All tagged Epilepsy
Last year I shared that we found Adelaide’s true diagnosis. Now, additional findings, which Adelaide's tissue and data were a part of, have been published. Learning her diagnosis felt anti-climactic, but this study, even the little bit that I understand, has brought me peace I hadn't imagined.
If you are fortunate to live long enough, inevitably you will experience moments that forever change the trajectory of your life. These are the dates we recall effortlessly, markers in time, that separate life into before and after. My most significant date is May 26th, 2016. Not even Adelaide’s death, Jackson’s birth, or Anessa’s arrival can compare to the change leveled on our family that day.
Karen Valentine turned to advocacy alongside the unexpected role of medical caregiving when her son Levi was diagnosed with epilepsy. Then, last year, Levi, passed away from SUDEP when he was only 16 years old. During a recent conversation, she mentioned the irony of going from being a selfless caregiver to the necessary selfishness of grief and what a struggle that aspect had been for her. Woah. So, I asked her to write about it.
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.
