I’ve been awaiting this day for months with a curious mix of over-the-top excitement and nervous anticipation, proud and pumped but not wanting to jinx myself.
Exactly a year ago, I was discharged from the hospital. That’s right: today marks a year since I’ve been an inpatient. A year without an admission. A year without an ER visit, even.
Sometime last week, my husband and I talked about how we wanted to mark this anniversary, second only to that of my wedding in terms of importance to me. (Scratch that. Sorry, A, but I think they’re tied.) While we were marvelling at how drastically things have changed, especially over the last two months, which have seen an explosion of progress, we realized that this has been the longest I’ve gone with nary a hospital visit in at least twelve years, if not longer—especially impressive (if I do say so myself) given that my last admission was the lengthiest and most intense of my life. And it isn’t as if I came home a picture of health, either: indeed, my palliative-care doctor admitted that she’d assumed, a year ago, that I’d end up more or less straight back where I’d started.
I’d be insulted by what I’d normally interpret as being a lack of faith in me if she hadn’t had an abundance of evidence informing her prediction. I mean, a year ago, I required a daily visit from a nurse, and whether or not I’d be able to transfer to a bedside commode was a real concern. A year ago, I couldn’t tolerate sitting in my wheelchair for more than short little bursts. A year ago, I had a G-tube and didn’t really think that I’d ever again have anything but PSW-administered bed baths. A year ago, I spent most of my time dozing in bed, unable to do much more than sleep and listen to audiobooks. I was going through the motions, but it took so. much. frickin’. effort.
And now? Now, I have to force myself to rest during the day and, importantly, am able to do so, though for thirty minute chunks—all that’s necessary—knowing that taking care of my body facilitates my participation in the meaningful life I’m building for myself. Now, my nurse comes periodically to check in and monitor but doesn’t need to do daily G-tube flushes (’cause I no longer have one!) or dressing changes (’cause my pressure wound is so drastically better!). Now, I can sit on the couch with my husband, go for coffee with friends, wash my hair in the shower, sustain fulfilling relationships, and pick away at projects that give me purpose. Now, I can take care of most stuff for myself and have reached a place of acceptance as to the increasingly short list of things I logistically can’t.
After some brainstorming, my husband and I landed on how we’re going to celebrate this (massive, monumental) milestone: with a night at a fancy downtown hotel that has fully accessible rooms. We have one reserved for later this month. When we hit upon the idea, it felt right to us both. Not only will it be a fun and slightly frivolous thing to do, but it’ll also be symbolic of what we’ve worked so hard to accomplish. If you’d told me a year ago that I’d be in the position to sleep away from home, the implausibility of it would’ve made me either laugh out loud or give you a blank stare. Now, a year later, it’s happening. Not only that, but we’re seeing it as a stepping stone to bigger and better trips we’re going to take over the course of the coming months. The future is bright and promises both physical and metaphorical growth.
I can’t and won’t take full credit for what’s in reality been a group project. Thanks to everyone who’s helped me get where I am. Thanks to everyone who’s provided me with practical and emotional support. Thanks to those who simply believed I could do this. Heck, thanks to those who questioned whether or not I could: you unknowingly fuelled my stubborn drive to prove doubters wrong. I think it’s safe to say that we’ve earned a communal A+.
De Morbo Sacro: Life and/with Epilepsy 