bye, mom

I get a text that my mom’s in the ICU.

I don’t know how bad it is. I already have a flight to see her in four days and I’m not sure it’s worth moving. This isn’t the first time she’s been in the ICU; for years she’s been in and out of hospitals and stuff that used to make us panic now makes us go ‘oh darn, again?’

I ask, How serious is it? The answers are fuzzy, and I am frustrated. I ask my dad to ask the doctor if she thinks family should come. I get the message: “Doc says yes come immediately.”

Five hours later, my sister and I are landing in Boise. We stop by my parents’ house to grab my mom’s car; I collect photos, a blanket I made her, a little stuffed otter. My mom loves otters. I haven’t thought too hard about her dying, I don’t know if she’s going to die, but everything we’re doing feels important in a way I haven’t felt before. We’re shaky.

We park in the freezing Idaho hospital parking lot at 1 am; my sister says it feels like we’re walking through a fiery gate into doom. She’s right, we’re bracing. The edges of reality begin to pulse.

The front desk gives us wristbands, and we begin the long winding walk to the ICU. At the end of the big hall stands my dad and an old family friend I haven’t seen in years. She hugs us and says “I’m gonna warn you, it’s shocking.” She says, “I’m so sorry, girls.”

We get into the ICU, they make us wash our hands. A nurse preps us, says our mom can hear us but will be unresponsive. Our mom might move, but this is instinctual and not conscious.

We go in. My mom is barely recognizeable, shriveled down like her soul is half gone and her flesh is deflating around the space it’s leaving behind. She’s got a tube in her throat and out her arms and neck, wires all over her head. She’s handcuffed to the bed so she doesn’t tear out the ventilator.

My sister and I hold her hands and cry. We speak to her, but there’s no movement, not even twitching. We sob ‘i love you’ over and over.

My dad’s been sleeping in the hospital. We tell him he should go home, he’s barely slept in days, we’ll keep watch over her. He leaves, but we can’t sleep; we sit by her side for hours, staring at her, talking to her. I read her sweet messages sent by people who love her.

I put the blanket I made on her. I’d given it to her last time I visited, two weeks ago. She squealed like a delighted child, but her brain wasn’t working, and she quickly forgot. Any time she seemed distressed, I’d just give her the blanket again - “Look mom, I crocheted this for you” - and she’d drop everything and squeal again, and clutch it to her chest. I got to give it to her probably five times.

We sleep in the room with her, a few hours here and there. I keep waking up with adrenaline every time her monitor beeps, but no changes. Doctors come in and brush her teeth and rotate her body a little.

I remember hearing other people say the phrase “Nobody knew what to do” during crises, but I’d always assumed it was a paralysis around what to do with important decisions like ‘do we keep them alive’ or ‘what do we do with the body’. But here, in the middle of it, I realize it applies to everything. I can’t think at all. The part of our brain that does evaluation, desire, and choice has been completely overrun; when someone asks “I’m gonna grab sushi, do you want any” we stare at them in confusion. I keep saying ‘sure, I guess’ at food offers, and the little room accumulates way too much food that slowly goes bad over days. It’s hard to know when to sleep, or when to trade shifts - we should probably take shifts, right? Nobody has a sleep schedule, we’re running on a few hours each night. All I can remember is that when I got there, I thought at least one of us should be well rested at any given time. It’s hard to track that now. We’re disorganized, our half-unpacked suitcases spill everywhere. The air is different. We keep the blinds to the window closed because my dad has autism, and so we can’t see the sun passing; the only sense of time passing is the pulses of nurse activity outside the door and their shift changes.

We’ve fallen into a crack in reality, a place where the veil is thin and the water is still, while the world continues to eddy around us through the hallways outside.

