July is Disability Pride Month, so I can’t think of a more perfect time for this post. Growing up with a disability when I was younger was a whole different world than it is today. I basically grew up right along with the Americans with Disabilities Act, so things were starting to change, but it was still early.
I've been having this conversation with my friends - talking about what the last year has taught us, and what changes we've come to realize we want to make in our lives. As things start to pick up again, I start to think more about what I want my resumed life to look like.
I don't know if it's the nicer weather, or the rising vaccination rates, or what, but I've just been feeling like I'm in a really good place lately. The end of winter/beginning of spring felt rough, mentally - I just felt burnt out and overwhelmed but stuck at the same time! I've been more careful about taking time to refresh and relax lately (often on the deck with a book) and I think that's definitely helping. Whatever the reason, I'm glad.
I wanted to do a little check-in today on my post-vaccine life! While I'm still mostly staying at home (I'm still working from home, and it kind of feels exhausting to go out in the world all the time), I'm definitely doing more than I was just a few months ago. It still feels really strange - even though I'm fully vaccinated, and I know I'm "allowed" to be out and about, it still feels almost... wrong? But then once I'm out, it feels completely normal. So it's just a learning curve, I guess! I'll keep getting more comfortable with it little by little.
I shared a little bit about this on Instagram over the weekend, but I wanted to expand on it a little bit more beyond the space allowed in an Instagram caption! I got a haircut over the weekend (my first one since February 2020!) and felt like a whole new woman, basically. It just felt like I was shedding not only a lot of physical weight, but emotional weight, too - it felt like a leap towards normalcy.
I have been waiting to write this post for SO long that it almost feels overwhelming to actually sit down and do it. A little over a week ago now, I officially started taking Evrysdi, one of only three FDA-approved treatments for the disease that I have, Spinal Muscular Atrophy (SMA).
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