Dec 3

Dec 3 Indomitably becoming

With epilepsy awareness month coming to a close and infantile spasms awareness week upon us I’ve been thinking a lot about my advocacy lately. Specifically about the nagging guilt I’ve felt for not posting as much about epilepsy awareness as I typically would this time of year. I questioned if I was burnt out, but as I looked at my calendar filled with CURE Epilepsy calls, meetings and recordings, I recognized that I was still moving full steam ahead - it’s just that the work isn’t always as visible. I know that doesn’t make it less impactful or meaningful, but still, was I failing this community by not strengthening my online presence? By not Tik-Toking and Insta-reeling with the best of them?

Then, as if he could sense my musings from 3,000 miles away, Bud aka Emma’s dad, sent me a piece of his writing that cleared the muddled lines in my mind like a doctor decoding an EEG. Epilepsy entered our life with the force of a CAT 5 hurricane. We fought against the nearly relentless gusts, taking small steps forward when we could feel the gales wane ever so slightly, but inevitably we would find ourselves overpowered once again. Until, eventually, it swept our daughter away forever.

My relationship with the epilepsy community has grown and changed a lot since we entered this undesirable club nearly 6 years ago. We fought for Adelaide and we advocated for all - and we will continue to fight and advocate - but admittedly, it looks different now. I’m beginning to understand that our fight and advocacy can change over time, as a coast line changes with each battering from a storm, and that is ok, natural even. There is no wrong or right way to be an advocate, all that really matters is that we find the best way for us in the current moment. But I’ll let Bud explain it because he does a pretty fantastic job… (and with a significantly more sophisticated vocabulary)

———

Epilepsy is, among many things, life changing. It touches every aspect of the those living with and around it. Alongside ourselves, friends and family members have also had to adjust far more than simply our expectations to accommodate Emma's needs. We spent years pushing back against epilepsy, trying to bowdlerize it, nearly breaking her and us with our brittle 'zero seizures' goal. There was a time where I was convinced that if I could just scream about epilepsy loud enough, get angry enough, post enough heartbreaking or witty or thought-provoking content then epilepsy would budge.

It hasn't.

Despite all my rage, her epilepsy I could not assuage and at the end of the day I was still holding my seizing daughter.

We had to learn to make space for epilepsy alongside our advocacy. That space is somewhere between recognizing our own limitations in what we can control and doing our utmost to see that Emma has a life we believe to be the best for her. Carrying on with activities in the name of normalcy because 'epilepsy doesn't define her' was often more draining than the epilepsy itself, as was constantly shouting into the ether reminding everyone that epilepsy still exists. Allowing for this space has given us room to step back and find more personally meaningful routes to advocacy.

While I believe things can and do happen that defy rational explanation, I also see it as hubris to live life expecting the miracle. It's not that I don't think Emma deserves a miracle, but like anyone who has spent time inside a children's hospital I know miracles are not a meritocracy. I also know that the magnitude with which you desire something is not the mechanism by which that thing comes to pass. It takes committed, considerate, and purposeful action. We have found that action by connecting in a more direct way with the people and organizations living and breathing epilepsy.

Living as we do in this era of the new physiognomy, where we have metrics to show the worth of our digital presence and algorithms that determine what populates our particular existential moment, we are finding that content, regardless of quality or quantity, is not enough. We have to create for ourselves a mode of existence where being an advocate is authentic and syntonic. One that grows and changes and bends with us, not one that limits or stagnates or breaks us. Advocacy, like acceptance, is living in a constant state of becoming.

I'm not sure how life was supposed to be, if it was supposed to be anything in particular for us at all. I'm not sure if all of this has happened for a reason, or if it is up to me to carve out a meaning amidst the chaos and pain. Either way we are here now, our reality rooted by an indomitable and breathtaking child who we love beyond reason and meaning, epilepsy and all.

- Bud AKA Emma’s dad