The t-shirts are ubiquitous in MS forums, and I understand the attraction. In the style of Rosie the Riveter, the woman on the shirt shows off an “MS Warrior” tattoo on her bicep. People wear them to their infusion treatments and post pictures of themselves on social media, saying things like, “Let’s do this!” with a determined-faced emoji.
You may have guessed by now that I am not one of them. I sometimes wish I were the kind of person who would wear such a thing, see myself that way, believe in it, be buoyed by it. But I wasn’t before I had MS, and I’m certainly not now. Still, having MS has made me more aware of and grateful for all of the things I enjoy. So much so that I worried my new focus on the positive was causing me to lose my essence, which might best be described as Dorothy from the Golden Girls meets Andy Rooney. “Oh, no,” I texted my best friend one night. “Has MS made an optimist out of me?” Perish the thought.
“Never!” she replied perfectly. (Aside: no one gets you like your girlfriends.)
Another crowd favorite is the saying “I may have MS, but MS doesn’t have me.” I understand the sentiment, truly, but it’s the MS equivalent of the poster where the cat is dangling from a tree encouraging passersby to “Hang in there!” Ugh.
And I guess that’s because I understand that MS does indeed have me. It had me when it stole my vision in one eye, it had me when an incredibly long needle was thrust into my spine, it had me when I couldn’t walk without a cane and had to be hooked up to high-dose steroids, and it even has me when I’m in “remission,” which isn’t as nice as it sounds. It just means I’m not having a major crisis and get to live with the other everyday bothers of life with this unwanted passenger. I’ve been experiencing tingling and numbness on my left side for over a week now, something that’s not supposed to happen because of the treatment I’m on, so MS will definitely have me next week when I make my sixth trip this year into an MRI machine to hopefully help my neurologist figure out what is going on.
Of course, I’m fighting MS in the ways I can. But we encourage as an ideal in this country that if you just have enough will, you can beat anything with determination, a strong spirit, true grit. And that’s simply not true. I hate hearing about people “losing their battle” with (insert your favorite disease here), as if, alas, they didn’t try quite hard enough. Maybe that’s not what people mean when they say it, but it’s always what I hear. They didn’t lose the battle. Every day living with a chronic illness is a win. But you can’t win indefinitely, no matter how hard you fight. The house always wins, one way or the other.
Instead of Rosie, my t-shirt would show an exhausted woman without makeup, hair a mess, eye squinting because her vision never fully returned after the optic neuritis, face red and puffy from steroids. This is not the kind of person who commits to tattoos, so Sharpied on her arm might be something more realistic, if decidedly less inspiring, like “MS Coper.” Maybe I’ll have to Zazzle that up for this party of one.
MS Warrior, I am not. But I’m getting by anyway.