01/27/2026
January Blog Post
(My Creating Inclusivity site will be back soon, just not in my budget right now, so I’m sharing here.)
When you’re diagnosed in your twenties with a rare neuromuscular disorder, there’s a constant stress of not knowing. Not knowing what the future holds. Not knowing if there will ever be a cure. Not knowing if things will get worse. I can almost mentally handle that since I t feels like a future problem.
What’s harder lately is the not knowing on a daily basis. When I leave the house, I don’t know where the next accessible bathroom will be. And if there is one, will it actually work for my needs? Will the floor be slick? Can I get up on my own? Is there a grab bar, if there is, can I use it? Is the toilet high enough?
Before I even leave, my mind is already running. Is today a rollator day? Will I have enough energy? I hope I don’t fall. If I need a wheelchair, will someone be able to push me? If I sit down, will I be able to get back up? I used to only worry about armrests, now I need a higher seat. If it’s not high enough, I need my Sit’nStand portable lift. If I bring that, can I carry it? Is the battery charged? Do I have a backup if it dies? What will people think when they hear it turn on? I usually joke, “Oh that’s just me, lifting myself up, trying to live a ‘normal’ life.”
These are just a few of the thoughts I have every time I leave the house. It’s mentally and physically exhausting. I plan everything in advance, so if I ask a lot of questions before going somewhere, this is why. I feel safest when I’m with someone, especially when it comes to not being stranded in a bathroom.
Sometimes these moments turn into funny stories later. But the daily struggle is real. I’m not wheelchair-bound. I can walk a little, just not far. My triceps and quads are weak. I can walk, but getting up is hard. And that constant cycle in my head is exhausting.
If you made it this far, thank you for listening. If this helps you better understand someone in your life, I hope you’ll carry it with you and maybe offer a little extra patience, kindness, or accessibility when you can. If this resonates, feel free to say hi in the comments. 💖