I’m Okay With That
I’m not sure if it’s a me thing or a disability thing, maybe you can weigh in on this, but I’ve always put in a lot of effort in not letting my SMA interfere with others. Or at least as minimally as possible. For example in a store I’ll make sure to leave room so people can get around me. Heaven forbid I block an isle. At home I wear clothes that I know will be less of a struggle for my caregivers to put on me. Although I don’t compromise on wearing jeans (for you younger generation it’s the leggings of my era.) Recently I’ve made some changes that make my world easier. Unfortunately it adds complexity for others, but darn it, I’m okay with that. Or at least I’m trying to be.
If you follow my vlog you’ll know I converted some of my lights to smart switches. With them I can control the lights with Alexa and everyone else can still use the switch. I had the opportunity to convert the rest of my lights to smart technology however using smart bulbs instead of switches. By doing this I have to leave the switches in the on position. Because I have caregivers coming and going I have sticky notes over the switches with what to tell Alexa. It’s been quite comical seeing everyone’s reaction when they can’t use the switch. Although no one has voiced their disdain with the change I get that vibe from some of them. It’s your choice if you’d rather do the laundry in the dark rather than talk to Alexa. If it means I can control the lights, darn it, I’m okay with that.
My JACO Robotic Arm is also an adjustment for others. Even though it makes my life easier it means more switches to workaround. It also means I like having certain things arranged in a certain way so I can access them with the arm. Apparently it’s a difficult concept to grasp. I’m still working on figuring out how to retrain my caregivers, especially the ones not receptive to change. It hasn’t clicked that if they put the cup in a specific spot now it means they won’t have to get me something to drink down the road. 100 reminders later if it means I can make myself hot cider on a chilly fall day, darn it, I’m okay with that.
Gradually over my 42 years I’m realizing this is my world. It’s okay to make it how I need it to be. If it takes a few extra minutes to put microwavable slippers on me, darn it, I’m okay with that. Will I still move over to make room in the isle at the store? Probably. But not because I feel like I’m in the way. Because it’s your world too, and I’m okay with that.