All tagged Epilepsy
Before Adelaide died, I wrote about the garden she had planted for us, a garden full of people that would lift us up and take care of us after her passing. What I didn’t realize at the time was that as long as I continued to cultivate this garden, by maintaining relationships or doing work in her memory, her garden would continue to grow and thrive.
Next week, on Tuesday, March 26th, the epilepsy community comes together for Purple Day, one of several epilepsy awareness days throughout the year. While my commitment to this community certainly hasn’t waned, I recently had to acknowledge that my sense of urgency has. Perhaps this is to be expected. I’m no longer administering medications five times a day, fighting with insurance, or holding my daughter as she seizes.
Earlier this year, I received an email from our representative at the Undiagnosed Diseases Network. They had finally received and analyzed the results from the genome testing done on Adelaide’s donated brain. The emotions that ensued took me on an unexpected ride leaving me yearning for the peace I had hoped would come with a diagnosis.
For those of us well-versed in epilepsy, the connection between seizures and their psychological effects is a no-brainer (pun intended). However, the lack of available providers and treatments is all at once infuriating and devastating. This is a topic that comes up all too often during my interviews for CURE Epilepsy’s Seizing Life podcast. It is also one that this week’s guest blogger, Yarrow Rubin beautifully describes in a powerful essay.
I want to be clarify something after receiving several messages following the release of our “Day in the Life” documentary. Epilepsy sucks a whole freaking lot regardless of specific details. You or your loved one doesn’t have to have seizures every day, week, or month - or to have died from them. Someone with epilepsy can lead an outwardly ‘typical’ life: physically, emotionally, behaviorally, communicatively and the impact is still all-consuming and over-whelming. But my guest blogger this week, Carrie Buck says it much better than me.
On Monday, CURE Epilepsy will release a short documentary about a day in the life with Adelaide. It focuses mostly on an average morning in our home circa February 2018 – six months before I even started this blog. It is admittedly a challenging watch and includes Adelaide having a seizure, however I think it is important to share this life. To break through the apathy and lead with empathy. This was our normal, our so very not-normal normal - and remains a version of normal for 65 million people living with epilepsy worldwide and that will never be ok.
In honor of CURE Epilepsy’s virtual event, “Unite to CURE Epilepsy” I wanted to share a personal story from our epilepsy community. Tracy Molnar responded to my call for guest blogger submissions, and I am thrilled to share her experience with her daughter, Lemon. Her vulnerable essay is a sincere reminder of what we are fighting for and how important this community is to each other.
“I’m so sorry that you are a part of this club but we are grateful you are here.”
David Axelrod said this to Miguel and I as we were wrapping up an emotional interview that would be shown during CURE Epilepsy’s annual Chicago benefit. It was 2017 and the first time I had heard someone refer to the epilepsy community as ‘the club’.
Years ago, when I first began speaking with researchers, I would catch the sparkle in their eye when they heard about Adelaide’s medical mysteries. Internally I wanted to scream at them, “how dare you find her suffering intriguing! How dare you draw ambition from our desperation!” But over time I’ve grown to appreciate the symbiotic relationship we as patients and caregivers have with researchers. We are their sparkle and they are our hope.
With epilepsy awareness month coming to a close and infantile spasms awareness week upon us I’ve been thinking a lot about my advocacy. Specifically about the nagging guilt I’ve felt for not posting as much about epilepsy awareness as I typically would this time of year. Am I failing this community 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 like a doctor decoding an EEG.
It’s Purple Day! You know the Cervantes family loves an excuse to spread some epilepsy awareness. I LOVE this community. I LOVE the people it has brought into my life, the lessons they have taught us and the empathy and understanding with which we support one another. But lately I’ve also had a sense of desperation as these awareness days come and go and our connection to them is no longer pictured with us.
Well, friends, I finished the first draft of my book last week: 63,000 words that ensure Adelaide will live forever. At first I thought the book was going to be about Adelaide: her life, loss and lessons. But what ended up coming out was my own journey and how her lessons and her losses forever changed the course of my life. Now, I just need to find someone willing to take a chance on me and my inchstones.
