We were with three other couples, and randomly enough, one of the couples knows someone with epilepsy, another couple (us) has epilepsy, and a third couple's child is currently testing for newly emerging epilepsy… 3 out of the 4 couples somehow touched by Epilepsy. And that's not why we were together... the conversation unexpectedly ended up there.... Continue Reading →
Here's the video we played at the rollout of Orange County's Care+Cure program at the gala. UCI did a wonderful job and for those of you that don't "know me" very well, this might help! :) SO proud and privileged to be able to represent the Epilepsy community in spreading awareness. I am surrounded by so... Continue Reading →
I didn't need to see it. See them. I'd already lived it, or at least my own version. Because if anything, I've learned we're all different, but not in the pain. That we share as deeply as two strangers who have never met but live in the same body, can.
I stood there, arms bracketing the laundry hamper, head hanging and watched the puddles form against the lenses of my glasses. Heartbroken tears cradled and collected. Familiar. I'd gone 5 whole days seizure free and was shooting for that elusive full week of reprieve but it wasn't meant to be. Last night's episodes rocked me-... Continue Reading →
Yep, I know. I know he is. He always is. My sanity, my “life coach” on days I can’t see straight for being so depressed, my normalcy, my savior along this journey... And so this post is a letter to him. To all the unsung heroes and caretakers that bear the brunt of a disorder/disease they “acquired” by association and through……….… love.
*I wrote this last Wednesday night... Before today, through all of this, I’d really only cried- like balled my eyes out, snot from my nose- one other time. I’d had too little to eat and a couple drinks celebrating my birthday with 2 of my girlfriends… the stress melting as I sat back and... Continue Reading →
I needed a little liquid courage to put this on paper. (Besides it’s always much grittier, less polished and pretty, like real life.) But he said no. Nobody can know...
I sat there watching it flutter ever so slightly… down, up, down, up… Brief inhale, long exhale. Quick to capture the air, slow to let it go. So soft and sweet I almost held my breath for fear the motion of his chest would stop. All would be paralyzed. I’d panic. Remember to beat, my heart.
...there are byproducts of living with this disorder for which I'm grateful and putting them into words reminds me of something we've done on several Thanksgivings at my parents' house. We picked tree leaves and kept them in a basket by the door- at some point before dinner, each person would take one leaf and write something for which he/she was thankful, then we'd go around the dinner table and share our leaf...