I hate the unknown. Like a lot. I’m a planner by nature but I also know that I probably wouldn’t have such a fear of the unknown if I wasn’t born with a disability. When you’re living with a disability, every day is the unknown. This is true for everyone really in some sense but it’s very far reaching for people born with disabilities. How much pain am I going to be in today? Am I going to fall? Am I going to have to try to avoid stairs somewhere or having trouble parking at this place or that? Am I going to end up at someone’s house and not be able to get off their super low couch? I’ve said it many times before but when you’re born with a disability there’s just always a certain amount of planning you have to do. Otherwise you could end up not being able to access something or you could hurt yourself or a plethora of other not so great or potentially harmful things.
Combine all of that with a handful of times I’ve tried to be “spontaneous” and things have been a shit show, and here you have it: Jackie is terrified of the unknown. I don’t like not knowing how things are going to turn out, or having not even an inkling of it. I don’t like things being out of my control (i.e. the car repairs that are currently happening on my barely 3 year old car). I don’t like going somewhere new and not knowing what it’s going to look like or if there’s going to be stairs. That applies to everything from restaurants and museums all the way to people’s houses. The older I get, the more afraid I am to go anywhere by myself if I have to walk even a little bit because what if I fall? I can’t get myself up anymore and people have proven unwilling to help me if I do.
I’m weirdly ok with not knowing how my distant future is going to turn out. I try not to think too much about how my body will function or not function down the line but in terms of career, living situation, living location, and all of that other “big” stuff, I’m ok with not knowing exactly how everything is going to happen or not knowing right now what it’s all going to look like. It’s the more immediate unknown that bothers me.
I need to know that I’m going to be ok somehow when I wake up everyday. That I’m going to be able to do whatever is in front of me or get through the day without falling. That’s now how life works of course…for any of us. We never know what each day is going to hold. Sometimes this is good and sometimes this is bad. I’m never going to apologize for needing to plan things ahead of time or being resistant to spontaneity but I do think I can allow myself to let go of the reins a little more. Not knowing doesn’t always equal bad as scary as it is. But boy do I hope my car is done soon!