Red Light. Green Light.

the start-stop of living with spontaneous paralysis

For the past month, my speech has been coming and going. Nothing new to see here. Having gibberish emerge from my mouth where once there were words is something that I’ve been weathering for the past five years. Most days I take it in stride. Technology does an incredible job of closing the gap. Between text-to-speech apps and good old fashioned texting, my thumbs convey the messages that my lips cannot.

Except, and this is a big except, there are certain days where the magnitude of my inability to think words and have them come across coherently hits me like a ton of bricks. I realize that I’m scared. I always think that the fear is coming from a worry that this is forever. That’s not it though.

Lacking the ability to control my own actions is daunting as is the unpredictability of the situation, a reality that I’m not always willing to admit to myself.

Have you ever lost the capability to regulate your own blinking? Lying in bed motionless with paralysis unsuccessfully willing my eyes to open terrifies me every time. In those moments, I feel truly helpless.

Better question. 

Do you remember the days of running across the playground waiting to hear a classmate yell, “Red light!” at which point you abruptly had to stop in your tracks or be ejected from the game? What I’m living feels like the worst game of Red Light, Green Light in existence. 

Green light sentiments brought to you by Castle.

Red light! Lie in bed immobile for three days. Green light! Deep clean the kitchen and begin rearranging the cabinet contents. Red light! Abandon kitchen project midstream and return to bed. Green light! Ignore partial kitchen progress to visit with a friend. Red light! Realize it’s been three months since the kitchen reorganization began and that there’s no end in sight. Green light! Laundry time while I can. Red light! Clothes can hang out folded atop the dryer or in the basket for a few days. Green light! Prepare crust for rhubarb pie while the season is upon us. Red light! Place crust in the freezer so that it doesn’t turn.

So while sounds that in no way resemble words eclipsing my speech can be frustrating, it’s often the bookends of everything else that I’m incapable of doing during those times that tick through my mind and wear on me. The distance between what I want to accomplish and what I’m physically capable of doing is on the scale of the Grand Canyon. My desire is strong but often completely irrelevant. The exhaustion of it all prompts me to think that I’m lazy or failing or not trying hard enough despite knowing that’s far from true.

Know what? I have no idea what to do about this.

For all of the mental pep talks I give myself and the reassurance from my dad that I am indeed not disappointing him even though he also has to live in this half completed space, I’m at a loss. Try as I might, I still haven’t figured out how to solve for this. And while that doesn’t feel okay, it has to be. This is where I am.

Green light?

If you’re curious about a resolution to all of this, you know what to do.

Hearts. Hearts. Hearts. Also from Castle.