I’m falling apart.
Right when you feel strongest, parts start to crumble. I know I’ve done too much, tried too hard, pushed my limits. I had an amazing long run on Saturday and then a debilitating aura on Tuesday. I always try to maintain positivity with my Epilepsy but there is a point where you just
I usually downplay my episodes, twitches, auras, whatever you want to call them when talking to others- people without Epilepsy. I use the bright, not-quite-cheery-but-almost tone, giving brief descriptions of what I felt just to make it all… go.away.
It’s the fear though. It’s the thought that it’s here. Inside you and you can’t control it. You cannot deep breathe it away. You cannot stop time and those around you. You can simply ride it out. Not so “simple” when you’re living that fear. Breathing that fear because you are going to try and deep breathe anyway. You attempt to talk to yourself; you are your own calming force, but you’re not. It’s not that simple. If it was, you’d control your Epilepsy. Everyone with Epilepsy would own it. There wouldn’t be any Epilepsy.
Instead, there’s me. In the middle of a crowded Starbucks with my 2 year old son. Drinks in hand- him with a Very Berry for being so good at pre-school and I with my decaf- holding a bag full of healthy snacks to enjoy outside. We’re waiting though, for our chicken sandwich to warm up and it hits me. I know she sees it- the lady standing across from me because she gives me the wrinkled, confused face. I grab my son’s hand but it’s weak. I’m white, I know I am because I’m floaty. Light as a feather but electric, from the tips of my toes to the top of my head and through the hand holding my son’s. The lack of strength. God, please just sip your drink and not run away from me. I can’t clasp hard enough. My head is zinging and her stare only makes it worse. Finally I hear my name, slide the sandwich off the bar and into our bag and escape outside. Come on Nolan, let’s go. And I freeze. Do I sit here, in the chairs so close to a road for my son to run into if I go out, or do I push myself to go for the car? Lock us in there. Keep him secure. Have the big one privately in our little cocoon.
It’s the fear… How big? How bad? How long?
I went for it. Nolan yelling he’d picked the perfect sitting area and me telling him “let’s go!” I try to point my finger at my side for emphasis but it won’t do it. I don’t have the strength, the control. I’m gasping for breath. “Whyyyyy?” “Because Mommy doesn’t feel good.” All while passing the same people we saw going in 10 minutes before when we were laughing and talking. They see the fear now. In fact they’re all staring. No one asks. I tell his slightly blurred image to hold my hand. Hold it tight baby. Don’t. Let. Go. And we make it to the car. Safety. But I don’t feel it.
Instead there’s me. I’m falling apart. Breaking.
Piece by piece.
When it happens in our every day we can at least continue to say that we keep on trying. Despite the outcomes, our spirit to do our very best has great meaning for our family. Just remember your person and continue working for the things you love. You are not breaking piece by piece, you are simply working with the strengths that you own. God bless you =)
Don’t mean to ask a silly question but how do you still have your driver’s license? I haven’t had mine for eight years now and cycle everywhere instead, but even that has its risks and some days I get up and know I can’t even take that. :-( Damn disease!!
Not silly at all! It’s been over a year since I had my last seizure and that one wasn’t a full blown grand mal. I always pay attention to my body and don’t drive when I know I shouldn’t and I pull over immediately if I ever feel something and have family or friends pick me up. Also, most of my actual seizures have happened in the PM so I just avoid driving at that time. And last, I did have my license suspended at one point but then I didn’t have another seizure for 5 years… I think it also depends on the DMV rules where you live…
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Ah! I see! I always think it would be such a responsibility if I did get my license back… What if I got somewhere feeling ok and then felt weird and was stuck… The temptation to get in the car and drive home might be too great? I don’t know. I’m not sure I ever want mine back now (I had one at the wheel 😔).