I am honestly still kind of in shock that it’s the end of December. I know that people make jokes about this all the time now, but time really does feel like it’s been so strange since March 2020. And somehow, here we are at the end of another year, and I don’t know exactly where the time has gone.
This year was filled with some definite highs. First – getting vaccinated! Being able to get vaccinated early in 2021 really did help start the year on a positive note (if I overlook the stress of actually finding and booking a vaccine appointment). It’s the thing that made so much of the rest of the year possible, and after not going anywhere other than the rare doctor’s appointment for close to a full year, it felt like freedom. I’m still so grateful that I’m vaccinated and boosted.
I also started treatment for SMA (Evrysdi), which is something that younger me never, ever thought would happen. It’s still hard to put into words what a momentous occasion it was for me to start this treatment – for years and years it wasn’t even something that I gave any thought to, because it seemed so far out of reach. Now, the fact that I can take a medicine every day, from the comfort of my own home, is just mind-blowing. It’s an incredible relief to not have to worry quite so much about losing a little bit of my strength or my energy or my endurance – for me, it’s much less about “getting better” (though I wouldn’t say no to that) and much more about not getting worse, or not getting worse as quickly. To not have that hanging over my head every second of every day is huge.
After not traveling anywhere for over a year, I got to go on some fun trips again! I visited Myrtle Beach and soaked up some sun, I spent a long weekend in DC in my new favorite hotel The Willard, and had a super fun trip to New York where I met my friend’s puppy and Billy Porter.
It’s kind of strange to write it all out like that, because it sounds like I was living a lot more carefree than I actually was. I am still living very, very cautiously in my day-to-day life, and am very careful about if, and when, I take risks. Which brings me back to the low of the past year… the COVID of it all.
I don’t talk about it a lot, because I don’t like to think about it too much or dwell on it, but being disabled during a pandemic is challenging, to say the least. It’s not only the actual concern I have about dying or being seriously ill (although that is very, very real), but it’s also the changing relationships with friends and family. It’s not about everyone making the exact same choices that I do – I fully realize that everyone has different needs and risk profiles – but it’s about people who I thought understood me and my life acting in ways that make me think they don’t fully value my life and don’t think it’s worth making sacrifices to protect. It’s a strange place to be in, and something that I think I’ll be grappling with for a while.
So 2021 was a mixed bag for me, as I’d imagine that it was for many of you, too. But I’m going to keep holding tight to the good – to the big life moments, and to the friends and family who have showed up, time after time. That’s what I want to remember from this year.