tires off the ground in order to get over the bumpy threshold. That's easy, unless of course, I'm holding a door that's so heavy I can't push it out at all to make it swing open for the 2 seconds it takes to pop that wheelie to get over the bump. So, I almost fell today trying to get into church. So embarrassing!

At least I figured out that if I go backwards up the ramp in the parking lot that it's possible to get up that steep hill. That ramp is too steep by ADA standards for a self-pusher in a wheelchair. They probably don't care, though. The only people to use that building are those in motorized chairs and those being pushed. No one's ever had to go through these hoops before like me.

That ramp isn't actually so bad. The worst part is when folding chairs are set up with too narrow of an aisle for me to even enter a room without people and chairs being moved to make space for me. That happened TWICE today!!!!

Brian and I have been going rounds this weekend over something as simple as who should hang up the clothes. Because I just can't do it. Not only am I too short, but the doorways into the boys' room and into my closet are too narrow for a wheelchair. I just can't do some stuff. He says I should make Alex do that too. Alex is doing so much. He already does all the grocery shopping and all of a lot of other stuff too. I feel so bad for him.

I feel awful that I have to make Alex do sooooo much. He's really not tall enough, but still he stands on our 2 step ladder and dives down into our washing machine repeatedly on laundry day to get the clothes out so that we can dry them. He's really too short for it, he has to stretch so much to reach every last sock, but it's the only way to wash clothes.

I'm just not in the mood to be supercrip today. I wanted to stay home.