Epilepsy Awareness Month. Day 6!
When all else fails take yourself to breakfast and quote a great song!
“It’s always tease, tease, tease
You’re happy when I’m on my knees
One day it’s fine and next it’s black
So if you want me off your back
Well, come on and let me know
Should I stay or should I go?”
It’s a bit maddening, this epilepsy. One day is fine the next is black, and sometimes the next and the next, and then it’s fine and then it’s black. It’s a big tease..and not the good kind!
He was down to just a few seizures a week, maintained emotional regulation, steady cognition, and even after school tennis one day a week. But the slow decline from the stress of moving, the toll of school, and this crazy diet that gives him reflux and worse, we’re now back to 4-6 seizures a day, major emotional outbursts, constant stomach aches, and a general state of feeling bad. And there’s very little we can do about it but move meds around and wait. It’s just his life….right now.
There are magnificent days! But the madness lingers and all I can do is control how I handle the waiting, how I handle the process. I HATE waiting. I try meditating, I try working out, sometimes I try shopping. I take such hot baths I almost pass out. I try not to cry. I get pissed off hoping the action of anger will help, and then I succumb and realize it won’t…and cry. I try everything…except drinking. I can’t escape. I have to be ready. So I have to control how I handle the waiting. I’m at about 40-50% success rate right now which is way better than I was 6 months ago!
I used to force myself through these times like a starving tiger on the hunt. Too tired to persist but too hungry to stop. Now I slow myself down and try to live in ten to twenty minute increments. And I treat myself. I never used to, but I do now. I treat myself with respites to breathe and be before resuming the hunt.
Thank God for breakfast at Parc! It’s my favorite place because when I’m there I feel like the me I thought I was going to be. Free and a little bit fancy, enjoying my perfect French tea. It’s not that I resent or hate the me I am, but when I can see the trees and watch the people go by I can once again think and dream. I can pretend, for a moment, it’s all not such a tease. In those moments, I’m just another city livin’ woman after drop off eating breakfast by the park.
Should I stay or should I go? I’m not going anywhere! But if you can’t find me, I might have snuck off for a quiet cup of tea!