Progressing, but still here

I’ve been dodging this post, not because I thought I could ignore it forever, but because putting it into words makes it real. Like, if I don’t say it out loud, maybe I can trick myself into thinking it’s not as bad as it feels. Writing this means acknowledging how much my body has changed, how much I’ve lost—and that’s a weight I wasn’t sure I could carry. But here I am, trying anyway. By it, I mean my progressive multiple sclerosis. This past year has been rough, like losing a little piece of myself every week. Abilities I used to take for granted are just… slipping away, even though we have stopped new lesions from forming. For now.

I mean, it’s not like I wasn’t expecting this. The name of the condition kind of gives it away, right? Progressive MS. Real subtle. But knowing something’s coming doesn’t make it easier to deal with when it actually shows up at your door like, ‘Yo, I live here now.’

And yeah, I’ve been avoiding this conversation because once it’s out there, it’s out there. What if people don’t get it, or worse, act all weird and pity me? Just keep it simple, you know? Like, ‘Yeah, that sucks,’ but don’t make it awkward.

But keeping it all bottled up? Not helping. So here I am, writing this, trying to let it out, trying to find some kind of balance between facing it and not letting it completely wreck me. And it’s messy. But what isn’t.

The thing is: if you saw me six months ago, a year ago? I’m more disabled now than I was then. It’s not like I’m walking into rooms announcing it or anything, but it’s there. I feel it every day. And honestly, the idea of someone noticing—that maybe I look weaker, or I move slower—and being suprised is tough. Sharing this means admitting to myself how much has changed, and that’s heavy.

The other side of it: if I don’t talk about this, if I don’t try to find some kind of meaning in all this loss, then what’s the point? Friedrich Nietzsche said it best: ‘To live is to suffer, to survive is to find some meaning in the suffering.’ And maybe writing this, as messy as it is, is my way of surviving. Of saying, “Yeah, this is hard, but I’m still here, and I’m still finding meaning, one step—or stumble—at a time”.