Wednesday, February 8, 2012

This day

Sometimes a day, though just another mundane day, seems a bit different than just another mundane day. Today was one of those days.

I didn't wake up in the best mood because I had been up at least 4 times with leg spasms last night. Leg spasms are terrific. My whole leg will actually jump and then may shake as muscles cramp. It hurts in an annoying way that is hard to describe. The only way to alleviate it is to get up and walk. Getting up 4 times to walk is a bit irritating.

My first stop this morning was 45 minutes from my house, across town, through rush hour, to get a new back for my wheelchair, and NPR was having their fundraising time - seriously, today? Getting a new wheelchair back should have been exciting because it's a solid back and the handles behind the wheelchair are positioned, bent in rather than sticking out, so people are less likely to grab them and start pushing me without asking. Since I now have this strange sensation that I need to sit straighter, I need a wheelchair back that is straight. The problem? It was about 10 feet into the store, and it's easier to grab my walker than to go through complete wheelchair assembly right now. Times have changed. By the time the wheelchair was ready, my legs were ready to walk - Ampyra kicks in at about 10:30 and says, "Walk!" It's a strange sensation where I can feel my leg muscles turn on and stiffen a bit.

But I had another 35 minutes of driving back to work in this irritated state of having to get up 4 times last night and then being ready to walk but sitting in my wheelchair. As I drove, I decided I didn't want to walk loops at work today - I've been a bit "down" lately and need some kind of change. So forget the wheelchair today - no more wheelchair assembly for me! I found a parking spot, got Bart (the walker) out, and was off. I think my balance must be improving because taking Bart out of the huge van used to be impossible.

I made it into work without a problem - I was stronger than the last time I tried this. But then I had to figure things out... with a walker, there are new obstacles. I told a friend, via computer, than I had walked and was discovering obstacles and she said, "like what?" Interesting as she has a disability, but doesn't use a walker. So, here are obstacles. To go anywhere fast was not an option, and I had to determine how much energy I had. Getting coffee, carrying coffee, getting anything, carrying anything - difficult. Imagine having to hold onto something at all times, only be able to use 1 hand/arm, and still not be quite steady. Simply going to the bathroom was just different, because there are doors involved. The biggest obstacle had to be my office chair, which has wheels and swivels. I take my leg braces off when not walking. Doing this with a rolling, swiveling chair was comical.

The whole day was one of those where questions are asked and I answer. When I turned on my instant message part of my email to ask someone a question, a few people saw it. "BETH!!!!!!!!!!!! Can I send you something and get your thoughts? BETH, did you know..... BETH... what do you think? BETH... what should I do? BETH... do you think I should do this?" It was one of those days.

Elevators! Going home, of course the furthest elevator popped open. I wouldn't make it in time. I was tired. So I lined up Bart to point toward the elevator and got in almost a race starting position...

On my mark, get set, reach behind me and push the button, ... go go go ... ding! (elevator opens), go go go... ram Bart into the elevator opening just in time. Ha elevator! I win!! Wait. Hit 1 to get to first floor. Start twisting as elevator is moving. Ding! Twist twist twist... ram Bart into elevator entrance again. Someone should have videotaped that part of the day!

Whew! Back to the van. There's a short area that's a bit steeper before the parking area. At 5pm, I was tired yet determined, and I made it down that and around to my van. I pushed up and got in. Then I had to move Bart to open the middle door, open the door, and maneuver Bart inside the van. Done!

On my way home, with NPR again fundraising (since I give, can't they fundraise when I'm on vacation?), I turned the 80s station on. This was the best part of the day. If 80s geeks recall, Mr. Mister (a group) had a song. And then, ..., "Life is a mystery, everyone must stand alone, I hear you call my name, and it feels like (pause), home." There it was - Madonna. So the mom in the big white mini van (that's me) cranked it and sang all the words, just like during the Superbowl halftime show, when her daughter retreated to her room at the horror of her mom's excitement.

Just like a prayer... on this mundane day, which started in an annoying way, trying to get through things, trying new things, testing limits...

And as I'm finishing this, there's a wood carving of Jesus carrying a cross right next to me. He helps me through all days, including the days where I feel tested and test things myself. And there's always a bright spot somewhere.


No comments: