Saturday, June 11, 2016

Using our gifts

This past week I was sitting in my van in front of my daughter's dance studio, knowing I had to get out and go to a meeting there.  The problem was I was in the middle of a huge storm - rain pouring, lightening everywhere.  Minutes earlier the thunder had been so strong that my van shook.  And I hate lightening.  How was I going to do this quickly?  How could I possibly move quickly enough to escape the lightening?  I opened the van door where my walker is.  Normally I would get out of the van to retrieve the walker, who I named "Bart" years ago.  But this time, with the lightening seemingly on top of me, I decided to try to pull Bart out while still seated in my van.  I reached back, grabbed Bart, and slung Bart to the ground.  Bart was still collapsed like a baby stroller so while still seated, I opened Bart.  Then I determined not to turn on my Bioness robotic devices, which send signals to my legs, until I made it past the open area of the parking lot, convincing myself the Bioness signals would attract the lightening. With all set to go, I "launched" myself out of the van, and walked a bit to the covered sidewalk where I then turned on my Bioness devices and went into the meeting.  Yes!  I made it!!

6 years ago that would not have been possible - getting Bart out of the van like that without throwing myself out at the same time... and walkng a bit without the Bioness devices or some braces on my legs.  6 years ago was the last time I went on steroids for an MS attack.  Those happened to me every few months - all of a sudden my MS symptoms would get worse.  50 feet was all I could walk and each attack made things worse because I didn't fully recover. In late July, 6 years ago, I started taking the drug called Ampyra, designed to help with walking, and since then have only made forward progress, no MS attacks, still using Bart to walk and wishing I didn't need Bart, and still dreaming of running without Bart.  In the 6 years I have regained a lot of balance which means I can pull Bart from the back seat while still sitting in the front seat. It means I can walk around a track, I can stand straight, I can go to physical therapy twice a week and walk up to 2.0mph for 16 minutes on the special treadmill there...  I am more independent.  I can also write again, having almost lost that ability, and I can ski without having my hands basically taped to the outriggers that I use to ski.  Independence.  I can wiggle my toes and when I think I am losing my balance, I can push my toes into the ground and regain that balance.  This is relatively new - using my toes for balance.  The things I didn't realize I had lost - I have so much of them back and there are probably more things.  I am stronger overall and though progress at times seems slow and I want more now, I am still making progress and that, after about 20 years of decline from attack after attack after attack, is, in my mind, when I sit back and think about it, a miracle.

Yesterday I watched some of the speeches given at Mohammad Ali's memorial service, after his recent passing.  I was struck by those and felt I related.  Billy Crystal said Ali built bridges instead of walls and that is important.  As we face things in life, it is important that we build bridges, and in my small way, I hope I do that by reaching others to tell my story.  I was talking to a friend recently about my blog, and how although in a sense it has been my diary, it has also been a mechanism to reach others to tell possibilities, along with frustrations, and to consider how I move forward, how I live life to its fullest and as Ali did, how I can build bridges by telling my own story.

I listened to what Bill Clinton said about Ali:

“He decided that he would not be ever disempowered.”  

“He decided that not his race nor his place nor the expectations of others — positive, negative, or otherwise — would strip from him the power to write his own story.”
“May not be able to run across the ring anymore. May not be able to dodge everybody and exhaust everybody. And he’s bigger than ever because he’s a free man of faith sharing the gifts we all have.  We should honor him by letting our gifts go among the world.”

When I shook Bill Clinton's hand in meeting him once, and couldn't think of anything to say, perhaps saying nothing was fine.  Perhaps he sees people with their own gifts, just as he saw Ali continuing to give throughout his life.  We all do have gifts to share, and we all can build bridges.

And so in this time, these 6 years, I think I have been sharing my gift - the gift to tell my story of the seemingly impossible - how I started from nothing and have come so far.  This blog shares my story.  And I hope that moving forward, I have more to tell, and more bridges to build.