5 years.
Half a decade of living with a brain disease.
It still feels strange to say that out loud.
I’ve been sitting with this milestone for a few days now, unsure how to mark it, unsure what to say, unsure if I even want to say anything at all. But here it is: ten years of navigating life with something invisible, unpredictable, and, at times, deeply overwhelming.
I won’t pretend it’s been easy. There have been moments that have floored me, days when getting out of bed felt like a marathon, when my words wouldn’t come, when my mind felt like it was wading through fog. But I’ve shown up.
I think that’s what I’m proudest of.
People often talk about resilience like it’s this loud, heroic thing. But for me, it’s been quiet. Private. A series of small, daily choices to keep going. To keep trusting myself. To keep adapting, even when my body and brain were telling me otherwise.
And yet, I’d be lying if I said I don’t still carry fear.
Fear of what’s next. Fear of what I might lose. Fear that the strength I’ve built could unravel if things shift again. Because they do shift. That’s the nature of this. You never really get to relax into certainty.
But maybe that’s also where the pride comes in. That even in the face of that uncertainty, I’ve built a life I care about. A life I’m proud of. A life with purpose, laughter, and love in it.
Five years ago, I didn’t know what the future would look like, and I still don’t. But I’ve come to accept that uncertainty can sit alongside pride. Alongside hope. Alongside growth.
So here’s to half a decade of living with something hard, and not letting it define me entirely.
Here’s to listening to my body, trusting my instincts, and still believing in what’s possible.
And here’s to anyone walking a similar path, you’re not alone. You’re doing more than you know.
Thanks for reading. 💙
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