Epilepsy Awareness Month. Day 9!


As a part of Epilepsy Awareness Month, @lifeelektrik issued a 30 day challenge encouraging us to share information, pictures, and pieces of our personal stories themed around daily topics. It’s a clever and fun challenge that I assumed would be easy.

We’ll ignore the fact that the last thing I need right now is another challenge and will instead go right to the excitement I felt by the prompts and the idea of sharing pics of my cute kid. An added boon, I thought was that people can see that epilepsy doesn’t have to mean unhappy!

On my first attempt, 8 days in mind you, the challenge of the day was to write inspiration. Cool theme with a positive edge. I liked it! I was pumped to spend some energy focusing on big picture, happy purpose ideas and not just the day to day getting by. I figured, I have tons of things that inspire me, I got this…

….until I tried actually writing.

According to Google, inspiration is something that makes someone want to do something or that gives someone an idea about what to do or create.

I began to realize how little inspiration I have. I mean, I am constantly surrounded by people and miracles that amaze, and more so, I’m aware of them. Plus I’ve lived most of my life as and actress, dancer, talker, teacher, lulled and pushed by inspiration that I was, at one time, able to find in any and everything, from a dust bunny floating through a sunlit room to grand cathedrals and excellently executed musicals. But, I realized, I am undoubtably not in a place that leads to creating anymore, I can’t honestly remember the last time I was. In fact, I’m down to bare bones. No more acting, no more teaching, no more shows, no more song writing, no more creative playdates and parties, no more Pinterest pages and Etsy stores. I can barely keep a blog going.

All of a sudden inspiration as I once defined it, as Google defines it, was not just evasive but missing entirely. So, as I was beginning this post, I was writing and rewriting, sounding more trite and more flowery, as my mother used to say, with every iteration, but I couldn’t land on any true segment that didn’t sound like a corny, blurry meme. 

I began to see that how I define my life, how I perceive it, and therefore how I describe it is like being half of a newly broken island that doesn’t realize it’s been cleaved in two. An island that feels the tide tearing apart it’s foundation and  as it hurls water and force on the newly severed beach but can’t take cover or move to ease the ripping of the seams. I see the other half, understand the separation, but I don’t adjust. I still feel the same undercurrent. I still use the same rhythm as when we were whole. When now, being whole is up me alone, and not the same thing at all.

Words don’t mean, things don’t feel, like they used to before his diagnosis. To answer, “what inspires me” is not just loaded, but flooded with every tear, smile, fear and victory we’ve been through in the last three years, which were nothing like the first 40. And those weren’t all easy!  It’s to acknowledge and define how I I’ve been altered down to a cellular level by this experience.

System overload! Pulverized by circumstances bigger than I can really handle, and way beyond my control, inspiration is a spiritual tool I can not truly muster, right now.

What could I possible say, but, “he does”! HE inspires me! Of course he does. I am in awe of him every day! But watching him suffer and lose parts of himself, lose the right to live the life he came into the world with, to this stupid “electrical problem” that no one can find a root or cure for is too cruel a mechanism for inspiration. It’s like the side effects of his meds. Sure, they take away some of the seizures which gives him back his life. But, they also take away his ability to feel like himself, to feel right and good, to function and regulate without a Hulk’s amount of self-discipline and pain. They also keep him below any level or standard despite his cleverness and willingness to learn. Yet again taking away his ability to really live his fullest life. At least that’s how it gets written with the old words. Is his suffering worth the inspiration? Hell no! Are the side effects worth the meds? We don’t have a choice. We don’t get a say in that one. So we’re grateful and we wait for a miracle, and we cherish all the good.

But are we inspired? No.

I know it’s maudlin and probably over dramatic, not to mention silly, to pick apart the semantics like I have nothing better to do but play with words. But I realized how important this is to me. How often I am at a loss for just the right phrase to illustrate how our story has impacted us, how it’s changed us. It’s all duality. Yes it’s hard, but it could be harder. Yes he’s at school, but no it isn’t just needing accommodations. Yes, I’m a worrier, but this is real shit to worry about. Gratitude and resentment. Acceptance and Denial. Love and Fear and more love and fear! I know beauty and magic and gratitude in depths I didn’t know I was capable of, and that’s important. It’s something taken and something given at it’s purest point. It’s the human experience. I see it. But how do I really describe it? And to go so far as to denounce inspiration? That’s a pretty bold statement, even for me.

I have to say, it surprised and embarrassed me how this topic threw me. Buddha is in second grade and can tell you what inspires him. Ladder number 9, Captain America, hockey players. He feels goole-definition-inspired by these people, reflected in every game, every costume, almost every breath he takes. I figured inspiration would be easy. I have countless examples of people and experiences that propel me forward into hope and happiness. Buddha’s positive self-talk, the fact that he has NEVER cried at any of the hundreds of blood draws he’s had, whereas I had to literally be dragged in and held down until I was in my twenties! I wanted to write about the parents I know who love and encourage their kids to be exactly, uniquely, who they are. For people who can let go and smile and live! For teachers that build self-esteem and still manage to teach weird math that I can’t figure out. I wanted to write about the way the sun rises over the center of Philly, right over William Penn, and slices the building tops with lego-orange fire swords before blurring out the sky into a cool blue, and the ridiculous good fortune I have to watch the awakening from the 23rd floor, corner condo we just bought. I wanted to write about my husband’s bizarre ability to take emotional issues and rise above them out of sheer faith in the steps of knowledge and action. I’ve never seen another human shift their perspective, let alone behavior, more routinely and under such pure and good intentions as my husband does. He makes it seem so easy to change. It’s actually kind of irritating.

I wanted to write about my mom and my sister and all the other parents I know forcing themselves up this endless mountain of pediatric illness.

But still, I couldn’t find the “inspiration”. None of it made me want to get up and start a charity or volunteer or write a book. None of it created a magic bubble idea capable of curing him or anyone else. I can see it and I believe it, but I can’t feel it. I can’t find the words because the key word isn’t right. I don’t have the luxury of leaning in to inspiration.

The most I can muster now is motivation, even empowerment, but not inspiration. I feel motivated by the strength and goodness I see in people going through their own trials, by the soft emotional fill of a sunrise, by the powerful energy of good vibes and offered prayers, by my husband and my family. But inspired? No. Inspired is for dreamers. There isn’t room here for dreaming. At least not right now. Like life and his condition, it’s deeper and more complicated than inspiration can hold. It can’t be addressed in the same perimeters. It doesn’t use the same vocabulary. I hope and pray and watch and learn. I do and I wait. But I don’t dream. I am not inspired.

The impetus is always to react never to initiate, to create. That was taken. He’s still here and with us so more was given than taken, but I was not left with the capacity to be inspired.

I can not find the words but I am not despondent, I have not given up! I am re-editing myself and my expectations by trying to see the moment, acknowledge my feelings around each situation as clearly as possible. I am hopeful but realistic. I am spiritual without being naive. I am moved by the passion and goodness of people pushing that pain-in-the-ass rock up a mountain they know will never stay. I am motivated. I am one bad ass momma out to make it right for my kid.

I may not feel inspirited, but I can recognize beauty and feel happiness. I feel such love as I’ve never known! But the other feelings? The pain? They’re too big for me and wash out things like inspiration. Yes, the sunrises help. Family helps. Being pleasantly caught off guard by a simple, kind gesture from a stranger helps. These things keep me fighting, and they keep me soft. They keep me tethered. The keep me present. They remind me that without loss there is no gain. Without ugliness there is no beauty. They give me hope that it’s all worth it. That, in fact, it just might all be beauty. It might just really be all semantics.

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