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And just like that

Posted on July 8, 2025 by

You find yourself back where you started.With a big chunk of time on your hands but nothing to do with it. I try to remember what I used to like doing before disability took over. I used to like to paint. Now I wonder how to accomplish a painting without making a giant mess. I love reading but find that hard to do in the middle of the day when everything hurts and the simple act of turning a page with a simple tap on the screen of your Kindle feels too difficult to accomplish.

My therapist, my beloved Dr. KB has been doing research for me on grants available through the MS Society for adaptive tools one can use for performing hobbies and activities that you once enjoyed.  She has also offered to get the applications completed for me for things like a tilted table for painting on or painting supplies that don’t require the use of water. Water just feels too risky when one is prone to making messy mistakes. I also acknowledged that I might need to adjust my thinking around making a big mess. I need to stop feeling like a paint mess is the worst thing that can happen.  Paint on myself or on the floor isn’t a tragedy but to me it feels like a hurdle that must be avoided at all costs.

And what about he issue of what to paint or what to do with my paintings once they’re completed. I used to display my own work in the house when most of my work was some form of self-portrait as I attempted to ground myself in the notion that a painting ought to display reality in some way but my painting style doesn’t lend itself to reality-based imagery. My painting style is more loose and interpretive. More expressionistic than realistic. I’m not even certain I could find an expressionistic way to find beauty in my current form.

Activities are apparently part of living a life worth living. But which activities will be enough to distract me from my current reality? Turns out that isn’t an easy thing to figure out. From the time I was a young girl, I was never much of a joiner. I lasted about two weeks as a brownie. I much preferred to  use my time with weekly trips to the portable library in my neighborhood called the Bookmobile. The Bookmobile was a converted bus that contained many books suitable for young people like me and my siblings. A weekly trip led to a small stack of titles that would fill out the hours of any good day. All you needed was a free library card – that was your ticket to escape. I’m sure I also enjoyed art projects when I was a youngster but I have fewer memories of art than I have with reading.

Once I’d outgrown the Bookmobile I graduated to the Carnegie Library in East Liberty that was like the Bookmobile on steroids. Again, the library card was the key. I long to find my ticket in reading as I did when I was a child then again I was a generally healthy child with few problems.

Everything feels easier when you have your health. Life hasn’t yet become an impossible puzzle to work out – it flows naturally and effortlessly. The wheels haven’t come off quite yet. Once the wheels have come off all bets are off. You find yourself in the dark, reaching for the light but oftentimes not finding it.

Source: bethybrightanddark.com

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