It’s not that I go out of my way to make a big deal out of it each year. But I generally remember, on May 29, “Today’s the day when I had my brain AVM Surgery, the day when everything changed.” My stroke happened a few days after my brain AVM surgery, but all that time is such a haze that I tend to think of Brain AVM Surgery Day as Stroke Day.
But I didn’t think of it at all this year.
What does Forgetting the Anniversary of my Brain AVM Surgery Mean?
I was busy. I’m working in my “hired nerd” job now, doing tech support. I’m writing for Ollibean, as well as doing my personal writing. On the 29th I just would have started another writing/editing/content management job for another website. Considering that I’m doing well if my socks match on any given day, it’s a lot to keep track of.
Maybe the significance of Brain AVM Surgery Day in the greater scheme of my life is just fading. Maybe my sense of who I am as a disabled person gives that day less and less power as the years go by. Maybe Brain AVM Surgery day will eventually just mark the day I made, in my mind, the quiet transition from “pre-stroke Sarah” to “post-stroke Sarah”…that I moved from the Sarah that I was when my arm and leg worked and I didn’t have to take medication for seizures to the Sarah that I am now that my arm and leg don’t work so well and I have to take a whack of pills every day (See Geneen Roth’s book “Appetites” for some writing on this idea that pulled me through some rough times).
I don’t think much about my arm and leg anymore and how much “better” they’ll get, or if they will get any better. I don’t do physiotherapy or occupational therapy and haven’t for years. It’s not that I don’t think, from time to time, things like, “This would really be easier with two hands,” or “I need someone with two hands to help me with this,” but I either figure out a way to do what I need to or, or I call someone for help, or I wait until there’s someone around to help me.
It is what it is.
But it’s becoming my own little pull between “acceptance” vs “cure”, because I’m slowly discovering that not keeping up with some kind of treatment regimen for the hand and leg, even if it has absolutely no effect on return of function, is having potentially having effects on my health in other ways. I wrote late in 2012 about how significant contracture in the muscles of my calf in my weak leg had brought on a suggestion from a doctor that I wear a brace for a few hours a day. Now it’s been suggested that I go see an osteopath about the contracture in my left hand, which I’ve learned from being a group on Facebook that some people treat with measures as drastic as Botox injections to relax muscles. I even had a doctor suggest to me once that I consider having tendons (or perhaps it was ligaments, I can’t remember) cut, but my neurosurgeon did not seem in support of that.
It’s been 13 years since Brain AVM Surgery Day and I feel like I’m taking tentative steps into a new phase of my life. I’m not sure where all this new information fits in when I’d basically thought I was happy enough as a disabled person to continue with things as they were…perhaps even happy enough to stop the hyper-vigilent watch for that day in May every year when everything changed.
Nothing ever fits neatly, it seems. But perhaps that’s just the nature of life.
I’m trying to stay open to the possibilities and to stay grateful for what I’ve been given. Which includes you, readers. Thank you for coming along with me on this journey.