living underground in the real world

introductory material

[things start here]

 

I will break this into small parts.

More easily digested. I could just—not.

But that’s not what I will do. I will put it all here. I will bear witness. I guess that phrase was invented for when you tell the truth about death.

My friend Christy is a doula and she talks about how after they give birth it’s important for women to write up their birth story. The opposite has to be good/instructive/therapeutic too. It doesn’t matter what it is because I’ll puke it out no matter what, per my usual practice. I’ve kept a journal since I was twelve (it starts with an account of my dad beating my mother. First page. Literally. Then it talks about a friend of mine who was raped. Lots of 12-year-old sad-face emojis are included. What did you call a sad face before the word emoji appeared? Sad face, I guess. Dash, nor not? I am a terrible over-dasher. My mom was always on me about it. I am stalling. It will be a literary technique I often employ in the next million words you’re probably not going to finish reading. Not sure that’s an actual literary technique. I can look at up, though. In my college book on literary terms, or in my mom’s. I have so many sources now. My college Elements of Style or my mom’s. Do I sometimes stay up all night and compare marginalia.) I’ve kept a journal since I was twelve and now I keep it on the computer and I just did math and my average yearly page count is 86 and 2015s is 135 and that’s not interesting to anyone, it’s a weird sort of trauma humblebrag so I’ll try to get back to the point which is that it’s my nature to ramblingly mull.

 

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I thought I learned a lot in the period between November 13, 2014 and December, 2015, but this month, this sacred December, deposited me into an entirely different space.

December 2015 this month that reached inside my skin and remade me

this month I have to claw my way out of

this month I never wanted to end this month I couldn’t have inhabited for one more instant

I walked sadly but on my feet into December a cherished child I crawled out on my knees crushed sobbing

an orphan

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Now in the blank and endless present every night I stare at the ceiling and think through again the three concepts that circle my brain all day but spread their wings and smother all other thoughts at night

  1. (One): the most frequently thought thought still, even 23 days later – I can’t believe this happened
  2. (Two) – (remembrances of my mother in varying intensities and painfulnesses: her hands her voice her arms her laugh her flaws and strengths and particularities)
  3. (Three) – Time feels mutable and I want to slide through it backwards. This intense longing to operate time differently, to go back “just a little,” (which is how the request is always formed in my mind) is so strange. What I want is not to feel the pain of December 2015 but to feel for one small second what it would feel like to have a mother again. I feel simultaneously warmly close to that feeling (a thin napkin you dropped on the ground under the dinner table just out of reach, your hands blindly feeling the floor unsure if the gossamer almost invisible feeling is it or not) and completely and blackly distanced from it with a huge finality

 

and if I could learn Einstein well enough I could slide backwards for a minute and feel it again. Everything is relative and I want my relative, again.

_____________________________________________________________________________________

 

What I have come to see is that we know fucking nothing about death.

Throughout the first three weeks of December my anguish and sorrow and fear was tempered with an intense curiosity. Is it happening? How will it happen? Will I notice?

Surprisingly hard to say.

 

I will not have children, and when one of my friends asked me to be at the birth of her child I was hugely honored, because there are bedrock experiences that make us human on a cellular level and, I mean: birth and death. Here we are. You should see both of them as a spectator or else are you really living up to your humanity, you know? At least, you should have somewhat of a working knowledge of how they happen. I’m not particularly interested in birth. I’m not grossed out by it I just so fully don’t want my particular body to give birth that my curiosity is muted. I’ve never been curious about death, either, just scared of it in a healthy way. But when I realized I was going to watch someone die I wanted to know: how will it happen.

How does someone die of cancer?

I never asked her doctor this question, because my mother was always in the room. I asked the hospice nurse and doctor later, but death, like everything else about being human, is particular to that human. They gave me generalities.

“The cancer took over.” That’s what you hear. That’s what I saw, too.

“Complications from cancer.” It did get complicated.

I still have questions. I think about calling her oncologist to ask them. Why? I’m not the journalist of the family. I know the outlines. I know I want to call her oncologist because I liked her oncologist, and she liked her oncologist, and we saw her oncologist together, when she was alive, and maybe if I call her she can tell me some little key to make her alive again because she seems so close to being so alive again I mean she just was alive so recently and also: the space between not-alive and alive was so wiggly there, for weeks, and now it’s so, not.

And so since when I really think about it I realize I want to call her oncologist not because I want to understand more about how exactly a tumor in her pancreas made her stop breathing one day though I want that too but mostly because magic I don’t call her oncologist.

 

I think about other things too.

The days are fine.

I’m on vacation and it’s so pretty time off is great getting out of town feels good I drink wine at night I swim I read I’m coming back to myself and I do work emails in the mornings I make plans for the year to come with no caretaking and no huge black fear staring at me every second and it’s fine I’m happy mostly honestly but I still think about things. Of course.

When it gets really late at night and the three thoughts won’t stop their circular whirling through my brain I cut through them with one clean thought, which makes me calm enough to sleep, sometimes. Sometimes I’m taking a step somewhere—at my favorite farmer’s market in the world, on the walk where we go and see whales jumping out of the ocean for no reason anyone can figure out except pleasure at not being dead—and the thought cuts in and I feel elated for a second.

I try to cut off the thought after the second. You can’t keep thinking after you have the first flash of the thought is the thing about the thought.

“I could just go see her.”

