On Resilience
What being disabled has taught me about getting through the tough parts of life.
This year has been… rough. It’s only the very beginning of March, and I feel like I’ve been through enough for an entire 12 months already. I’ve already talked about some of it - my whole family getting Covid in December/January, and my sister spending a week in the ICU at the hospital because she got much worse very quickly. Because this season is the worst for illnesses, my personal care attendant has had to call out from her shifts a few times because she or one of her kids was sick. While I’m really glad she didn’t come to work sick, it definitely makes things more stressful. We had to say goodbye to our cat, Nala, in February, when the kidney disease got to be too much for her. And my uncle unexpectedly passed away earlier this week, too.
There are also the things happening outside of my personal bubble. I can’t exactly separate politics from my personal life when there are efforts to demonize diversity, equity, inclusion, and accessibility happening on the national level. The new budget proposed by and passed in the House of Representatives contains multi-million dollar cuts to Medicaid - a service that I rely on to be able to get out of bed and use the bathroom every day (I wrote about it a few weeks ago in this post). And then there’s the fact that while diversity and accessibility are being targeted, I’m looking for a (remote!) job in those very fields, because my Center found out last year that we weren’t going to be re-funded, so it, and my position, will no longer exist in a few short months.
Any one of these things would be enough on it’s own. Combined, they have been an incredibly heavy weight lately. Every time I think that things are maybe about to turn around, nope, something else happens and it feels like I’m sent backtracking to the very beginning again. And of course, I can’t just put life on pause while all of this is going on. So I’ve been making the through the best that I can. I’ve felt a lot like the epitome of “surviving, not thriving.” I’ve definitely been leaning into escapism through books and TV and movies… and, of course, some mindless Tiktok scrolling. I’ve been getting involved where I can, politically and advocacy wise. I’ve been finding those moments of joy where I can.
But I’ve also really been thinking about how being disabled has taught me so much about resilence, and how much it’s helped me in times like these. I touched on it a little bit in this post… but it goes beyond just choosing my battles. I have lived through a lot in my 36 years. I’ve had hospitalizations and surgeries. I’ve had to say no to meet ups and trips because I can’t travel unless my entire family does. I’ve spent weekends never leaving my house because I just physically do not have the energy to get ready and go out. I’ve had to purposefully limit my life in the short term, knowing that if I don’t, then my disability will impose those limits on me later on, probably in a much worse way.
Yet at the same time, I’ve known that no matter what tough choices I’ve had to make - no matter when I’ve had to turn down or pass up - the world isn’t going to stop turning. I’m going to go to bed and wake up the next day and maybe still have to make another disappointing decision! But at the same time, I know that I’ll be okay. In some weird way, I guess it’s almost… comforting? I think that’s what resilience is to me. It’s knowing that I can survive hard things - that I’ve survived hard things in the past, and that I will have to survive hard things again in the future. It might be tomorrow, it might be next week, next month, or even next year. But I will keep doing my best to work with whatever life throws my way.
For me, I think there’s beauty in knowing that my strength actually comes from what people think makes me weak. My disability has taught me the resilience that I need to survive in the world right now - even when that world is actively trying to erase me. There’s something poetic about that, don’t you think? So I’m going to keep doing what I do best. I’m going to keep living authentically - day by day, week by week - and keep surviving.
This week on the blog
A peek into my life over the last month in February’s Life Lately
A review of Tilt Beauty, who make accessible beauty products!
What I’m reading and watching
I read The Bright Sword by Lev Grossman this week, which is a retelling of the legend of Arthur and Camelot, by the same author who wrote The Magicians, one of my favorite series. I really liked this one - I know almost nothing about the Arthurian legends, but was still totally able to follow it - and it was funny and irreverent while also having a big heart and being all about what makes you you.
I also finished an ARC of All the Stars Align by Gretchen Schreiber (thank you Netgalley and Wednesday Books!), which I knew I’d love when I read the dedication to all the “visibly disabled girls.” It’s a story about fate, and what happens when you have to decide between the person you’re Fated to be with (capital F Fate, the kind that has magical powers outside our understanding), and the person you choose to be with. I don’t always enjoy love triangles, but this one felt right. I’ll remind you all to read this once it’s out!
I also finished all of the Oscar Best Picture nominations available for streaming! I ended up really being wowed by The Brutalist, even though it’s three and a half hours long. And A Complete Unknown was good, though I’m not super familiar with Bob Dylan’s music and probably would’ve enjoyed it more if I was.
What I’m eyeing and buying
Hotel Lobby’s New York perfume is back in stock!! It sold out super quickly last time, so don’t wait to pick it up if you’re interested. New York is my favorite candle of theirs, and it does not disappoint in perfume form - sultry and sophisticated.
It’s been a pretty light shopping week for me, so I don’t have much to share, but this red and pink crochet style dress keeps haunting me on Instagram, and I just love it! Coming closer and closer to adding it to my cart every day.
As always, your post is though-provoking, deeply moving, and inspiring. Your perspective can't be simulated by people who "imagine what you are going through" so the illumination you provide is rare and priceless. Many of us are engaging in the fight to retain accessibility and DEI, and while individual efforts vary and may not seem significant, our combined effect is starting to be felt and noticed. While not as resilient as you (not even in your league Heather!) we are determined that you will not be ignored or cancelled. Thank you again for your posts and giving your followers pause for reflection, and renewed inspiration.
I needed this post today!