(I wrote this yesterday and forgot to post it, but the sentiments remain!)
Yup. It’s Purple Day (for epilepsy awareness), and, despite having had a seizure last night, I woke up beaming this morning with what can only be described as … wait, is this what unsullied happiness feels like?
I’m in a very different place than I was for Purple Day 2022, when I was quickly deteriorating. If you’re acquainted with me in real life or are a regular reader of this blog, you know how much has happened in the intervening months. On top of the medical crisis I secretly call “The Big One,” I’ve been admitted to the ICU on four or so occasions due to status epilepticus. I’ve lost track of how many times I’ve been intubated (seizures can really suck). I broke a hip while postictal, requiring surgery and leaving me with a metal rod cuddling my femur and a long, angry scar from knee to pelvis. I’ve recently had major problems keeping my Dilantin levels in check.
But this weekend has been a reminder that I’m not alone. Far from it. One of my closest friends and her husband (now also a great friend!) flew from Boston to visit and to celebrate Purple Day. She’s a true kindred spirit who gets it gets it. All of it. Though we both live with epilepsy and talk about it when relevant, it’s not the focus of our relationship: we more often talk, laugh, and rant about everything else, which has reinforced what I’ve long believed but have nonetheless found challenging to internalize—that it’s OK to be all of who I am. While epilepsy and other medical conditions are part of that, I’m not being untrue to myself or faking something with others by concentrating on what brings me joy and gives my life meaning.
My sister-in-law and brother-in-law are also here this weekend. They’ve been incredibly helpful, and it’s been so, so good to see them. I’m touched that they came and that they’re able and willing to provide the kind of support and love that my husband and I really need right now. We’re truly lucky.
One of the best things about having these visitors is that we’ve been able to socialize in a “normal” way, effortlessly and at home rather than in a hospital room. This is what I’ve worked for. This is what my husband has worked for. I’m a person with epilepsy and a person with complex medical issues, but first and foremost, I’m a person. I’m me, weird and quirky as that “me” might be. Still, more resources and research dedicated to improving the lives of people who experience epilepsy could make it much easier and less dangerous to socialize, to participate, and to fully embrace all of who I am.
This brings me back to what I want to emphasize this Purple Day—that people experiencing epilepsy deserve every chance to have the best quality of life possible for them. I’ve benefitted tremendously and tangibly from advancements in epilepsy treatment and research, but there remains a long, long way to go.