… and, to be honest, I only remembered because a friend sent me a text wishing me a happy Purple Day. I’m pretty sure the fact that it totally and completely slipped my mind makes me a bad PWLWE (Person Who Lives with Epilepsy). Or maybe it has more to do with the other “stuff” … Continue reading It Was Purple Day (for Epilepsy Awareness) on Saturday
I recently wrote a longish autobiographical piece about my childhood OCD-based fear of waterslides. (It’s still not polished, and I’m not sure what I’ll do with it after the final edit, so I’m not posting it here.) Waterslides weren’t the only way OCD affected my life when I was a kid, and my brain eventually … Continue reading Isolation, OCD, and a Request
If you know me in “real” (scare quotes because what’s real, even, in this day and age?) life or read this blog, you almost certainly know that I’m a LEGO superfan. Those little plastic bricks aided me as I recovered from a brain injury; they’ve distracted me during long hospitalizations; they’ve rewired neurons fried from … Continue reading Yet Another LEGO Appreciation Post
I'm taking a few minutes from my Boxing Day to wish you a happy holiday week (if that's relevant to you). I hope that you're striking a balance between celebration and safety and that you're responsibly marking the season in a way that feels right to you. In other words, Merry Christmas! Or not. My … Continue reading This Christmas
My husband and I each got a third dose of the Pfizer vaccine yesterday afternoon. So many (unexpected) emotions! Most of all, I’m grateful, relieved, and more optimistic than I was about my ability to hunker down and survive—emotionally and otherwise—whatever this next COVID curveball throws at us. In a word, I’m boosted. I don’t … Continue reading Boosted!
It's a pretty normal Saturday in hospital land. I've eaten many things and drunk many Ketocals. I've socialized a little (something I wasn't doing much of when my postictal psychosis was at its worst) and considered building a new LEGO set. I've had a seizure. My seizure frequency means that I wake up knowing that … Continue reading A Glimmer of Hope for “a Challenging Case of Very Intractable Epileptic Seizures”
I’ll begin by acknowledging that despite having had the best of intentions to write at least a post a week throughout January, I’ve instead continued to more or less ignore this blog. I’ve had legitimate reasons for falling short on my WordPress duties, but the guilt nonetheless remains, so I’m just, you know, putting it … Continue reading Check In/Check Up
Though I'm a little late to the party (sorry, that was a groaner), I wanted to weigh in on an unlikely controversy that has many members of the epilepsy community angry. I'm angry, too. In August, Netflix released the film The After Party. I haven't watched it—I'll admit that I'm a little curious, but I know … Continue reading Representation Matters: Netflix, “The After Party,” and How to Hurt One Group in Order to Entertain Another
For complicated reasons that aren't the topic of this post—sorry—I've been trying to stay in bed, sedentary, for much of the day (and night, but that goes without saying) since last Wednesday, when I got some not-great news at a medical appointment. Mandatory bed rest when you're physically very unwell is pretty easy; turns out … Continue reading Compulsively Knitting for Fun, Entertainment, and Distraction
Forty-five seconds. A blip, and likely an inevitable one, after which I rolled over and went to sleep. I'm making a real effort to convince myself that forty-five seconds mean nothing, but they keep tossing around my head, unwilling to simply be what they were—one complex partial seizure among dozens I've had this calendar year. … Continue reading Forty-Five Seconds
De Morbo Sacro: Life and/with Epilepsy 