I like doing things and going places. Truthfully I do. Contrary to what executive dysfunction, depression and anxiety telegraph to other people, I do enjoy being a person who does things. I enjoy being a part of this great big world. What I enjoy less is all the prep that my involvement in the world necessitates.
Here’s what I mean by prep: everything from anxiety planning (I’m leaving at x time, so I have to be ready by y and it takes me this long to get ready, so I need to be up by this time etc), to making sure I have everything I need to be out in the world for however long. Phone, keys, purse obviously, but also catheters, meds, emergency supplies and my placard. This is all before I’ve even left my house.
Next transportation, who’s taking me wherever we’re going? What do they drive? Can my chair fit in their car? Can I get in the car on my own? Is someone who can lift me *read my husband* coming with in case I hit the ground? Once all that is satisfied, we’re off.
Where are we going? Is it accessible? Not just can I get into wherever it is. Can I move around independently? Can I get to the bathroom? Is that bathroom accessible? Are we eating? What’s being offered food – wise? Are there options I can eat that won’t cause me digestive issues? Am I going to have to wait until we leave to eat something else?
How long are we going to be out? Are there going to be crowds? Lots of conversation? Visual and auditory stimuli to consider? Will I be able to go somewhere quiet if I need to? Can I leave quickly and easily if need be?
All of these and dozens of other questions are things that I have to consider before committing to plans. My contingency plans need contingency plans. And this is for the vast majority of what should be classified as “fun outings”. It’s hard.
It’s hard with people I’ve known for years who are already old hat at accommodating me. Because nothing is ever perfect. There’s always some aspect that wasn’t planned for or something that puts a snag in the plans.
A lot of the time I’m left wondering if everyone else would have been better off just leaving me out of the plans. I worry that planning for me takes away from other people’s good time. These are things I wonder with family. If we’re not related, I’m probably convinced of it. Because it’s always a lot. Always.
The whole Old Man Jenkins vibe is a huge bummer. I don’t want to be a burden. This leads me to decline invitations a lot. Especially plans that just pop up. I either realize I don’t have time to get ready, can’t plan as well as I need to, or I’m already sick and can’t go anyway.
I don’t like declining. Even if I do it with startling regularity anymore. But somewhere between living life and the demands of my disability, it got to be my routine to just say no. I can’t muster the energy necessary to plan to go anywhere, let alone actually go.
But please don’t stop asking. I want to be asked. I need to know you still want me to go do things. Don’t give up on me. I still appreciate it. At the very least I’ll say thanks for the invite.