The Beginning of Everything

brain to execute my plans. I feel compelled to organize, as though the part of me that can still kind of think is seeking out ways to control this, and this translates to me as ideas like clean out the closet, find a better system for the recycling, fix the squeaky table, gather up those cords, put things in order, make everything clean and understandable, even if it hurts my head to be upright and doing things. Which makes sense because everything is such a fog, everything is floating away from me as I lie in bed after organizing things, my head aching, even as the steroids course through me. I listen to podcasts and play Tetris-like games on my phone, fitting things neatly into other things, puzzling things into place until there’s no more room to fit them. It’s satisfying because right now nothing’s fitting, or perhaps because so many things are flitting away from me. And so it gives me a feeling of purpose, to do things, even if I’m doing them on autopilot: get the plate, put food on plate, bring to table, clear away, place in sink, fold laundry, put laundry away. The pleasure of things where they belong.

It’s helpful, this impulse to do things, but it’s also dangerous, because I can’t properly evaluate whether or not any of the things I’m doing are worthwhile. Some of them are, of course—making dinner for the kids, being guided through the steps as if I’m a vessel receiving instructions from beyond—but maybe if I were fully me, my brain fully working right now, I’d be realizing No, that’s not a good idea, order pizza, don’t stand up and waste time draining more of your precious brain fluid away. Or I’d be making lists of things I’d like to organize and clean and accomplish once I’m feeling better instead of just going along with this primal organizing brain and doing things I don’t really have to do. I go to the paint store and buy paint and paint a bathroom. I spackle the holes in the wall where the towel rack fell out, and I sand the spackled place, and I tape up the molding, and I paint with bright blue paint, and I climb on a ladder, and I get tiny blue spray dots on the ceiling, and in between all of these things I lie down on the floor, listening to podcasts and waiting for my brain fluid to regenerate a bit before I get up and keep going. I go back to the paint store and get more paint and start painting a wall in the basement. The steroids keep me going, but I know it’s not a good idea, that every second I stand up, my cerebrospinal fluid is draining away, my headache increasing. And yet I paint until the small bucket of paint runs out. I lie down on the floor and decide it’s fine to leave the wall unfinished. It’s not even a major wall, not a wall someone would even see if they walked downstairs into the basement. If they happened to go to the basement and turn a corner and then look to the right, they’d see it. But it’s not like it matters. This makes sense to me. This project is done for now. I can finish it later, when I’m healed.

Am I ever going to be healed?

I’m worried I’m going to be trapped here forever. I’m worried this will never go away, that I will always be leaking. How messy of me, how clumsy, how gauche, to be leaking, uncontained, how undignified. I’m worried if it does go away, it will happen again and again. I’m worried I may never fully recover from this. I’m worried about it lasting so long that my symptoms become permanent, even if I do manage to get healed.

This worry isn’t anything that can be seen on an MRI. But that doesn’t mean it’s not there.

The steroids are helping me power through this, but I can still feel everything slipping away. And what happens when this course of medication is over? Will I be debilitated like before? Will my headache return to being unbearable, will my hands disappear, will I be back to being in a permanent state of confusion? The steroids are giving me the imperative to Do Things, but I know how this works. This, too, will slip away, and then it’ll be back to bed, staring at the ceiling, listening to podcasts, tethering myself to the sound of conversations even if I can’t really follow what’s being said.

I can’t stay like this. I need this to be fixed. It’s taking so long. I’m worried it won’t be fixed. The doctors here can’t fix me, they can only give me steroids, pain medicine, blood patches. I’m afraid of having another blood patch, straight-up terrified. And I’m worried that it will fail once again.

Who am I if I can’t think like me? Who will I become if I keep thinking like this?

20

I am an unreliable narrator.

My children bear the burden of my flawed storytelling.

Is the story I’ve been telling them about this divorce, the timeline, the breakdown, the true one? No. But it is the story they can bear. And the story of my brain, of what’s happening to me, of this leak: I don’t know enough to tell them the true story, the full story. I can only flesh out what they already know: that I’m in pain, that I am unavailable to them in a way I haven’t been before. That I look like me, but I am a poor facsimile of myself. My imagined story of what their story of me is now is one of anger and betrayal. How dare I become a ghost, how dare I haunt them from this body that looks like their mother but has somehow given up on being their mother, at the same time their father has given up on being their