I just discovered Disability Pride Month last year, really. This year, if I had more time and focus, I would have done more, planned more, written more. I have not had the time, energy, etc, and even today, when I tried to record a reel on Instagram, guess what? Instagram was erroring. I recorded the entire time, and then messages that it was “too short.” What is that supposed to mean? As it was, I was editing myself to get everything in that needed to be said. So irritating!
So, my youngest and I painted rocks this afternoon. I spelled disability incorrectly on the rock! An i instead of an a.
My intention is to spray them, and then take them to the library where they have a rock area between the building and the park. Do I fix the spelling. It will also irritate me if I don’t.
I feel so much less imposter syndrome this year. Four years ago, there was a debate about whether it was hypermobile EDS or SPS (Stiff Person Syndrome). Three years ago, another neurologist informed me that it could be both, and was indeed both. His last day in the state was today. Hopefully, I have enough refills of my meds, especially my ivig. I have been using my crutches long enough that most people know me with them. I use my wheelchair when I can, and am more confident in my Ambulatory wheelchair user status.
I have read and/or listened to lots of books since last year, and many of them include disabilities and chronic illnesses of various kinds. I have learned of some that are more rare than mine! This books also make me want to write. But. It’s summer. I have much loved children. However, they do not give me enough time to get hyperfocused enough to even complete this post!
Leisl Jaberg 