Sunday, May 12, 2013
"The good fight is the one that's fought in the name of our dreams. When we're young and our dreams first explode inside us with all of their force, we are very courageous, but we haven't yet learned how to fight. With great effort, we learn how to fight, but by then we no longer have the courage to go into combat. So we turn against ourselves and do battle within. We become our own worst enemy. We say that our dreams were childish, or too difficult to realize, or the result of our not having known enough about life. We kill our dreams because we are afraid to fight the good fight."
Monday, May 6, 2013
I used to celebrate the entire month of March as my birthday month, so it seems fitting that instead of having just a crippled birthday, I get a Crippled MONTH. May is National Guillain Barre Syndrome Awareness Month and marks my anniversary of having GBS.
I think I got even cuter, even with AFOs.
I wrote this last year, on my 30th crippled birthday. That's right kids, I've been gimpy longer than you've been alive!
A lot of things float around on Facebook. There are a lot of facebook pages for "survivors" of Guillain Barre Syndrome. I struggle (frequently) with how to interact with those pages. I have a different view on all of this because I don't know how to be any different. I'm not a survivor, I just am. Everyone overcomes things in their lives and maybe we should view everyone as survivors.
At the beginning of the month, someone asked people to summarize their experiences with GBS in one word (see the cover photo someone created at the top of this post). I've spent the month's bike rides trying to think of one word that would do just that. I hated the words that others came up with - they seem so self-defeating. It can be defeating. I have felt misunderstood and it's hard to be in pain when you really aren't in pain and no one understands. It's hard to meet people's parent and walk like you are intoxicated. But all of those things are part of the human experience. I think that by labeling the experience with such negativity we allow it to become just that. I don't have a word. Maybe it is life-changing. But it didn't change my life, it is just part of my life.
And just because I like to take a stroll down memory lane, every year I pull out the scrapbook my mom made for me.
I do know that I HATED tilt boards. I had to tilt board for almost a year after I was diagnosed. Pretty sure I also still make this face.
I wasn't a fan of this either - but I did get Apple Jacks! Also, please note that my hair is rather cute in all photos! Thanks mom for making sure I looked awesome even when I was in the hospital. Maybe that's why I get my hair done before surgeries!
My first trip outside the hospital, with our family dog, Mork
(you read that correctly and yes I just aged myself even more. Good work on picking a dog name Mom and Dad!).
Nurse Laura! In the back of the scrapbook are all of the cards that people sent (you can see some of them on my crib in this picture). People loved me even back then!
I am truly blessed to have so many people who love me, put up with me banging my feet together and being cranky when I don't get what I want (THAT has nothing to do with GBS, just my own personal crankiness). Thank you!