I had friends over on Friday night, and it made me think about all the different ways that having SMA affects my social life. Even just a simple night out (or in) with friends comes with a lot of different considerations and logistics! I've talked about some of these things over the years in different posts, so I thought I would put it all together for this week's SMA Awareness Month post.
is over, but that doesn't mean that my disability content stops! I do always have disability posts, regardless of the month - disability is a huge part of my life, obviously, and not something that stops at the end of July. But August is also SMA Awareness Month! So this month, I'll be sharing about disability again, but from a more specific SMA perspective. Since it's the first post of the month, I thought that I'd do something a little more introductory. It's hard to explain all the ways that SMA affects my day-to-day life, so I thought I'd take you through parts of a day in my life to give you a bit of a glimpse.
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.
A lot of times, my life with SMA feels pretty normal to me - I've got my routine down, and I don't feel like I'm living all that differently than everyone else. But there have been times, over the years, where I've tried a little hard to pretend to be normal... and regretted it afterwards. Times when I didn't really fully embrace and accept the impact SMA has on me. So I thought I'd explain a little bit about those times today.
I think it's pretty obvious that SMA affects a lot of my day-to-day life - it forces me to be creative, and come up with different ways of doing things. And sometimes it's taking things and using them in a way that has an extra benefit to me - like the things I talk about in my Accidentally Adaptive series. So I thought I'd share some of my current favorite "adaptive" products - things that I use to make my life a little bit easier.
I thought that for my first SMA Pride Month for the year, I'd start out general, with some assorted basics about SMA and what it means for me and my life.
Since this is my last post for SMA Pride Month, I wanted to end on a high note. I wrote a post last year about coming to the realization that I am defined by my disability, and how that's okay. I wouldn't be the person that I am today if I didn't have SMA - it's had an irrevocable impact on my life. So today, I thought I'd share what I learned from having SMA.
SMA is (officially) a rare disease - it affects about 1 in every 6,000 babies born around the world. That rare signifier means a lot of different things. Obviously, rare means rare in number - you may be the only person you know with your disease. Rare often also means that there aren't many (or any) treatments available for your disease. And for me, especially when I was younger, rare sometimes meant that even doctors didn't necessarily know much about SMA.
I have been living with SMA for almost 34 years now, so I'm pretty familiar with it. I (typically, at least) know how I feel when I'm getting sick, I know what I need help with so I can shower, get ready, all that stuff, and I know to listen to my body and what it's telling me. Sometimes, though, I try to push past and ignore the signs - I want to do one more thing, or stay up just a little bit longer, or go out one more place - and I always end up regretting it.
