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.
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.
Lately, I seem to be fixated on getting older. And I confess that this thought process embodies a huge amount of fear. It certainly didn't help matters this week when I was with a good friend and her daughter at Walgreen's and was asked by the cashier if I was her mom. And she wasn't referring to my friend's 2 yr old daughter either...she was pointing to my 30 year old friend. That, according to my calculations, would mean I gave birth to my friend at age 7. Depressing. To say the least. I have reached that point that I am no longer looked upon as a sister with my younger friends or mistaken for being in college. Most of my friends have children who are turning double digits. Seriously. Depressing. I am Aunt Holly who looks at my oldest nephew, Alex, with tears in my eyes reflecting on the memory of teaching him to crank his arm in the air while bellowing "whoot, whoot" when he was only 1. He's going to drive next year. Majorly depressing. On the way home from the bank this morning, I saw an elderly lady walk out of her home. I almost slammed on my brakes to offer her assistance but quickly realized there wasn't anything I could do. So instead, I selfishly thought about my own life. And the following came out of my mouth as my eyes were fixated on this lady completely hunched over and walking with a cane, "Oh God, I can't live like this for that long". Fear immediately set in and I thought what life must be like for Doreen. (no idea if that is her name but it fits) "Please. Please. Don't let me live as long as Doreen". It is clear that she can't lift her head when she walks. Her body is in a L-shape. But the thing is, Doreen may be perfectly happy. Totally content. Completely at peace. And thoroughly enjoying her life. And that is what I am striving for. It is true, I may not always live in that moment. But the thing about being a grandma is the fact that I have lived enough life that I can appreciate it. Having FA is hard. But so is life. And we all live it. It's what I do with it, is what is most important. I have been asked by my favorite peeps down at USF if I would speak during the symposium in Tampa, FL on August 26 at the energy ball for FA. The doctors who are doing the cutting edge research for FA will be there. And Wings of Mercy has once again, offered to fly me down to Florida. So all these things that feel depressing are being molded into something that is amazing. Just like Doreen, I will keep plugging along...
I played hooky from work last week. That is what 90 degrees and 99% humidity in Holland, Michigan, will cause. That and a phone call from a friend with a boat. “Do you have to work this afternoon, Holly? We are taking the boat out and would love for you to come.” That’s all she needed to ask. Before I even hung up I was composing an email to the business office inquiring about the number of vacation hours I had left. It wasn’t a hard choice. Spending a sunny afternoon in a small, dark office with no windows or, enjoying the sound of water hitting the bough of the boat as we motor across Lake Michigan with a summer breeze in my hair? Hmmmm…let me think. I did the math and subtracted the four hours from the time I have accumulated for vacation. For such a time as this. Life is short. And I am diving in.
Growing up, I always heard the “older” people in my life tell me that when I get “older” time will go fast. They weren’t kidding. I am “older” now, and it’s flying by. I don’t want to miss it. I refuse to watch it pass me by from the sidelines. I don’t want to be just a spectator. I want to live like Donald Miller’s friend in his book, “A Million Miles In A Thousand Years”, I want to be IN the parade of life and not just watch it from the curb. I am the main character in my story and God is the author, I just need to surrender my will and be obedient to His will.
Although spending a day on the lake is high on my list of favorite things to do, it's not that easy. Without her knowing, she paid me a huge compliment just by her invitation. She told me that she debated whether or not to even ask me. She didn't know how I would be able to get on the boat but then she told me, “You’re Holly, for Pete’s sake!” I have no idea who Pete is but she is right. I am Holly, who uses a wheelchair and a service dog named Delsie, to get around. But a phrase I often repeat is, “If there is a will, there is a way”!
My will to get out of the office was going to make a way for me to get this 107 lb. frame of a body that has no sense of balance or any kind of coordination, off the dock and hoisted over the wall of a 24 foot power boat. Not to mention coercing my 89 lb black lab service dog who despises swimming, mind you, into the watercraft. What black lab doesn’t like water, anyway?
Needless to say, we did it. I was seated on the back bench as we made our way through the channel with hopes of encouraging Delsie to cool off in the water. I could have been in a commercial for the saying, “Life Is Good”. At that moment life was good.
Meanwhile, my friend’s athletic teenage daughter wanted to go wakeboarding. I was thrilled. I had never seen this sport in person. Water skiing, yes, but never witnessed a person securing both feet tightly into boots that were locked into a single board. My ankles hurt just thinking about it. This was going to be impressive. She popped right up on that board and we took off. For 20 minutes she breezed in and out of the wake and all the while maintained balance. She would even get “air” each time she hit the wake. Those jumps were followed by whoops, hollers and applause from her mom and me. She even tried a new trick that required moving the board horizontal to the boat as it pulled her. I am sure there is a name for it. In my book, it's called, amazing. Her athletic ability was stellar. She made this wakeboard thing look simple and for a brief moment after watching her, I thought perhaps I could give it a whirl; it looked easy enough.