The doctors come in and give us updates, frustratingly vague. She has acute liver shock, with an AST over 2200. Her brain isn’t working but it doesn’t seem like the liver shock was the cause (low amonia). They don’t know exactly what’s going on, could be a seizure but no observed seizure activity. They don’t say anything about survival odds, even when I ask. I say “Okay, if you had a hundred people similar to her, in her condition, what percentage of them would you expect to survive” and they say “we don’t know, it’s so dependent on the person.” I say okay - “but probably not 99 of them, and not only 1 of them. So if you know it’s not those numbers, what number sounds more right” and they say “Good point,” but still won’t give me any actual number. I want to scream. I say “do you think taking her off life support is the next step”, and one of them, I think the head doctor, says “If this were my family member, yes, I would prepare to let her pass.” I accept it. I sort of already knew.

I am accidentally making decisions about her life. I say “I think maybe we should wait for my other sister to get here, and then we’ll take her off the next morning?” and nobody has any better idea, so I start telling other people the plan as though it’s real.

My other sister is overseas, and it’s going to take two days for her to get here. I grow impatient. I am afraid that if my sister takes too long to get here, my mom might start improving, and ‘taking her off life support’ would no longer be an option. Her surviving is a horrifying option; her life has already been constant suffering before this, and the damage to her body now would mean if she did survive, her quality of life would somehow be even lower. She’s only 66, but she’s been saying she’s ready to die for a long time.

But despite knowing she would not want to survive this, I watch myself pore over her medical records, trying to figure out if there’s anything we can do to keep her alive. I don’t know why I’m doing this. I am looking for an escape from her incoming death, even though I know I couldn’t take it if I found it. It keeps distracting me, I keep impulsively lurching towards it and having to stop myself.

I find I am possessed by gentleness, my movements are heavy with care. I touch her hands delicately, I brush her hair, I kiss her forehead, I tuck the blankets around her just right. I am shocked at how powerful this urge is, it doesn’t feel like a choice. I’ve been hollowed out by love. My care for her seems like clearly the realest thing. All other things in my life I thought I cared about turn into faint shadows in the face of this. It feels like I’m made out of a billion tiny particles that are all pointing in the same direction. It’s here that I am full. Despite my lack of sleep and my grief, I am a white hot light. I have never been so glad to suffer.

Sometimes her friends come in to see her. We stand around her unresponsive body and tell stories about her life. One time there was a hornet’s nest in the back yard, and she went out with a fire extinguisher, determined to kill them all. She held up the nozzle, aimed carefully, and sprayed - but the nozzle was turned backwards, and it went all into her face. We howl as my sister describes her coming back in the house, her hair frizzed out with the white powder.

I’d gotten an airbnb near the hospital, but I end up napping there only twice - once in the middle of the day, when the room was full of people, and again, the night before we kill her. My other sister had finally gotten in from overseas and we let her sleep in the room the final night.

As the scheduled time draws near, everything starts to feel different. Each passing minute is a greater percentage of the final minutes we have with her, getting compressed down, heating under the pressure. By the final morning, the contractions have started. We gather in the room for the last time.

We all leave the room to allow each one of us to say our goodbyes in privacy. When it’s my turn I go in and it’s her and I, alone. I’d already talked to her in the past blurry days, in the middle of the night when everyone was gone or sleeping in corners I sat by her bedside, holding her precious hand and whispering to her. But this is the last time. I tell her she was a wonderful mom. The walls are twisting in, squeezing the words out of me. I tell her I’m sad we ended up such different people, in a tragic, inevitable way that put distance between us. I tell her I’ll miss her. I tell her many other tender things that were for her ears alone. Each second is so loud; there’s so few of them left, and they are screaming.

