Hey! Remember me? I sure hope so!
I know this post is way overdue… actually, it’s ri-donk-ulously overdue! I could tell you all the nitty-gritty and blah, blah, blah that got in the way of me sitting my ass down and cranking out blog posts over the last few months…but, I’m not. Wait, on second thought, I might pick a few juicy nuggets to share in future posts. I mean, I haven’t been sittin’ around in my flannel pajamas waiting to win the lottery for shit sake! GGB has got some exciting stuff going on!! If you follow me on Facebook, Instagram, or Twitter, you’re pretty up-to-date on GGB. If you’re not following me on social media…WTH? GET. WITH. IT. and follow me!
Soooo…. Let’s just start here, now, today… with the big question being “What got me back on my blog after so long?” Okay, let me tell ya a little story. Little? Ha ha!! I know…I’ll try my best!!
Grab a snack, get comfy, here’s my story. It was just like any other morning in my office, I was sitting at my computer with emails open, Facebook up on my iPad, and text messages waiting for responses on my iPhone, and sipping on a big cup of coffee (duh!!), when I got a call from a friend. As we chatted, she asked me what I was up to. I said “Oh nothing much. Just reading some emails and I have a few calls to make.” We finish the conversation and hung up. As I turned back to my email…I heard a voice. It said “Nothing much?? Why the hell did you just downplay what you’re doing? You made it sound so meaningless. Gurrrl…wake the f*ck up! All that Business is important and it’s what you do now. This stuff is not a “hobby” filling your day in the dungeon. It’s your path and you need to realize how important it is to keep walking it. So, set yourself free from the bullshit and get it together Maria!! > KA-BOOM! < That voice was my “inner bitch” slapping the shit out of me! WOW!! I sat for a long time and thought about it. The words sunk in. I got it.
What a huge EPIPHANY! I suddenly understood how horribly off track I had gotten in the last few months!! This blog, and many other GGB projects, have been pushed off the list because they didn’t feel important enough to me. It’s easy to ignore your ideas and projects while they slowly disappear into the background and fade from your vision. The vision you “see” with your heart and soul. The vision you should never let go of… and I did.
My days consist of hours of phone calls with new folks and veterans in the LHON community, texts, emails, interviews, Skype, tweets, FB posts, AND I continuously start writing blogs to share (which I currently find I struggle to finish). What does all this add up to? Does this work I do have a name?? Yes. Yes it does.
I’m an LHON Advocate and proud of it! For the last 2 years, I’ve been helping others who are newly affected, carriers, and loved ones comprehend this life. I strive to bring awareness to Lebers Hereditary Optic Neuropathy and the experiences living with this rare mitochondrial disease. I shouldn’t downplay this work like it’s nothing! Girl Gone Blind, and all the things it represents, is probably one of the most important jobs I’ll ever have!
Stay tuned….. xo
Welcome back. Hmmm. Girl Gone…
Thought you just dropped the Blind part. LOL
Your email caught my attention and I had to think about, Girl Bone Blind.
Ok, I’ll be listening.
Have a great day.
Oh Yes! Your job is huge! But I would say you are always on duty as an amazing example of living blind and being a spokesperson for LHON! Don’t beat yourself up… Just continue networking and reaching out to those who need your voice as you have been doing.
I’m SO glad you’re finally getting how special and important you really are. High five! The world needs you as an active participant because you’re a light-bringer, laugh-starter, and comfort bearing leader for a cause.
as usual, maria, you articulate so well and there is a strong message of strength and non whining…you jumped right in there after a few “moments” of acceptance ….and have exceeded yourself….from a big big fan
Maria! Girl NEVER downplay what you do… you are an inspiration to so many… it’s so darn important. I saw this on FB and thought of you.
The beauty of life does not depend on how happy you are, but on how happy others are because of YOU.
You help people every single day and don’t ever forget that GGB!
Maria.you are such an amazing LHON Advocate and all around inspiration to every one who is lucky enough
to cross your path………….YOU DO IT ALL and I am proud to know you
Much love to you and your courage and humor