I KNOW WHAT YOU’RE FEELING:
I know how it feels to be lost. To wake up one day and realize you aren’t who you were or who you thought you’d be. It’s as if over night you have become a depleted blob, robbed beaten, and sad. Viewing the street from the corner of your swollen eyes, I know how it feels to be blindingly terrified of much of ourselves we’re capable of losing. Once, of course, you realize you’re lost to begin with. It’s an epic blackout that plays more like a bad TV pilot than life. How is it that the rest of the world can go on humming forward as it always has without anyone noticing that you are not the same, that you are stuck?
I remember exactly where I was when I suddenly awoke and realized I was still here after months of numb periphery existence. I awoke in the same life but a different world. A sadder harder world, a world that took me in but didn’t give me a place to be, to feel, to live as the me I used to be…before diagnosis.
I was walking to”my” corner coffee shop, as I had done a hundred times before, and I noticed how when the light hit the pavement it suddenly felt like a decorated set on which the director just yelled action from some unseen on-high chair and not my daily grounding of repetition and caffeine. I remember thinking how the people I passed didn’t seem real, they were 3 dimensional but had no substance. I kept wanting to reach out and touch them to see if in fact they were the unreal ones or if, as I suspected, I was the out of place character in the scene. If I was the one without substance.
This new observation was an awakening to a hollow existence. I became overwhelmed by a sudden aloneness and everything felt off and everyone apathetic. A Twilight Zone land perfectly designed to subtly tear away at my sanity. To undo me slowly while some maniacal overlord played tick tock with my demise by making everything look and feel real and normal, but ensuring that I knew, in my bones, the neither the world nor I was or would would ever be the same again.
Awakening to life but with the knowledge that I would never feel safe again was both humbling and biting, a relief and a despair.
The, I-have-a-child-with-a-lifetime-illness world, is a world where you spend your days sprinting from one place to the next in a mass of panicked mania only to instantly drop and drag your soul from place to place, immobilized with your too heavy burdens. It is a place where fight or flight mode lasts for days, months, years while you try desperately to just hang on, only to finally awaken one day and realize you’re lost. Your innocent child’s destiny, all too starkly presented, is not yours to design and while you were coming to grips with that hateful truth, you’re body has changed, your passions washed out, at best, your friends don’t know the new you, your husband is a ship passing in the night, and it seems you have aged eons. It’s difficult to find words for adult conversations that don’t include medical jargon or prayers scheduled carefully around daily appointments. Your mind is numb and your soul is tired and you just want to rest and catch your breath. And your heart? Your heart is just flat out broken.
And yet, still, always, you are pulled along by an instinct, a drive, as old as evolution itself, maternal, searching, trying to understand this new foreign-illness-language.
You’re not who you were, you’re not who you thought you’d be, nothing is as it “should” be and you’re not sure you’ll ever be real again let alone rediscover your own spirit.
We’ve been there! We are there! We’re trapped here in the hell of being there and we too are dying to be found.
Please don’t give up, you are not alone! You will not be lost to yourself forever. You are STILL a wonderful, beautiful, unique individual. In so many ways, deep important ways that really make you more than you ever were before, your spirit shines brighter because you’ve made it here! You are a grown up with your own, feelings, dreams, thoughts and aspirations. With your own road to travel, not just your child’s. I know how it feels to be lost. I know how it feels to think you’ll be lost forever. I know you! I know how hard you’re trying but that times are hard because the kids are sick and they may never get better so there isn’t the luxury of self.
I know how it feels to be lost.
But…… even with all that, we can be found. We can!