Permission to Live

Wow, hi! It feels like it has been approximately ten years since I opened this app and actually wrote anything.

The weird thing about life is that it moves slow and fast at the same time. Being chronically ill does something strange to your sense of time. My diagnosis feels like a whole lifetime ago and also like it was just yesterday, depending on the day.

Life is weird like that.

When I first started sharing my journey it was because I was alone. Literally alone, in a hospital room, with nobody around me who understood what I was going through. I found community online, and I also found it when someone showed up at the hospital with a story that sounded a lot like mine. I am grateful for both of those things more than I can say.

Over the last eight years (wow, eight years?!) this community has shown up for me through the highs and the lows of my own life. But one of my favorite things has been watching what has happened between all of you. I’ve seen friendships form in the comments and bloom into real life relationships and that is something I never expected and will never take for granted.

I will always say that real life beats the internet any day of the week. (IRL>URL) But I also know that when you have a rare disease, finding someone in your own zip code who actually gets it is not always realistic. So this space has always mattered to me for that reason.

That said, I have been head down in my own healing lately. I have been trying to be present in my own IRL community. I have been spending time with my family, the boys are getting so big so fast. I have been living inside of the answered prayers I prayed for when things were really hard, and because of that, time has just quietly passed. God has been so faithful and so kind.

Here is the thing I keep coming back to though. When you are chronically ill, so much of your energy goes toward appointments and medications and listening to your body and just managing the daily weight of all of it. And then one day you come up for air and you look around and realize that years have gone by and you weren’t fully enjoying the life you were fighting so hard to keep.

There is a real tension in that and I feel it in my soul.

I read a quote recently that said the thing people regret most at the end of their lives is not enjoying the time they had, always looking for the next thing instead of being present in the thing that was right in front of them. And I felt that in my bones.

I refuse to fight this hard to stay alive and then not actually LIVE.

So if you have been missing me or wondering where I went, I am always over on Instagram stories sharing the day to day. I am still here! I am still sharing when I feel led. But if you see less of me in this space, just know I am out there busy living the life I have, while I have it.

And honestly, that feels like exactly where I am supposed to be right now. Always thinking of you guys, and you’re always in my prayers.

xo,

g.