As a Disabled person you have to be several steps ahead of the calendar … living “in the moment” (this approach can feel like a kick in the gut often) and not because you don’t want to live in the moment but because that’s NOT REALLY AN OPTION FOR EVERYONE IN THIS WORLD…
Stop telling me it is when you do not roll in my wheels.
I cannot tell you about other communities nor can I speak on behalf of all Disabled people (and I wouldn’t dare to) … but for some, to get the “Valentine’s Day” (or birthday or Christmas etc) you have to have planned and hid things and you can be relying on another person to put something where you have asked and that doesn’t happen or it gets moved in an emergency or a ‘routine’ clean that has one thing returned to a place where it was not… then someone moves it again and before you know it it is gone… and you can find it later, or never. The gift or the essential item (medical equipment, personal care products, food… anything) is gone in the blink of an eye and the day may not be wasted, you can still TRY to live in the moment but living in the moment when you are not get basic needs met is actually pretty traumatic. Feeling the part of the equipment’s loss can mean you are unclean, uncomfortable and very conscious of it. Nobody can pop to the shop to get specialist medical equipment at 11pm…
Today (Valentine’s Day 2022) I had prepared as best I could do as to have a surprise for Susan. Nothing too fancy (she wouldn’t thank you for such an item) just … a little something she liked that ALLOWS HER to have a wee minute in the “enjoying this moment moment”…
As ever, plans can be changed in the blink of an eye. We know this. We expect this. We battled this day and daily. Our friends do too.
It’s often something you wouldn’t expect. Especially not if you have never lived it. Food being put above your head where it is not possible to be brought down and cooked and eaten is, sadly, something we did expect as we experience often. So a bag of “easy to open and easy to access” food is on the handle of my commode … easy to open and easy to eat because by the time several attempts have been made at trying to sort the changes to the things you had planned out you are COMPLETELY exhausted: physically, mentally and emotionally.
Whilst eating it you’re aware of it not being a ‘proper’ meal or you remember the comments about your “big bag of junk food”… the intrusions to trying to just be, to just eat something, can be too big to fight.
Then to be told you just need to “keep at it and try harder” to meditate often adds salt to an already several-layers deep wound…
Stop it. You do you. That’s great. I’m not going to tear you done and tell you anything that would hurt you… but to constantly stick to this as THE SOLUTION to difficulties FOR EVERYONE when you move differently in this world is simply unfair and frankly, hurtful. I ABSOLUTELY AGREE that it could work for some and that there are some parts I use to filter out the crazy occurring around me… but it’s just not the same.
We keep at and try hard in EVERYTHING we do … from waking til sleeping… For some, existing is a battle of wits, wiles and you can waken with as much positivity as you can muster, but no amount of enthusiasm gives us telekinesis (as of Feb 2022) nor does it change where critical items are situated…
Her Valentine’s Day present is here for her.
She is not.
This is absolutely a change I did not anticipate. Nobody in our lives did.
I don’t know how to fix it.
I don’t have a magic wand.
I don’t have a Time Machine.
All I know is that the pieces of me that were already exhausted are now shattered into those fragments that slice your fingers to ribbons when you try to pick them up.
I’m fighting the “you can’t win” vs “something HAS to change, for more than just me, this is so so much bigger than me”
For Susan, I want to fight on.
She is genuinely the wind beneath my great big chonky wings.
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