Fasten your seatbelt – this is going to be an exhilarating ride.
We just returned from an amazing event at Disneyland “Epilepsy Day at Disney”. We did not have an opportunity to experience any of the rides – we focused on the Expo - but I definitely went through an E-ticket experience (yes, I’m dating myself) on my ride back home. Have you ever been on the Tower of Terror ride? They have a helpful disclaimer: “This attraction includes sudden, fast drops in a dark, enclosed space which may be frightening to some guests”. Well, I might as well have been on this ride because that’s what happened as we were returning. (Queue: Twilight Zone music).
My husband & I were driving back still feeling the glow of meeting inspiring humans from our newfound community. Finding our “tribe” was affirming & we felt even more fueled to keep building our nonprofit “Young Adults with Epilepsy”. A warm fuzzy blanket kind of comforting happy feeling. Well, that wasn’t going to last for long. At a pit stop along the way, I got the most surreal email that took my breath away – our Epilepsy Walk scheduled for Saturday (4 days away & on the calendar for months) was “postponed” by our larger nonprofit. The email was terse, with no explanation, and ended “let me know if you have any questions” (!!!).
I knew this gut punch kind of feeling – it was familiar – it was the feeling of being deeply disappointed, feeling betrayed by what we thought was a trusted colleague or friend. It felt like one of those insurance letters denying coverage from a necessary treatment or medication. It was a feeling that my son and I have experienced for years from Doctors, Pharmacists, Therapists, Insurance Companies, Schools, and ignorant friends from our Epilepsy journey. So, yeah, been there, done that, not my first Rodeo. As much as we could have backed down and let this be “their” issue, I was thinking of families that traveled hours to our event last year. What if they didn’t see this postponement at this late date? This was in my backyard and this mama bear couldn’t let that happen. You don’t “put baby in the corner” or you don’t put an Epilepsy mom in the corner? Am I right??? And you definitely don’t let down Epilepsy families!!
Making lemonade with a balloon arch on top! While my husband drove, I got to work. More disappointments - we could not use the space advertised (they had never paid for it) so we would move to a nearby park. And they did not secure the permit for the park so we would have to ask for forgiveness later. (And if you are keeping score- I was-we were assured this was done - another letdown). So, you do what Moms in a pinch do -you know the drill – you do a Costco run and buy all of the purple t-shirts you can find in the Monterey area (no time for Amazon delivery) and you make a banner out of purple tape. We also brought along some cool bandanas, a portable speaker and topped it off with a balloon arch. And in a David and Goliath move, one my Board Members persuaded said nonprofit to add our event on their website. Small victories!
Quality vs. Quantity: Did we get a huge turnout? No, but – we met the most amazing people (some traveling hours) that we plan to stay in touch with and bring into the fold of our nonprofit. And in a very touching moment, we met a young woman who was the best friend of a young Epilepsy Warrior who passed away this year. She was at the walk and formed a team last year. We felt her in spirit.
Resilience & Grace: Epilepsy, like life itself, is unpredictable. It doesn't adhere to schedules or plans; instead, it throws unexpected challenges our way, testing our patience and resolve. Just as we had meticulously planned our event, we've planned our lives around managing epilepsy – doctor appointments, medications, and battling it out with insurance. But much like the canceled event, our efforts have often been met with unforeseen setbacks and disappointments. Our journey has shown us the goodness of people, their capacity for compassion, and their willingness to support one another. After the cancellation, our community rallied together, offering their help and resources. It was a testament to the strength of the human spirit, the same spirit that has carried us through the darkest moments of our epilepsy journey.
Sh*t Happens – it’s how you respond that shows one’s true character & grit. In the end, our journey with epilepsy has taught us that life is not about the challenges we face but how we respond to them. It is about finding strength in the face of adversity, about turning disappointments into opportunities, and about embracing the goodness of people. Our son's journey with epilepsy has inspired us to create change, to raise awareness, and to support others on their own journeys.
The moral of the story? Just keep swimming, don’t let the turkeys let you down and there are AMAZING people from the Epilepsy Community. We are tough, we’ve experienced so much – don’t underestimate a group of people that have heart, persistence, love, and resilience.
