I came across the video while perusing Facebook around midnight. You know, wasting time when I should be getting valuable sleep before an active next day with my son, and I saw the title- Care and Cure 2014. I’ve wanted to go to the Care and Cure benefit for a few years but haven’t put aside the money. This year we are going and tears spring into my eyes I’m so happy. Obviously, Epilepsy is close to my heart but more importantly, I’m a Mom now. Pediatric Epilepsy rips me in two. I don’t even know how to put my jumble of emotions into words, or if I even can since the keys are already a swimming blur… So I watched the video once, twice, three times and then just kept pushing play over and over again. Sitting on my couch, one light dimmed since my boys had gone to bed, I cried and I cried- just one more time, just one more time- until I could only see watery waves of black and white.
I wanted to share it with everyone. And I sat there thinking how do I do that??? How can I make everyone see, more importantly, feel what it does to the lives of these precious beings the world is supposed to protect and nurture??? I don’t know and I can’t. I feel frustrated, and like everyone who has a cause close to them, I believe mine should be the most important and urgent. And people have to push this cause through the maze of others, into the forefront, on its knees, begging for a hope, an optimism, a proximity to a cure. Make it seen, make it known, make the crippling path of these fragile lives count… I thought my chest would explode.
So I went to bed that night lost and sad, for lack of a better word, and woke up the next morning and watched it again. Same reaction- the first part of the video is me, the second part could also some day (heaven forbid) be my life. I needed to sit down and write. Here I am.
Watching the intro to the video, hearing the snap and crackle, like the sound of old lights in movies in a dark basement, resonated with me. And then watching the words “pop” in random order as they tried to unsuccessfully put together a message made me think; this is my brain during a seizure. This is it- neurons misfiring, popping, sizzling as they find the wrong receptor and shoot into space. I’m trying to catch them, bring them back to their homes, with arms rigid and flailing, just like the neurons- lacking success.
Those few short seconds of the video mesmerized me.
Then television fuzz, and the end of a storm. Drained. (Sounds/looks about right.) I could relate until all of a sudden chirping birds and his little face appeared, head bobbing with a stream of drool dangling from his lips. That’s where I lost it. All I wanted to do was reach out and uncurve the bent little hand rubbing his eye and hold it open, flat, in between my warm palms. Make whatever possible piece of him normal. I wished I could sit next to him and prop his head against me and allow him to just stare at the world, not grasp brief snippets with each labored bob, but I think to myself; would he even process what he sees? Can he? To look in his dark eyes and see if there is yet something brighter behind them. Probably not… and since his body’s never truly been his own (he was diagnosed at 4 wks) he’ll never know the difference. I’ve been robbed of minutes. He’s been robbed of days, months, possibly decades. And so has his family.
They all popped up- those permanently traumatized, those struggling but living life and a few who’ve been blessed to come out on the other side but not before experiencing the fear of uncertainty and the absence of normalcy. That’s all any of us, especially children, wants- certainty and normalcy. Who doesn’t want to find peace (in the bubbles), leave their mark (in sidewalk chalk), jump (into a pool of toys) and be caught?? The simplest pleasures…
I’ll probably watch this clip a million more times tonight, tomorrow, in reflection, and simply whenever I ponder the mystery behind our commonality- my Epilepsy those first few seconds in black and white, theirs in a whirl of indistinct color. I hope one day Ari, Chloe, Rowdy, Nico, Johnson, Audrey, Charlie, Tiger, Alex, Natalia, and Anabella will see rainbows when the sun shines through their bubbles, leave marks of inspirational accomplishment for others, and jump without hesitation or needing to be caught.
I wish for them these minutes, those moments… and for all of us to care enough to cure.
I just wanted to leave you a short note to tell you how INCREDIBLY brave you are not only going through life affected by epilepsy, but more importantly, choosing to write about it and share the information with the world. It’s taken me almost 20 years to recently start my blog about my epilepsy, and I can only hope that I day I can hold my head up and say that I’ve been as brave as you are. Thank you SO much for sharing our experiences with the world!
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Thank you for the encouragement!!! You are just as brave in sharing your journey with others and I can’t wait to visit your blog! PLEASE keep in touch and I’d love to share one of your blog posts on my Facebook page if that’s okay with you!? Only if/when you’re comfortable- Let me know 😄
This post, along with every one of yours, makes me put my life into perspective. I used to take my health for granted to the point where I would push my bodily (cerebral, unfortunately) limits carelessly.
You’re posts have been a huge part in my inspiration and motivation to redirect my life and be the best version of myself. In fact, my journey to NYC this summer as an intern resulted in part of reading all (ALL) of your posts. Hopefully I graduate next year, and next on my list is UCLA law school–I’ll be sure to reach out to you when it hopefully becomes a reality.
I wanted to reassure you how successfully you are spreading the vision, endangerment, and insecurity of the life of an epileptic. I may never feel the magnitude of your peril, but my heart feels the pain through the tug in your words.
Lastly, I want to bring you comfort by letting you know you have one more person in your army to cure the biological and emotionsl effects of epilepsy. I pray for your cause, along with many others, every night. I promised myself, when I reach the capability, I will contribute to your cause financially. Hopefully soon I can give time to these boys and girls and make them realize–if they haven’t yet– how much they’re lives matter (despite any condition).
Please don’t stop posting, you’re accomplishing what you set out to do, and I’m living proof. The world needs more of your essence.
THANK YOU. 💜
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Thank you so much for your thoughtful comments! I truly appreciate your encouragement and I’m humbled by it. It’s ironic, your timing, because I really needed that boost of support right when you commented, so I can’t tell you how much it means to me… so you see- we’ve provided each other with inspiration :D
I wish you all the best in finishing college and I can’t wait to hear if you land at UCLA for law school! Please keep me updated as to your progress; I would love to hear how your journey continues, and once again, thank you for taking the time to read my posts. :)
All my best,
And THANK YOU for the motivation,