More than a few times people have seen me on my rollator (they see me rollin') or wheelin' in my chair and have asked, "what surgery are you recovering from?"
"Did you just get your back done? Hip? Knee?" "You don't look sick to me!" And other fun things that you may have even heard yourself a hundred times. Never do people guess that it's a brain injury or stroke.
You'll learn more in the 'about' section, but I consider these CCM (+mixed vascular + HOD) brain lesions to be my invisible BFF because even though you can't see them (barring me lugging around MRI scans in my bag), they are always with me raising hell and other naughty things.
My iBFF also helps me in a lot of ways like finding inner strength, living in the moment, being grateful, seeking purpose...you get it. (BTW my friends it's not easy to do these things, but I find that "fake it till' you make it" mantra to be particularly helpful!)
I feel like by getting my story out there I'm owning it. Like, "hi I'm Erin, and I have an invisible BFF!" sorta thing. And most importantly, if I get my story out there, it just might help someone else...and that's what I'm all about.
Ever since my ability to handwrite in a journal was severely impaired, I started doing a private blog available to friends and family through Posthope.org that you can read in the blog archives (though it wasn't really until after a few weeks of being diagnosed when we finally started to get out of "survival mode" and more "what's next" so I could actually write about my ongoing appointments, cool things, not cool things, etc.)
I discovered this feeling I get from writing and web design is incredibly freeing and helps me deal; what more could I ask for in a hobby? Going public with my work, and creating My Invisible BFF has been very slow moving because of my rollercoaster ride of symptoms, but I hope you enjoy this eLo-made (and Squarespace powered) site!