I’ve been sitting with my chronic illness this weekend quite a lot—both literally and figuratively.
I had a five-day weekend. I took a couple of extra days off work, and most of it was just spent sitting. And sometimes that’s hard. I mean, sometimes that’s the goal, but there were so many things I wanted to get done so that Monday, my last day off, I could just sit and relax. That didn’t happen.
I mean, I can still sit and relax, but the things I wanted to get done—I didn’t do them. And that’s hard sometimes.
But I did what I could. And I did accomplish quite a bit. Plus, it’s Sunday, and it’s not over yet, so I’m sure I can do some more. But sometimes I just feel like it’s not enough.
Still, as I sit here and look around and see how much cleaner the house is, how much more organized the kitchen is, I’m going to take it as a win.
The other thing I was thinking about a lot this weekend is my voice.
My main chronic condition is called small fiber neuropathy, and that takes away some of my mobility and my ability to rely on my body, because my body makes its own rules. There’s no homeostasis. I can feel fine and ready to go one minute, and then feel like I want to drop the next. That unpredictability is really hard.
But that part of my condition—the small fiber neuropathy, the dysautonomia that comes with it—has taught me a lot. It’s taught me how to set boundaries. It’s taught me how to take better care of myself. It’s taught me to say no, to prioritize sleep, and not to push too hard.
However, there’s one thing I’ve lost over these last five or six years that I pray almost every day for God to give me back.
And as crazy as this might seem, it’s not my mobility. It’s not my energy. It’s not my get-up-and-go, or my ability to clean the entire house in one day, or to go out and do things without lots of planning—or even having to cancel at the last minute.
The thing I pray, explicitly, for God to give me back… is my voice.
My left vocal cord has become paralyzed. This happened around 2020 or 2021. It’s idiopathic—no one knows why it happened. It could be a million things. It could be neurological. It could have been a virus of some kind. It wasn’t COVID; I didn’t have COVID before I lost my voice. But it could have been anything, and it’s just not something they can know.
And I would give anything—no, I don’t want to say that. I don’t want to put that out there. I wouldn’t give anything. But I would love, absolutely love, to have my voice back.
I used to be able to command a room when I spoke. When I talked, people listened. Now I always sound like I’m crying, and I’m not.
But even more than that, I can’t sing anymore.
I was never going to be famous. I was never going to perform for a living. But man, I loved to sing. I was pretty good at it. I would sing for my husband, for other people, in the car... I just loved to sing. It filled something in me. It released so much stress and tension.
Now I hear those songs I used to love to sing, and it absolutely breaks my heart. I try to sing and I absolutely cannot create the notes anymore. I cannot control my voice to make a melody. That powerful, raspy, soulful croon I used to have is gone.
And it’s very likely never going to come back.
I understand the lesson in my physical limitations. I get it. I don’t understand the lesson in losing my voice. Maybe I squandered it. Maybe God is trying to tell me I didn’t use my voice the way I should have. I don’t know.
Maybe there isn’t a lesson in it. Maybe it’s just one of those things.
But of all the things about my body that I pray to be fixed, of all the things I could pray for, my voice is the one thing I ask for boldly.
And if God can’t give it back to me, I hope He shows me the reason. And if not… I guess I just have to sit with that. But I trust Him. No matter the outcome.
But right now, I really miss my voice. And I would love to have it back.
So if you feel like sending a prayer up for some random internet woman… that would be great.
But for now, I’m going to look around and see what I accomplished this weekend. I’m going to be grateful for the things I do have.
And I’m also going to pray to get my voice back.
I think there’s space for all of it. So I'm gonna let it all take up space. ❤️