When you call me strong but I know that I am weak I only feel like it’s one more thing that I’m failing at. Because I’m supposed to be strong right? But why? Why is strength what we strive for? What if I would rather be real?
I touched on this in a previous post over a year ago but I don’t think I was ever able to convey how often I hear “You are so strong” and how deeply I resent those words. I am not strong. The me who walked around my house on Sunday heavy with sadness and grief, unwilling to get out of pajamas and trying to steep myself in a fantasy world of fiction (which by the way was Winter Solstice by Rosamunde Pilcher…it was a fantastic novel full of tidbits of wisdom and the age old, albeit faulty, lesson that love can conquer all.)
Some days I do a better job at feeling like I can conquer this beast. That even with the intrusion of daily seizures I can appreciate this life and live it to my fullest extent. Some days that feels like winning. And other days the terror and fear that she feels as the seizure approaches grips my raw and exposed heart and holds me by the throat reminding me that I am losing this battle. And then logic overcomes emotion and I realize that I’m “judging a fish by its ability to climb a tree”. That seizures have become my only yard stick for success. And I can’t even pinpoint when that happened. But somehow in the scheme of things other really important measuring tools like is she happy? Is she making progress? Does she laugh every day? Are her eyes clear? Are lost in the all encompassing question of did she seize today? The answer to that is yes. Has been yes for every single day except one in the past 3 years. The answer may always be yes. And I have to find a way to stop seeing yes as failure.
I worry that I’m not doing enough. I worry that I’m not doing the right things. I worry that I’m worrying too much. I worry that I’m worrying about the wrong things. I worry that I need to focus more on her. I worry that I’m hyper focused on her. I worry that she’s going to get hurt asserting her independence. I worry that she’s too dependent. I worry and I worry and I worry. And it leaves me feeling unsure, insecure, battered and beaten with pieces of me washed away and lost.
So. I am not strong. Even as you say it I know that I am weeping on the inside, even on the days that I paste on a smile. Even on the days that I pretend. My “Oh, thank you” IS sincere. Because I know that you think so. Even though I don’t. Can’t.
But you know what else? I don’t WANT to have to be strong. I’m not even sure that I want to pretend. I’d rather be real and say No, I’m not and that’s ok too. I want to send the message that it’s ok to not be strong. I especially don’t want my child to have to be strong. I don’t want her to forced to be a warrior. I want her to be a child! I want to give her a carefree childhood devoid of this constant worry and fear. I want to give her the kind of joy that can be taken for granted. I don’t want to be this broken person. I don’t want to measure success by a yard stick that guarantees failure. I don’t know how to change that, but I’m trying. And in the meanwhile I’ll thank you for believing that I’m strong (even when I don’t want to hear it because I can’t believe it) while I drink coffee that is salty with my own tears about as often as she seizes. (Every damn day)
And I hope that reading this gives you the courage, next time you want to utter this phrase, to instead wrap an arm around the person and tell them “It’s ok not to be strong with me”.