Thursday, December 16, 2021

The plans that we made

When it was everyone that was pained with isolation the world opened up for all of us. Now that it’s back to some of us the doors slammed shut again; slamming us in the hearts. I am disabled. I have never until this pandemic really thought about it because I had so many coping strategies to trick myself and everyone else I wasn’t; it was a lie. This all started very funny; hysterical actually. Maybe that’s how all the best cries of the soul happen from laughing to crying all in a matter of seconds that amplify the circumstances. My sister texted me she accidentally got locked inside the auditorium where my niece’s winter concert is tonight. She walked in with my niece early because they practice beforehand and decided to go up to the balcony and get seats. While she was inside they locked the doors. I chuckle while I write this as she was texting me and hiding because she didn’t want to make a scene.


Meanwhile over in my bedroom my parents are both here having dinner before they head to the concert. My mom may have made me an early dinner and headed home but we had horrible high winds last night and they among thousands were still without power. This lead to the discussion that they hadn’t gotten my niece flowers and weren’t sure if our local grocery store had opened back up yet. I had left my room and told them not to worry since my sweet friend Renee had sent me 19 red and white roses for Christmas that arrived yesterday. I said you can take some of these for my niece. Well a half hour later my dad is antsy so he decides he will go see if the store is open. So I am back in my room; Daisy fast asleep perhaps sensing she doesn’t have to leave yet tonight deeply snoring. I am in the midst of 007 texting me about her hi-jinx at the Wilson Center and I hear “Don those are berries” … again I burst out laughing. 

So now the exchange between texting with my sister trapped in the auditorium and my dad making a special trip as my mom explains these are fillers; no not mini roses it all feels like a bad sitcom playing out before me. I yell to my mom and tell her to just add the roses not wanting my dad to feel badly. Well soon enough they get ready to head out and my sister texts me again. 
My phone beeps; this time she texts a video. I click it without any anticipation of any other emotion than being excited to see a sneak peak of her bootleg recording. Then I see my niece; hair pulled back, oversized glasses, white button down shirt looking so earnest as they sing “in the meadow” and it starts. I start. 

This is chronic illness. It’s ugly and brutal and breaks every part of you. And then you put yourself together again. This is the moment we spare for a few. It’s embarrassing, lonely and some day I wonder if it doesn’t kill me my broken heart will. 

The tears and the shaking and the other 1,000 of things missed and then the anger that if this had happened a year ago w seating restrictions it most likely like everything else would be live streamed. But no; us the most vulnerable have been sliced open again to have our pain pour out of us as we continue life in purgatory for a crime we didn’t commit. The pain in this moment knowing maybe I could have pushed it when I shouldn’t have to but with COVID it is a risk I can not afford to take. There is no mask mandate in the auditorium. There is a more contagious variant looming. I am still not close to recovered from becoming acutely ill with COVID March 17, 2020. I don’t have the luxury of chance. 

The emotion surprised me. It clearly has been festering hidden in the recesses not allowed to show its face because getting through most days has been often too much. I had tricked myself that I was lucky I didn’t have to sit through a middle school winter concert. I had fooled myself I was use to missing things and perhaps they will have a recording so that will work. No it’s not okay. It’s not fair; because there is the capability I could have been there “live” from home. But how quickly everyone forgets what it felt like. The abled. This is the term I’ve learned; the equivalent term that would be unkind to call disabled. I was in a pretty bubble of denial that I was one of them. Tonight I am acutely aware that there comes a time when the smoke fades and the mirrors crack and you can finally see clearly; and you must remember it was a beautiful sight despite the plans that you made…to face unafraid this new wonderland.

Sleigh bells ring, are you listening?
In the lane, snow is glistening
A beautiful sight
We're happy tonight
Walking in a winter wonderland
Gone away is the bluebird
Here to stay is a new bird
To sing a love song
While we stroll along
Walking in a winter wonderland
In the meadow, we can build a snowman
We'll pretend that he is Parson Brown
He'll say, are you married?
We'll say, no man
But you can do the job when you're in town

Later on, we'll conspire
As we dream by the fire
To face unafraid
The plans that we've made
Walking in a winter wonderland
Jeremy Stuart Smith 


  1. Thank you for your honesty, openness. And courage. “You laugh when you can and cry when you have to “ and that ability you still have to do both is a testament to your strong loving spirit. How I wish I could take this cross you bear from you .

    1. Thank you so much. What a great quote. Thanks for letting me know I wasn't noticing comments!! xo xo xo


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