Finally we’ve all said our words, and crowd back in. We hold her, we tell the doctors we’re ready. We are shaking. I don’t know what to do. We can’t do anything. They tell us they’re going to remove the ventilator, that we can step out if we want. We all say no. Leaving would be profane. I need to be with her through every second of this. I watch them gently unstrap things around her face, press buttons. They say after they take it out, she will probably die quickly. The ground is rumbling beneath us, the air is bearing down; I think my sister is going to pass out and I manage to pull her into a chair. They lay out a napkin below my mom’s chin. “One, two, three,” says a nurse, and they pull it out, the long tube that comes out with a wet noise. An immense, familiar agony is tearing through my body, starting in my lower gut and pulsing out through my arms and pouring out from my hands and the top of my head and the water from my eyes. The final descent shudders with holiness. The air itself is crying out with a chorus of our primal cries, we have no control over our bodies. She’s on her own now, and she is dying. My sister is sobbing “Momma, I love you”. We feel for her pulse, can’t tell if the beat we feel is our own hearts in our hands or if it’s hers. I put my fingers under her nose, feel the faintest air for a moment, and then I can’t feel any more. A moment later the doctors come in - they’d been watching her heart from the outside - and tell us she’s gone.

Almost immediately, a calmness washes over the Crack in Reality, and we sit back, and reality releases its contraction. I’m surprised by how fast the change is; I thought maybe now is when it would be the worst, but these seconds are so soft. We cry softly, and hold her body softly, and watch the blood start to pool on the underside of her arms and the bottom of her tongue. She looks like the renassaince paintings of dead bodies, and I wonder how many loved ones those old painters had watched die. My sister crawls into bed with her and wraps her arms around our mom’s body. I am hyper aware of the blood moving in my body, the pink under my own skin.

This is so weird. I talk to her, but it feels different now. We are in the aftershocks. Her body is a symbol; like her rings we saved, the little locks of her hair we cut, the photos we took of her; her body is like that, now, just heavier.

We spend three more hours in the room before we’re ready to leave the Crack in Reality. We collect our things, and the blanket, and the otter. Leaving her alone seems wrong; I put the stuffed animal in the crook of her arm, wrapping her arms around it, I say she can’t be alone, the otter needs to stay with her so that she’s not alone. This makes no sense; it doesn’t matter, I am sobbing, my love has nowhere to go and so it is leaking out, forcing any action it can through the cracks.

But then I leave, we all leave, dazed and raw, and time goes on. It just keeps going. It goes through her letters, old photos, the funeral, the gathering afterwards. It goes through moments of grief and moments of strange disassociative normality. It goes through dark jokes, and old bitter stories, and sentimental talismans. It goes back out of Idaho, maybe for the last time. It goes through memories slamming into me when I’m trying to sleep, and then through nights of good sleep, and new moments of forgetting. And now that crack in reality lies as a faint shadow over my shoulder. But I can see it still, like it’s a room in my house. Maybe one day I’ll end up back there.

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My mom was the opposite of me in almost every way two humans can be opposite. She was traditional and uncomplicated; she once complained to me she didn’t like these new shows that portrayed the bad guy as sympathetic, that was a level of moral nuance she did not appreciate. She was so devoutly religious, most of you probably cannot actually imagine how much; she loved worshipping Jesus and putting crosses on everything she could. Years ago I asked “when you were little, what did you want to be when you grew up?” and she said “a mom.” She, as far as I know, had one sexual partner her entire life.

I think it’s then particularly remarkable that she still loved me - a famous atheist prostitute. Our relationship was hard because she didn’t want to hear about my life, and all my projects were in some way sex related - but that was the most it ever got in the way. She never tried to make me feel bad or pressure me.

She was far from perfect, but for all her flaws she managed to channel an unconditional love made all the more beautiful by how hard it would be for most people like her to love most daughters like me. In my years I’ve met many a sex worker who talked about being disowned by her Christian mom, but my mom wasn’t that kind of Christian. She was a good one.

A mother’s love is crazy. She poured it all out into my earliest years, when I was still forming in the world. I will forever be shaped by it. It’s hard to look at the intensity of that love directly. It’s blinding. It sort of doesn’t matter who I grew into being, or ways we missed seeing each other each other - she and I are linked at the souls. It’s a heavy thing to be loved so fiercely.

bye, mom. you were wonderful. i loved you very much.

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