All tagged Advocacy
We made coffee and packed lunches like always. I showered and got dressed like always. We got everyone out the door and off to school like always. The actions were routine, the scents and sounds familiar, but inside I felt anything but. No, that’s not true – I knew this feeling all too well, it was grief and it hurt.
The election coverage is giving me serious anxiety and given how long it could take to determine the results, I get the impression it isn’t going anywhere anytime soon. Feeling like I have little control over the future is not a new feeling for me. So, I suppose it shouldn’t have come as a surprise that I resorted to a few time-tested tactics.
So much of the contention I see in the country right now feels like the product of grief. Not grief as in the loss of a person, but grief as in the loss of an idealized future. Grief as a resistance to the societal changes that are occurring at a faster rate than ever before. And the anger that can surface when we our grief is left unchecked and unseen.
When I first read on Sunday, that Joe Biden was stepping aside like many I felt hopeful. When it became clear that Kamala Harris would be stepping up, the injection of energy, unity, and determination was intoxicating. I’ve enjoyed letting excitement take over because hope feels good. But as I became more hopeful, as I allowed myself to envision a Harris presidency, I felt a surge of anxiety bordering on panic.
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.
Today is International Women’s Day and please forgive me, but I’m feeling a touch jaded at the moment. Unfortunately, in the fight ahead of us, we don’t have the luxury of being jaded. So, this week I went looking for inspiration and fortification and realized I didn’t need to look very far.
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.
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.
Never, in my nastiest nightmares, did I ever think I would have to make the decision to let my child die - let alone twice. But I have: Adelaide was my beautiful ladybug that passed away outside of my body days before her fourth birthday and Elvis was my little gummy bear that I carried inside me for 20 weeks. After Elvis died I felt compelled to advocate for women receiving abortions further into their pregnancy because I truly believe they are misunderstood. As of this week, however, I guess we have to advocate for abortion as a human right in itself.
Jackson doesn’t go back to school for three more weeks, but everyone’s back to school photos have me feeling alllll my feelings. You see, Adelaide should be starting kindergarten this fall. There will be a lot of these should’s to come. But this one is hitting me surprisingly hard for so many reasons. Not least of which is the stress I know medically-complex families are enduring as they make life or death decisions about how to protect their children in a world that has politicized masks and vaccinations.
