I have protected them from my pain, because pain is so impersonal, so pointless, when it’s happening to someone else. Hearing about someone else’s pain is like hearing about someone else’s dream: It’s diffuse and nonspecific, no matter how detail-rich the dreamer’s description; always more immediate for the dreamer, more theoretical to the person hearing about the dream. And so they understand that I’m in pain, but that pain is abstract for them in the way someone else’s pain is always abstract, and in the way that parental pain seems particularly impossible. My pain floats around them like a bad dream, intractable, undefinable, and ultimately irrelevant.
They know—of course I have told them—that I somehow have a tear somewhere in the thing covering my spine, the same thing they have covering their spines, that keeps cerebrospinal fluid in its proper place. They know that this is causing a slow leak, that my brain, unlike theirs, doesn’t have the cushion of fluid it should in order to function properly. They don’t know fully why, because I don’t fully know why. I am through the looking-glass, unable to communicate how strange and nonsensical things are from here.
Nate has a daily journal he’s required to keep for a class in school. He shows me one of his entries from when I first got sick. It reads:
5/6/15. My mom is going through a tough time right now. Here’s what’s going on. A month or so back my mom was getting constant headaches. It went on for a few weeks, until my mom saw a doctor and found out that brain juice is spilling out of her brain. Imagine a half-full bottle. When it stands up, the liquid is at the bottom, but when it’s on its side, it evens out. That pretty much explains what my mom has to do, just lie down.
Here he has drawn a diagram, a glass bottle standing upright, half full, all the liquid pooled at the bottom; and next to it, a glass bottle on its side, the liquid distributed along the length of it. This is exactly how I’ve explained it to him, my need to be flat, so that cerebrospinal fluid can reach my brain. His entry continues:
And, on top of allllllllll that, my parents are getting divorced.
There’s a lot of pain I’m trying to keep from them. But it doesn’t work like that. It seeps out, amorphous and uncontainable. I just want their pain to be their own pain, a pain I can help them process. I don’t want them to have to take on the burden of mine. And so I hold myself very still, and try to let them see only the smooth surface, reflecting back at them what they need.
One night, incapacitated by pain, dizzy with the inability to think, I am confounded by the simple process of getting out of bed and making dinner for the kids. This is before Gil has moved out, but he has long been absent, and so I think: Where is their father? I don’t know. But I can’t get up, and the kids are hungry, and even lying flat I hurt so much I can’t think, and I see text messages from them that say things like, “Food??? Hello??????”
I reply to Emi. I type, assisted by autocorrect: “My head is really bad right now. I’ll order a pizza. When the doorbell rings, just answer it and give the pizza guy the $20 that’s on the table.” I’m about to try to find the pizza number when she writes back: “No.”
“???” I respond.
“I’m not comfortable interacting with strangers,” she writes.
“I’m not comfortable with brain fluid leaking out of my brain,” I reply.
This isn’t fair of me. She doesn’t know how bad this is. I have protected her, I’ve protected both of them, from how bad this is.
I see the three dots hovering, disappearing, hovering, disappearing. They don’t come back. There’s no response.
Where is their father?
I order the pizza. I get out of bed. By the time I make my way to the first floor, my head is pounding, throbbing. The static circle of pain at the base of my skull on the right side of my head is a ring of fire, searing me; the rest of my head throbs with my heartbeat. I sit on the stairs, weeping, because that’s what happens when I’m upright now, tears streaming from my eyes even though I’m not sad, exactly, and I wait for the pizza to arrive, thinking to myself, This isn’t their fault, they don’t know, I haven’t told them this is bad, or serious, I’ve tried to protect them from this, I’ve let them think I’m annoying rather than really sick because that’s easier, but maybe it’s not, maybe this is like the divorce, maybe this is a thing they shouldn’t be blindsided by, except I don’t have any words of reassurance about this, because I have no idea when this will end or what the prognosis is or how to break the glass in case of emergency.
The pizza guy shows up and I remember to give him the money, the way I’d instructed Emi, and I don’t even care that I must seem to him to be obviously distraught and crying and pained and confused, I just take the food and close the door and bring the pizza to where
