It Takes Hope
Two words. Look beyond.
I've been repeating them. Over and over. It took me a long time to be able to really do this. Those two words freaked. me. out.The thought of my future was scary, overwhelming and unknown. It still can be. But I no longer want to vomit when I hear those words. I don't know or even want to know what's ahead. When I was first aware that my body was becoming my enemy, I tried desperately to hang on to my faith. I had no idea what that looked like but it sure sounded good. In the back of my mind I remember wanting so badly to have the faith of a giant but truly feeling the size of a Nat when it came to expectations of my future. I needed to look beyond.
I often tell my clients that the head and the heart are only 12 inches away. But my heart is miles and miles away from what I know to be true. Facts verses feelings. FAITH. Besides being a lot of "F" words, I desired to be filled with hope and not fear.
Years ago, the acronym of FA-ITH (It Takes Hope) began and I didn't even know it. All these years, my heart was catching up with my head.
This entry doesn't mean I have arrived. Far from it. But it does mean that on my good days I am able to look beyond. And thankfully, I am in a chapter in my story that the good days are outweighing the bad ones. I'm looking beyond with expectations.
In order for me to hope for the future, I scroll through my photos and remember where I've been. And this one reminds me that it will be worth it. If not today, the end of my story.
About a year ago, a friend of mine created a logo that I had printed on t-shirts and hoodies. It was my intention to raise awareness for this rare disease and in the process donate the money earned to FARA. (Friedreich's Ataxia Research Alliance) The first campaign was embraced by my close friends and family. Mostly because I begged them to buy a hoodie. The second campaign I promoted it through a promise. If I sold 150 FA-ith t-shirts and hoodies, I would tattoo the logo on my body. Honestly, I set this goal thinking it was unattainable. But on March 11, I had to fulfill my promise and get inked. I gathered some friends and we made the trek over to Chicago so I would permanently be reminded to look beyond as I have the FA-ITH to believe that It Takes Hope.
I told my friends that I was going to kiss the first stranger that asked me about my tattoo. Well, last week the sales lady at the Outpost in downtown Holland was the first person to ask me about it. And poor thing, I gave her an earful. She was so kind to listen and even knew my story a little as we have a mutual friend.. :) Although I spared her from a kiss, I gave her a hug and thanked her for asking.
I am continually wrestling with the tension of knowing that I need to look beyond my circumstances. But I am constantly tripped up in the present. The losses are great. And constant. But it's in the middle of the pain, that's real. That's raw. That's life. Mine is a life with FA, unfortunately. But when I look beyond, I see having FA as fortunate.