I met A through an epilepsy advocacy group to which we both belonged. I don’t remember how or why, but we soon became penpals, frequently exchanging letters and small gifts through the mail. This continued for years. I grew accustomed to happiness and gratitude bubbling up my throat when an intricately-decorated envelope—inevitably including a lengthy … Continue reading For A
It’s been a hectic but very positive week. Real progress is being made, readers! I traditionally haven’t done well with transitions. As I’m sure I’ve written a bazillion times before, my preference is usually to remain in an uncomfortable situation rather than face the risk presented by change. (Which happens to be one of my … Continue reading Transition
Good things are happening. First and, probably, foremost, I’ve started taking steps (using an “air walker” and with the assistance of two physiotherapists, but still). My first attempt I managed six; now I’m up to around twenty-five. It’s absolutely and unbelievably exhilarating to “walk.” It’s also very, very exhausting. Second, I passed my swallow test! … Continue reading (Literal) Steps Forward
I’m lucky to be writing this post today. I’ve been in the hospital for three-ish months now, the first two of those in the ICU. Initially, I wasn’t expected to live. I had gone into septic shock due to multiple infections, and my heart and kidneys were failing. The doctors called a “code blue.” I … Continue reading Lots of Change, Some of It Good
… 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
It was on a particularly challenging day last week that I received a message with an offer so generous it made me want to cry. (OK, fine; some tears were shed. I’m becoming an increasingly emotional beast with each passing year.) It was from my LEGO Fairy, who wanted to know if she could purchase … Continue reading Return of the LEGO Fairy
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
Tonight is New Year’s Eve. It isn’t a “holiday” my husband and I have traditionally celebrated in any major way, mostly because my bedtime is around 9:00 p.m. This year will be much the same; our plan is to play a game in the late afternoon, have a festive meal (with the Christmas crackers I … Continue reading Looking Forward (Happy NYE!)
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
De Morbo Sacro: Life and/with Epilepsy 