I mentioned earlier this week that my October has been pretty busy – at least, for me! I’ve had both weeknight and weekend plans – book signings, shows – in addition to work, plus the work I do for the blog. I love having plans and things to do – I don’t regret going to any of the things I did over the last month. But for me, saying yes to a fun event is more than just making sure my schedule is clear. There are so many other considerations that I have to keep in mind, and I thought I’d try to explain a little bit.
I don’t talk about it a lot because it’s something that’s normal for me, and that I’m used to, but living with my disability – at least for me! – can be pretty exhausting, just getting through the day-to-day. Normal things like taking a shower, getting dressed, doing my hair and makeup, using the bathroom – they all take me longer than a non-disabled person. So I’m kind of already operating on an energy deficit, just in my daily life.
This means that any time I want to make plans, I have to carefully consider if they’re worth it to me – worth the extra time and energy. Because just like things take longer in my daily life, making plans are a little more logistically complicated, too. Getting ready takes time, and is bit of a game of Tetris. Because I can’t easily use public bathrooms, I like to go as late as possible while I’m at home. But I also have to leave enough time to do the last-minute getting ready things, and coordinate my schedule with my sister’s, because my mom can’t help both of us at the same time.
And that’s all before I’ve even left the house! Assuming my mom is free and able to drive me, I also have to leave extra time to fasten the wheelchair tie-downs in the car, to find parking somewhere that has space for our minivan ramp to unload us, and to walk to the destination, avoiding cracks and bumps in the sidewalk that slow me down even more. And again – all of this is before the plans have even started!!
All in all, it can be a lot. So every single time I’m deciding whether or not to do something, I have to weigh all of these considerations before saying yes. It can be frustrating! Sometimes I wish I could be more spontaneous, and just say yes on a whim and then just… go do it. But I can’t. And it does mean that when I do say yes to something, it’s something I’m really excited for, or something I’m really passionate about.
Sometimes it also means that I have to make concessions – have to say no to things I am excited about. While I’m writing this post on Wednesday night, I’m at home, instead of at Stage AE listening to Reneé Rapp. As excited as I was to see her perform, I knew that I had to put my health first. So sometimes, being disabled while having plans means… deciding not to have plans. It’s all a balancing act – sometimes I get it right, sometimes I don’t, but I’m always learning.