I was enthralled watching this teenage girl live life so effortlessly. She was having a blast! I totally wanted to put on a life jacket and dive in the water to slide across the waves on a wakeboard, just like her. As I snapped back into reality, I remembered that walking by myself is not even an option. Seriously, Holly, snap out of it. But this time it was different for me. What normally would have fostered anger and jealousy in my mind became a moment in time of pure delight for me.
She was all smiles as she gracefully pulled herself back in the boat. “Did I get high in those jumps?” “Yea, you looked awesome!” We were both beaming from ear to ear with excitement. I offered her a high five, “Thanks for doing that. It was so fun to see.” And the honest thing is, I meant it. Although I wasn't the one doing tricks on the water on a board behind a boat, I dove in. I enjoyed the moment. I was happy that I was inhaling fumes from the motor of a boat rather than hearing the beep of another email alert on my computer at work. I was free. I was making a story.
The following day, I realized I might have gotten into my character a bit too much. In the morning when I attempted to turn on the light switch in the rest room, an intense pain shot through my upper arm. I actually thought, “I'm sore today from wakeboarding.” What the ?!?! I can't even walk, how the hobs did I wake board?! It wasn't until later that day while at work, I reached for something across my desk and felt once again, the tightness in my arms. This time I smirked and shook my head. I may not be able to wake board or walk, for that matter, ever again. But I certainly can be IN the moment. I can feel the waves. I can smell the air. I can touch the water. I can even sensationalize the aftermath of wakeboarding. Some may call these symptoms of a hypochondriac. Or label it Munchausen by Proxy Syndrome-maybe even people think I am a bit wacky. But I am choosing to be IN the parade. I don't want to let it pass me by.
In hopes of playing “hooky” again, I am entering this contest to help me write a better story for my life. For such a time as this. I don't want to be just the girl with big hair, in a wheelchair and a service dog. I know there is more to my story than being in a 2 X 2 office with no windows. Who better to help me figure that out than one of my favorite authors, Donald Miller?! Life is short and I am diving in. And maybe visiting Portland, Oregon along the way..no swimming, Delsie, I promise.
But me, I'm not giving up. I'm sticking around to see what God will do. I'm waiting for God to make things right. I'm counting on God to listen to me. Micah 7:7
Five years ago one of my sisters made me a sign when I moved into a new home that says, "never ever, ever, give up!" She hung it above my kitchen sink. And three years ago I moved it to my new home and placed it above the kitchen sink again.
For five years I see this sign. I read the words. And I carry on with my daily routine. Nothing changes in the way I do things because I read this saying. Or so I think.
I go through seasons in my life. Some really good and some really bad. And that sign still hangs above my sink. "Never, ever, ever, give up!"
I am traveling through a season in my life in which I love to read. I think I have four books open right now. I become so engrossed with what I am reading, I confuse the story with reality. I love the warmth of summer, my deck, a beverage and a good book. Pure delight.
In one of the books I am reading, the author quotes a passage from Micah 7:7. And I think of the sign above my kitchen sink. "Never, ever, ever give up!"
Believe me, there are days that I want to. Like the other day when I slipped trying to get a shirt that was hung on the top of my closet and while going down, caught the pocket of my pants on the joystick to my wheelchair which projected it forward wedging me further in the bottom of my closet floor.
"Never, ever, ever give up!"
That doesn't mean I didn't scream and cry. Okay, I wailed. I allowed the tears to fall and my frustration to run its course. I took a deep breath and hoisted myself off the ground.
"Never, ever, ever give up!"
Nothing is really happening. I'm not involved in a new treatment. I'm not flying in a private plane each month. I'm not doing anything.
Or am I?
I'm not giving up. Not ever.
I guess that's something.
Thanks for the sign, Christy. ..."I'm sticking around to see what God will do"...
*disclaimer: this photo has nothing to do with this post. I just like it. Two guys kissing me? Hello! But seriously, Brad and Brian and their wives are huge cheerleaders in my life. They make me feel as if they are in my corner and they won't let me give up. Never, ever, ever.
As each day passes, I am so keenly aware of how my life seems to be all about the wait. And then I'll see.
The wait and see.
You think I'd be a pro at this game. But a game is usually fun. Unless you're like my dad and despise board games. At times, FA can be fun. Almost feels like a game. And although I don't consider myself a competitive person, I want to win this game.
You're going down FA!
I want to play this card. The symposium of FA. http://www.curefa.org/EnergyBall/ Thursday, August 26 USF Tampa, FL.
I desire to sit amongst the smart people who are "rolling the dice" as they find a cure for FA. I hope to thank the people who own Park Place and Boardwalk as they sacrifice fiscally for the advancement in research of FA. I am willing to risk the humidity and travel for the sake of getting the "out of jail" card.
Because at times, FA makes me feel like a prisoner in my own body.
