I have a new body part. (That’s what you call an ankle-foot orthotic, right?) Acquiring it took time (of which I have near-endless amounts) and patience (of which I have almost none). Since the orthotic is custom made, the orthopedist had to come to take a plaster mould of my foot and leg and carefully … Continue reading AFO
Just over a week before Christmas, I had a seizure and needed to be brought to an acute-care hospital. The next day, still in the ICU, I had another seizure, tried to get out of bed, fell, and broke my hip, an injury requiring surgery. A few days later, I went into status epilepticus again … Continue reading Christmas
So much has happened since I last wrote that I got too overwhelmed to write anything at all. And then what would likely be immediately obvious to most people popped into my head: it’s possible to update in bits and pieces rather than all at once. So here’s a bit. Or a piece. (You decide.) … Continue reading A Bit or a Piece
I’ve been at rehab for over two weeks. I’ve settled in and already feel as if I’m making progress, though I’ll admit that, being the impatient person I am, I get frustrated that I’m not a specimen of perfect human health already. I try to consistently look back and reflect on where I was a … Continue reading Steady(ish) She Goes
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
De Morbo Sacro: Life and/with Epilepsy 