February 21, 2023

“Everybody knows that deep down life is as much about the things that do not happen as the things that do…” Claire-Louise Bennett

It’s days like these where I’m so ill that I don’t care that I’m missing out on life. Days like today are simply about survival. It’s a lot of telling myself, “just get through this hour.” And when that hour is up, I tell myself, “okay. Now just get through the next.” And it sucks to live like that. To have to take your life hour by hour because it’s too intolerable to even take it day by day. And it doesn’t get any easier. The hours just come and you continue to suffer. And that’s your whole life. It’s mine, anyway. Some hours, or minutes, I should say, do suck less than others, but they’re always some level of miserable. 

Today was one of those days where I have to eat my meals in pieces – eat a little, lie down, and then finish eating when I feel strong enough to sit upright again. That in itself is exhausting. I don’t know. Today has really sucked. Even my mind feels drained – I can’t really think straight or even verbalize what I’m trying to communicate. This is one of those things where I wish other people just understood it so that I wouldn’t need, or feel the need, to explain. And maybe tomorrow will be easier than today. (They’re usually not, but a girl can dream.) The internal tremors have been absolutely awful. I feel as though someone set the inside of my body on a permanent “vibrate” setting. Or that a million bees have nestled inside me and they’re just buzzing in place. It’s one of the most absurd sensations I experience, actually. I could swear that my bones are rattling inside my skin – and I know that sounds crazy. But most things sound crazy until you experience it for yourself. 

I turn 24 on Thursday. I know it’s going to be hard. I’m a birthday person. Whether it be mine or somebody else’s, I love celebrating. Birthdays used to be about getting dressed up and going to dinner with your friends, planning surprise parties, wearing that sparkly top that would otherwise feel ridiculous on an ordinary day, giving gifts that double as an inside joke, and singing along and dancing to whatever song fits your age that year. Every age I turn now just serves as a reminder of another year I’ve lost. And I haven’t found a way to be okay with that yet. I think there are just some things in life you have to learn to live with, rather than be okay with. I don’t think I’ll ever be okay with it. So I’m trying to learn to live with it. Live alongside it, if that makes sense. All this lost time. There’s something so permanent about losing time. And it’s that permanency that gets me. Knowing that whatever years you lost, and whatever you lost in those years, whether it be opportunities, or weddings, or birthdays, or graduations, or career advancements are just… gone. And it’s not just the big stuff. After being ill for so many years it becomes about all the little stuff. It becomes about all the moments you didn’t get to feel the sun on your face. It becomes about all the days you didn’t get to feel weightless in the ocean or make that chocolate chip cookie recipe you saw online. It’s about all the days you know you missed getting to see the sunrise. It’s about all the evenings you had to miss the sunset. All of it is just gone and over with. Whether you got to experience it or not. It’s just… over. There are no do-overs with time. I used to love my birthday, and I still do, but just in a different way now. It used to be celebratory and signified the beginning of a new part of my life for me. Now, when my birthday comes around, all I can think is, “I can’t believe I’ve just lost another year.” And I know I’m young. I’m in my 20’s. But I’m in my 20’s, and I am so keenly aware of all this passing time living with these illnesses. I am so aware of everyday I lose that it could suffocate me.