Both Things Are True

Grief, Joy, my Mom and C9orf72 Disease


Filling Up My Days

I got to Los Angeles on Christmas Day, after five days in Napa Valley with Dawn who was my nanny when I was ten! We drank wine from 1985, watched every Christmas romcom that’s come out in the last five years and even went to see the Nutcracker. It was dreamy being up there with her. I even got to meet a dear c9 friend whose Mom has late stage FTD.

There’s lots for me in LA. Some of my very best friends- I really have a lot of friends here and I’m always making more. A children’s theater that I coordinate costumes for when I need a job. Voiceover classes, auditions, excellent thrifting, cafes, museums, malls, gardens, mountains. Old clothes in the chest, groceries, my childhood bed, Dad and Linda. 

I harden a bit and prepare for “let’s go visit your mom.” This big joy for her that will put a pit in my stomach. I can’t help it. It’s hard to explain, and I worry what others might think of that. They might say “I’m sorry.” I’m used to no one knowing what to say to me. 

We drive together to Better Living, having some totally unrelated little conversation; “Did you see that new Burger restaurant? That’s going to make parking impossible. This neighborhood is getting more and more unlivable!” I feel like Ash Ketchum, wearing my baseball cap backwards like my friend Zoie taught me. 

We ring the doorbell. The pit begins. 

I say a brief hi to the nurses at the care home, then look away from them at my feet, or walk my mom’s room. They didn’t do anything wrong, but I don’t feel like having conversations with them, pretending any of this is normal or good. I’m sure I seem like a surly child. I want to yell Don’t you know who it is whose diapers you are changing and mouth you are sticking your fingers into?! Don’t you know what this is like for us?!! 

Then I plug my phone into the outlet immediately- it won’t distract me. Even though I’d like to mindlessly scroll the whole time. 

“Hi Mommy!” She’s staring at the wall. I get right up close to her face, my forehead against hers. She smiles a tiny smile and giggles a tiny giggle. It’s really weak.

There’s hustle and bustle. Julia sits in the big chair. Linda is in and out of the room, stirring thickener into Macdonald’s iced coffee, talking fast with Jeffrey, the manager, opening a window then closing it a little. Bosch is playing in the background. I feel like a little girl, pushing my bangs back with my fist.

Her eyes are glassy. Her hair is in a single grey braid. Her skin is glowing- it always is. I didn’t get those genes.

I scoot the chair right up to her bed. I’m touching her the whole time. I trace patterns on her hand. Touch is everything. “What are you thinking about, Mommy?” She mutters something. I can’t hear. I tell her all about Napa, Dawn, the ballet, the plane. I wonder what it’s like to be her. What Christmas is like here- just another day.

A nurse comes in to feed her, I move to the side. I don’t watch her being spoon fed. I’m glad she can still swallow, though sometimes it takes coaxing. 

“Judy, do you remember when we used to bottle feed Brooke? It was impossible because she always kept looking around.” 

Linda says “Let’s focus on what’s going on here and now.” But maybe she does remember it. FTD is not the same as Alzheimers. 

I sing a few Christmas carols. I’m really over the top with it, but she doesn’t laugh as much as she used to. I tell her I love her over and over. Linda hands her a candy cane shaped squeaky toy. She can’t squeeze it but she holds it like a precious jewel. 

She yawns and disconnects a bit. It’s time to go. We line up all her toys on the bed. Cat Stevens’ Wild World is playing. I’m a little relieved and a little desperate. Any time I leave could be the last. I want to give her a million kisses, but I give her a single smooch on the forehead. “Bye Mommy, I’ll see you soon. I love you.”

That night at dinner, we order Micheladas and talk about grad school, a ghost story, Timothée  Chalamet in A Complete Unknown, stores shutting down at the Grove. Later as I sit in bed, Poppy is snuggled into a ball at my hip.

Fall of senior year I snapped a photo of a slice of green gelatinous pie from the dining hall, straight out of a Cold War era cookbook. I captioned it “Waiting for something to happen.” I repost it. I watch some stories. Scroll. These days, I’m checking YouTube every five minutes to see if the latest audition I submitted has gotten any more views. I feel empty. 

“How’s Mom?”

“She’s the same- nothing to report.”

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