April is always a hard month for me. It’s not just another page on the calendar — it’s the month of my yearly checkup, the one that quietly holds all the questions I try not to ask out loud the rest of the year. How is the transthyretin amyloid cardiomyopathy (ATTR-CM) doing? Is it progressing? Am I stable? Am I losing more function than I want to admit, even to myself?
It starts with the drive. Three hours there, three hours back. My husband Brad has to take me, and that alone is a reminder of how much life has shifted. The old me — the old Faye — would have jumped in the car and driven nine hours without thinking twice. Windows down, music up, not a care in the world. Now I sit in the passenger seat, watching the road instead of owning it, and I feel that quiet ache of what’s changed. It’s not loud, but it’s there.
We get there, and it’s a whirlwind of tests, questions, numbers, scans — all the things that try to measure what I’m living in every single day. And somewhere in the middle of it all, there’s this moment where everything feels like it pauses. Because deep down, I already know. I’ve been writing it, feeling it, living it. Slow doesn’t mean stop.
And then the words come — the ones I dread every year: there is some progression.
It’s like my heart forgets how to beat for a second. Just a second, but it’s enough. Enough to remind me that this is real. That this isn’t something I can outwork or outpray away overnight. But then I take a breath. A real, deep breath. And I gather myself again. Because what else do you do?
You ask the question: What do we do now?
And the truth is, sometimes there isn’t a big, life-changing answer in that moment. Sometimes it’s just… we keep going. We adjust. We learn. We fight in the ways we know how to fight.
I don’t always understand why this is the road I’ve been given. I’ve asked that question more times than I can count. But I do know this — I want to use it. I want to talk about ATTR. I want to say the name out loud, over and over again, until it’s no longer something people look at me blankly about. Because there is a loneliness that comes with this disease that’s hard to explain unless you’ve lived it.
People mean well when they ask, “Why don’t you do this anymore?” or “Why can’t you just…?” And sometimes they’ll pause and say, “You have what?” And in those moments, you realize just how unseen this can feel. How invisible the fight really is.
But here’s the thing — I may not have the same body as the old Faye, but my spirit is still here. My drive is still here. That fire in me that says keep going, keep pushing, keep living — it didn’t leave. If anything, it’s gotten louder.
So I keep fighting.
Even when the days are long. Even when the fatigue settles in deeper than I want it to. Even when the news isn’t what I prayed it would be. I keep showing up. I keep learning how to live in a body that doesn’t always cooperate. I keep choosing joy where I can find it, even if it looks different than it used to.
Because fighting is what rare disease patients like me know.
Not the loud, dramatic kind of fighting. But the quiet, steady kind. The kind that gets up every day and says, “Not today. I’m still here.” The kind that holds onto hope, even when it feels fragile. The kind that leans into faith when the answers don’t come easy.
April may always be hard. I don’t know if that will ever change. But it’s also a reminder. A reminder that I’m still in this. Still moving forward, even if it’s slower than I’d like. Still choosing to live, to speak, to share.
Slow doesn’t mean stop.
And as long as I have breath in my lungs, I’m going to keep going.
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