I always word it like that. Such a clean, casual, light thought. Daughters go see their mothers. It’s a done thing. I could do it, too. For two years I could. I mean, no one said I could. I decided I could. Because I need a cut-through thought.

Valhalla, New York. Metaphorical, right?

I won’t fucking lie to you.

I’ve Google mapped it.

Seventy one point five miles away. Just over an hour.

If I keep thinking the thought, it gets less clean. It devolves. Unravels. Declension. Slinky down the stairs. Less tidy as it goes. Wobbly at the bottom. Falls apart on the bottom stair, always.

I’ll just drive there. Like, if I’m feeling really bad.

I’ll find the sign.

I addressed an envelope there last week. There must be a sign.

New York Medical College. Department of Cell Biology and Anatomy. Valhalla, New York. 10595.

A weird address, no street number or anything. University addresses are like that.

I’ll park by the sign. I’ll face the building. I’ll cry in my car for a while, I’ll feel some vibes, then I’ll go home.

If I can stop the thought there it still feels fairly clean.

But who stops anywhere where they should.

Mostly what happens is I find the sign, I park there, I go inside walking cleanly, not wildly. I politely ask for where she is. They stare at me. I wonder if anyone has ever asked before. Probably they call the police or something if I won’t stop screaming and asking. Probably I couldn’t stop at just sitting in the car. If I was so close. It’s still a clean thought, sometimes, though. I have two years when I can have the thought. After two years I’ll get a canister in the mail. I’ll have to figure out something to do with the canister.

 

I hate this. I hate writing this. I want to go backwards. I can. Look how easy. It’s called “postmodernism.” What the word metaphores is never the word. Because of this nothing fucking matters. I am the signifier. I am the signified. You don’t even need postmodernism, though. Better off without it, isn’t that always the case. Just plain old “writing,” works, if you need a word. I am inside the text I am of the text I decide what is the text. Unreliable narrator. My narrative unfolds as I demand. Words are an unstable medium, wiggly at best to convey actual happenings. Postmodernism tells us the text is never all. It always fails you. The fact of its creation carries the seed of its destruction: writing is lying by definition. I will use this to my advantage. Fuck Einstein. I have narrative structure and I get to go back at will.

_____________________________________________________________________________________

December 4.

You never want to think about hospice care

Until you do

I think this thought over and over. I step on it rhythmically as I walk through a building I have walked though a lot. I am pushing a wheelchair this time, not for the first time. For the last time, though. That’s a first. The first realization of the last time doing something.

I get to their apartment at 8:30 am because my brother tells me she can’t get out of bed and is calling for me. She’s nowhere. Her body is in the bed but her eyes are darting around, flashing angrily. It takes us two hours to get her ready to go to the doctor. She asks for concealer five times, applies it five times, puts mascara on her face three times thinking it’s her eyelashes. Is angry that I’m hiding the mascara so she can’t put on a fourth coat. Refuses to go to the doctor, begging for one more minute and one more minute until we have to finally lift the wheelchair with me holding her hand and crying and begging her to go to the doctor for me, as a favor. It seems that she’s so scared of falling again that the idea of any motion has started to terrify her.

Editing this today I’m wondering what I was thinking on December fourth. I was terrified, but I was also being the soldier I’d been all year. There are limits to terror when the unthinkable is still unthinkable.

You never want to think your mother is dying.

But then she dies. And you don’t think of anything else.

Not for eighteen more days, though.

[How spacious and good it is to be here. On the one hand being at December 4 means we have to make our way to December 22, which will hurt. On the other hand: December 4 I had a mother so let’s linger.]

Kate drives. I’m not a safe driver right now. Kate is my safety. In the car my mom comes around a little. We get her talking. She doesn’t exactly know where she is or where she’s going, but she offers to treat everyone to a Quiznos on the way home. And she knows she went to Bryn Mawr with Kathy Boudin from the Weather Underground, and that everyone always said Dad looked like Charles Manson. I take secret videos of her talking about these things.

We talk to the doctor for over an hour. She goes through everything. I ask her why she’s become so cognitively impaired and whether or not she might have lesions on her brain, and she says she doesn’t think so, but doing more tests to figure out exactly what’s happening would probably just stress her out more.

Today, in Januaryland, which is as different a country from Decemberville as war-ruined Iraq is from, say, a placid blondwood pourover coffeeshop in Ontario, I am still trying to figure this out. Why did she literally lose her mind practically overnight? It seems to have something to do with her kidneys (or her liver. Or both.) having been invaded by cancer and shutting down, not doing their job, which sent proteins to her brain. Or something.

At the doctor’s office I am sitting in a chair I am staring at my mother who would prefer not to lift her head up I am trying to concentrate on the doctor I am dully realizing what she’s saying:

it doesn’t matter what’s going on with her.

Palliative is the only word that matters. Suddenly we’ve swum up to that edge.

For one year and three weeks I’ve had a job—Cure Cancer—and on December 4, 2015 I give my notice and start a new one the same day: Good Death.

She mostly sleeps through the doctor visit, blearily smiling wanly at her beloved oncologist while she’s examining her.

I ask her oncologist if we’ll see her again, a bit panicky. She is a calm and reserved person, but she gives me a hug and says we can come back if we want. She tells me I’ve done a great job, she couldn’t have had a better caretaker.

 

It’s the start of a lot of people telling me this.

It’s true

and also:

it doesn’t matter at all.

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