"We all have those defining moments in our lives. Moments of great joy. Moments of unspeakable sadness and fear. We usually think we're alone. But if we look into the corners of our memories, we'll find them - those people who had faith in us. Those times when a grace beyond earthly understanding touches us. " (Byron Pitts)
I have used my wheelchair, for a few years now, almost everywhere except home, church, and Lori's dance class. At work I wheel into my cube area and then walk using a walker, 5-7 times a day, of various lengths. At church the distance isn't too far - if it's the evening I use my chair - and the people there are great and will ask me if I want a ride (which is when I sit and they pull the walker). Dance is a short distance and not worth loading and unloading my chair. Walking feels awesome - that's why I've always done it - though it looks like it's really hard.
I've been doing so well on Ampyra that I've tried a few tests. One test was to go to a work meeting in a different building. I used my walker there - some people had never seen me walk! Good experience.
Saturday Lori played a piano concert in a small bookstore in town. I decided to try experiment #2. That's where the quote comes into play. I was fearful - would this work? But I was also excited and joyful to think I could try this. And I did feel alone.
But I did it. One would think that doing that would result in great joy. Nope. See, these people hadn't seen Beth previously. And it didn't need to happen, but they seemed to flux between the pity mode and the "you're so inspiration mode," though most often, it was the pity mode. i was the person in the walker who looked like I really should be using a wheelchair. And I felt alone. I also felt like making a kind of public service announcement - "you should have seen me 2 months ago!"
So I'm in a bit of a strange place. There are invisible improvements that no one sees unless I demo how I can lift my foot. I stood up without holding onto anything, but I did that when only my husband and Lori were there, in front of our banister, in case I needed to grab it. Small things - yet big. But if I take it out in public... well... hard to explain... I don't feel like I've accomplished much.
I came home from the bookstore and Byron Pitts' book was staring at me from our bookshelf, as I was feeling like a failure. I opened it and found that passage. He was illiterate - I imagine many of his steps were invisible. He was ridiculed in college yet he had come so far.
And in that quote, I find so much. Great (invisble) joy. Unspeakable sadness and fear. Being alone.
But I know some awesome people who have faith in me, although no one knows what the end of all this will be. And I think, on Saturday, that was a time when a grace beyond earthly understanding touched me, pulled me through it, and brought me home.
And Lori - well, she did a great job on the piano. She always will, or I'll say that, because I'm her mom.