SMA Pride Month: What I Wish People Knew

August is SMA Pride / Awareness Month. Each week, I’m sharing a post about what my life with SMA is like.

We’re almost at the end of August now, which means we’re almost at the end of SMA Pride / Awareness month, and at the end of my weekly, dedicated SMA content here. Obviously, that doesn’t mean I’ll stop sharing about SMA and my life – I just won’t necessarily have a specific weekly post centered around it.

For my last post of the series this year, I thought I’d share some things that I wish people knew and understood about my life. I want to share some of the big and small things – the things that you might not realize, or things that I’ve maybe mentioned before but are worth repeating.

My life requires a lot of planning.

I know that I’ve mentioned this before, and I think people get it to some degree… but don’t necessarily fully grasp what “a lot” of planning means to me. I need help with so many things that people typically do without a second thought – getting out of and into bed, using the bathroom, taking a shower, getting dressed, getting food – and that means I have to plan when I’m doing all of them, too. I need to make sure someone will be available to help me do all of these things!

Living at home and having my parents available as caregivers takes a tiny bit of the need to plan away (though not all of it, because, of course, they have lives too). But when I lived alone and had only paid caregivers, the need to plan was even more intense. I didn’t have 24/7 PCAs, so if I needed help with something, I needed to make sure I was getting it done during their scheduled shifts, or else it wasn’t getting done for another 4-6+ hours.

I’m mostly used to this, and it’s pretty much second nature to me now, although there are still moments every so often when it’s frustrating! But I really appreciate when friends are understanding and willing to work around my schedule, or when they themselves are planners, too. It just makes things a little bit easier!

I want to talk about SMA, but I don’t only want to talk about SMA.

This one is a little tricky to explain, but I’m going to do my best. I’m not in any way ashamed of having SMA – it has been a journey over the years to really fully accept and even embrace my disability, but I’m feeling pretty good about claiming it as part of my identity these days. I obviously write about it here, I talk about it pretty openly, and am more than happy to answer questions and share details of my life with friends.

But that doesn’t mean that I want it to be the only thing I talk or write about. I do want people to know about SMA, but I don’t want it to be the only thing they know about me. I want people to ask questions about it, but also ask about my weekend plans, or what books I’m reading, or my favorite place to travel. Because I want people to understand that SMA is absolutely part of my life – a large part – it’s still not the only part of my life, and honestly, probably not even the most interesting part.

Sometimes my life is harder.

I worry sometimes that in sharing my day-to-day life, which feels relatively “normal,” I’m occasionally downplaying the reality of what living with SMA, or any disability, can be like. Sometimes having SMA, and dealing with everything that comes along with it, feels like a second job (a third job in my case, I guess?). When something unexpectedly goes wrong – I get sick, or one of my parents gets sick, or my PCA has to take off – life is kind of thrown into chaos. The smallest change can create pretty major ripples in the finely tuned machine that is my daily life.

So for all of the normal parts of my life that I show, I hope people understand that having SMA, and being disabled in a world that is not really built with disability in mind, is harder a lot of the time. I’m often tired by the time my day is starting, just from waking up early enough to get through my morning routine in time to start my day. It might be normal to me, and I might be used to it… but that doesn’t mean it’s easy. However, with all of that being said…

You don’t need to feel bad for me.

I don’t spend my days feeling sorry for me, and you don’t need to, either. In fact, I’d really prefer if you didn’t. And I’d definitely prefer if you didn’t tell me to my face that you’re so sorry and you don’t know how I do it mere minutes after meeting. I don’t view my SMA as a bad thing. Yes, it might make my life harder sometimes, but it has made me into the person I am. To me, having SMA is normal – it’s the only life that I’ve ever known! Please don’t feel bad for me because of it. That’s the whole point, to me, of highlighting SMA Pride Month – I am proud of who I am! And I hope other people start to see that, too.

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