The spilled wax sat on the table all day.
I pretended not to remember it needed cleaning. Really I pretended not to be angry that it had been spilled, again by negligence? Purpose?
But there I was, end of the day, arms tired, flaking wax off my dining table with stiff card stock.
I’d been at it an hour when the frustration began to bubble, then boil over.
“Why?! WHY did this happen?! Why can’t she extinguish candles like a sane person?!
How am I gonna reach that part?! HOW AM I GONNA CLEAN THIS?!”
I stare at the wax blob just out of my reach on the cappuccino colored table top and rail some more.
Allowing my anger to contort my face, flush my ears.
I maneuvered my chair this way, then that but no position granted my dominant hand enough access to flake the rest of the spilled wax blob.
I screamed.
Tears began to fill my eyes.
It was just wax though.
That I couldn’t reach. That maybe a year ago I might have been able to? That in my mind was not that far away but that I still couldn’t clean.
My aide comes in as I settle on using my blunted letter opener to carefully flake the wax blob with my lumbering non- dominant hand.
The first half of the spilled wax took me over an hour to scrape up. This part, that I couldn’t reach took her less than two minutes to scrape and about the same to wipe up.
The tears threatened to spill forth, bringing with them all the ready pre-loaded societal mantras that get imbedded under my skin and crush my soul:
What would you bring? You’ll need help for everything. That’s not fair to anyone. Burden. They were all right – no one needs this…
I close my eyes and close out the feelings and thoughts that seem ready to upend me.
It’s just wax. It’s just wax. It’s just wax.
My nostrils flare and feel hot, tingly.
It’s keeping me alive and nothing more, Spinraza. I am grateful and sad that I can’t get more ability out of it.
It is frustrating wanting to do a thing… things and not physically being able to, despite what your heart says or wishes.
There is so much dissonance between the things I’ve been able to accomplish and the everyday mundane things that I cannot do.
It takes my breath away sometimes, the chasm between the two.
It drains the color from me when I can’t reach out my arms to hug a loved one, to give a caress, proffer a quick squeeze. It shames me to be told this thing that I already know, that I feel trapped in my body with,
that I cannot fix.
It has been an outside looking in existence, where people see me and don’t understand the level of solitude that’s inside.
Solitude because there is no shame if there is no one close to shame you. There is no color to be drained if there’s no one near who needs hugging. There is no dissonance if your heart doesn’t have a song to sing.
That blob contained all my physical disappointments, all the abilities I’ve lost and will keep losing. It’s the places I can no longer reach and the things I will no longer be able to experience.
Let’s hope there are no more spills.