I’ll wait…
Today I woke up at 5am with what felt like a whole drawer full of spoons. Sometimes the spoon supply is illusion, tempered by our optimism. I made myself some steak and eggs, took two bites, and realized I couldn’t possibly get it down. Steak and egg go to the dog, and it’s at this point I realize that my spoon supply is considerably less than what I’d thought.
Yesterday I was trying to explain the difference between “battling Lupus” and “living with Lupus” to an acquaintance at school. I could tell she didn’t get it. Lupus isn’t my life. I’m not at war with Lupus. If I fought Lupus, Lupus would win. There’s no cure. There’s no out. Lupus is. I can spend every day trying new diets, resting most of the day, taking it easy. WTF am I fighting FOR then? A few less painful days sitting on the couch watching reruns of 80s TV on Hulu?
Rather I live WITH Lupus. Every day I know the consequences of my actions. I know if I go hiking up the side of the escarpment to see the Petroglyphs I’m going to be sick and exhausted and in pain for a couple days. I know that getting DOWN off the rocks is going to be harder than going UP. I know that some days involve carrying a cane, just in case. I know that going to school full time means I’m sick and practically immobile at the end of the semester.
And I don’t give a f*ck.
Because life isn’t the moments I’m sitting on the couch watching Bring ’em Back Alive. It’s the times I’m out scrambling over rocks, or molding clay with my hands, or standing in the studio painting. So THOSE are the moments I live for.
Battling Lupus feels like surrender. Living with Lupus is just … LIFE.
So I’m not surprised I feel weak. I’m not surprised the inside of my mouth is sore, that my blood sugar is way too low most of the time, that I feel dizzy, that my joints hurt, that my skin bleeds. I’m going to school full time. I’ve got finals coming up. I’ve got two art shows to prepare for (and two openings to attend) and I’m moving in 4 weeks.
People WITHOUT Lupus would be exhausted juggling all that.
But I’m going to be reaching my daily limits sooner, so when I go limping home hanging on to the walls at noon, don’t be surprised. And thanks for being worried about me, it shows you care, but really, this is my life. This is what I live with, and to some extent, this is what I choose every day when I DON’T stay in bed.
I do have limits, however. Times when the spoon drawer is empty, and there are no more spoons in tomorrow’s drawer to borrow from. Please don’t assume because I was fine earlier this week, or this day, that I’m fine and I just need to “push through” or “don’t give up” or “don’t get discouraged”. You don’t tell someone to just keep driving when they run out of gas, or when the tires blow. You know that those things can be fixed (at least for the time being) and that they can be back driving again once they have replaced what they need to keep rolling.
For today? Well, I know I’m short. I know I won’t make it through the whole day at the energy level I’d like, but I’m picking up my clay tools and shouting my battle cry.
“SPOON!”
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