Tuesday, August 24, 2010

Cinderella?


I have adorned the nick name Cinderella these past few days with trepidation as well as pride. I am making plans to attend the FA energy ball. (Link is on the side)
The trepidation is the lack of transportation down to Tampa. Plans are up in the air and I leave in two days. A bit intimidating, to say the least.
On the flip side, there is extreme pride when I think of being involved in this fight to win the war of finding a treatment or cure for FA.
So I guess I come by the name Cinderella honestly. I imagine she felt a bit overwhelmed as her step sisters made it nearly impossible to attend the ball. She didn't give up and nor will I. Although her dress was waved by a wand and she rode in on horse and buggy, I will wear my Goodwill gown and wheel in my chair eager as she was, for a prince. And for me, a prince would be nice but a cure would be the best...before the clock strikes midnight, here I come USF.

Tuesday, August 17, 2010

strangers.



We were complete strangers. That is, until this weird, invasive and all encompassing thing called Ataxia entered our lives. Which certainly was not invited. We all wanted this "guest" to know that although it had invaded our lives, it was not going to control us. It is strange how something so awful, so obtrusive can be the very thing that "ties the bind". Ataxia is a common thread in our lives but it is not who we are. Ironically, without the diagnosis, I would never have loved Becky and Deb like I do now. A six hour road trip to see each other wouldn't become a memory. We wouldn't talk for hours over decaf coffee or order KFC and eat at the beach, laugh at our failed attempts at love or cry together knowing this intruder of Ataxia robbed the life of someone we loved.

All of us were strangers.

Or what about the stranger who saw me stuck in my driveway during one of the many blizzards this winter when I attempted to roll my trash can out to the curb? He must have spotted me and turned his truck around, only to push my 300 lb. wheelchair in the garage. I hardly uttered the words "thank-you" when he hopped back in the cab of his truck and drove off.

He was a stranger to me.

I attended a funeral of an older man, Fred, who died of cancer. Fred touched my life. He loved Jesus and everyone who knew him, knew that. We shared many conversations on the phone, some that lasted more than an hour, before he died. I grew from Fred's wisdom and admired his faith. I miss our talks. I sat in the back pew in the chapel for his funeral. I sat next to a lady I had never met before. Fred's songs he chose to be sung at his funeral hit me hard. I wept. I couldn't control it. The lady next to me gently placed her hand on top of mine and squeezed some love into me, reminding me it was going to be okay.

She was a stranger.

I flew out to California to visit my friend. And my flight out there was delayed. This made my layover in the Minnesota airport a total of 5 minutes. No small feat for a girl on a scooter that has speed of a tortoise, with a service dog that poops in the carpeted terminal and has to go the distance from gate A to gate Z. Fortunately, the plane waited for us. The ENTIRE 757. I discovered that my seat was GA- the middle of the aircraft. It was at that point when a man seated in the aisle seat of first class tapped me on the shoulder and said, "have my seat, I'll take yours." He wouldn't take no for an answer and proceeded down the airplane. Miles down to seat GA. So there I sat in first class and treated like a queen.

A gift from a stranger.

Maybe my life is filled with unique situations but I am not convinced, as I once was, that we are surrounded by strangers. These people tell me otherwise, in those divine moments, they became my friends.

So as much as I hate you, Ataxia, I embrace you.
And the moments I shared this weekend with Becky and Deb will forever be etched in my mind.
Although FA has taken away a lot from me, it has given me so much more.
And for that, I am thankful.