Both Things Are True

Grief, Joy, my Mom and C9orf72 Disease

Category: Uncategorized

Ramblings

Last night, I thought about bedbugs. This morning, I woke up seeing black dots swirling around my vision- I jumped. I had an anxiety attack- am I starting to see things? Am I going to be like my mom? I’m just full of feeling- restlessness and this buzzing under my skin.

I don’t know what else. I don’t know how to start writing about myself and my experience again after what happened in my city this week. It’s so fucking unfair and cruel. Some people have the ground ripped out from under them and some people don’t. How was my neighborhood safe when childhood friend lost everything they ever had? Material things are important. The Hollywood fire was contained so quickly- a night of frozen terror turned into relief. This time, we were spared. I have trouble believing it when miracles happen these days.

For a while, I told people I was avoiding collective trauma- that I had enough going on to behind to be able to focus outwardly. But this cascade of events as our planet is destroyed is coming for all of us. Even those of us who are still comfortable- who posted stories of their latte art when others posted gofundme’s for their sibling’s neighborhoods burned to the ground. I open the groupchat for Sunrise climate action on WhatsApp- I’ll make a meeting this week, finally. I want to do something.

I was in Los Angeles two weeks after Christmas. Something happened, which I won’t go into here, and I wasn’t allowed to see my Mom in person anymore. Hours before I hopped on the red eye back to NYC, I pressed my face up against the dirty window by her bed, my face covered in black dust so she could see how much I wanted to be with her.

“Goodbye, mama. Goodbye. I love you so much. I love you.” Linda’s hand was on my lower back.

A sleep later, I’m back in the human rat maze. My roommates are out of town. So I’m here in my apartment alone, flipping through my planner, responding to emails, trying to keep busy. Linda calls me with my mom on FaceTime- I really don’t know if she knows it’s me on the screen. I go through the motions and she stares and grunts in response.

This past week, a doctor showed me a picture of my brain. It was from two years ago, when I had an MRI for migraines (I had them from a period of about 4 months in 2023.) It was a normal MRI. I saved a picture of it. I keep looking at it. It looks like every other brain I’ve ever seen. I noticed how tiny my head seems, how slender the outline of my neck is. My eyes white bulging bulls in my fragile skull. Another reminder of how delicate our bodies really all. My stomach dropped to my feet when looking at the photos- I felt like I was staring burr holes this reality- my healthy brain. I texted a c9 friend about this feeling- she texted me back; “It will always be healthy… We will get that cure that’s out there..”

I went to 5 auditions this week, sung my little heart out in front of older white men who stared through me. No word.

Last week I gave myself a project in therapy- I would clock (not change or challenge, just clock) every time I feel disconnected. My thoughts spinning while someone is telling a story, forgetting myself in my headphones. I feel hands on my shoulders. My friend is moving my body because I didn’t notice I’m standing in someone’s way. Checking of reality. Checking out of my grief.

Of course I disconnect. God, of course, it’s not confusing. Who would want to be connected to this? When my first love and my favorite person is dying in the most excruciatingly slow, horrifying way I’ve experienced. We come by things honestly.

The next time I write, I’ll have had my first visit with ALS Families Project, a research study for presymptomatic people at genetic risk for ALS based out of Columbia. They are going to stick pins in my fingers, have me breath as forcefully as I can into a tube, ask me to count backwards by 3s from 100. I will be tested for c9orf72, and my result will be available to the researchers. I’ll be offering my body and data to help people like my mom. I do this because this is bigger than myself- this is so much bigger than being afraid of pain, or worried about feeling like a lab rat, or knowing my genetic results are so easily accessible. I want to be known and remembered as someone who fought. This is what I can do to create a future free from ALS and FTD. It might be possible.

January 20, 2025
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.”

January 1, 2025
God, I am so lucky

I got to be all over the country in seven days. LA, Chicago, NYC. Got through a whole chapter of Ace Attorney on the plane. These past few months have felt so much like evidence for my patterns- things going wrong; that I’m cursed, that only bad things happen to me. I count things I’m grateful for like precious beads. Maybe I’ll wear them like a rosary with more belief next year.

My mom came back to life as I visited her for the three days I was in Los Angeles. She spoke three words that weren’t just her echolalia- “no more, thanks”- when she was done with her soup. I wasn’t there to hear it

So here we are back again. She’s alive and yet she’s lost a little more this last illness. She’s taken to moaning and grunting instead of “yeah” or “no”. She can’t squeeze her squeaky toys anymore. She still giggled each time she saw me- her husky, weak little laugh. For a while a few years ago, the biggest reminder of the person she used to be was her bombastic, wild laughter. Now as she struggles to cough, she can’t howl like she used to.

There are good things- always some good things. My family and I more in synch in how we care for her, what we want for her. I’m surprised at how my family is taking this revival- we were making funeral plans. And now she’ll keep on, but suffering a little more than she was before. We all want her to stay- and hope she doesn’t suffer much longer. Both things are true.

A little over a year ago I became familiar with an organization called End The Legacy.- a group that advocates for those affected by genetic ALS and FTD. I was on a call today. Another SOD1 patient (a different genetic cause of ALS than what my mom has) talked about their symptom improvement and reversal on Toferson, a drug approved last year for SOD1 patients. It’s wildly exciting to hear about ALS patients being cured. And still my heart aches- why couldn’t there be any treatment for my mom? When other people are being cured why was she forgotten?

I won’t listen to any more promises to my mom about taking her out of her care home to see the ocean- not unless there are plans to make it happen for real. It seems so impossible. What else can I do for her?

I sing to her. Every visit. Sometimes it’s a big show- I take my stage in front of the bed, put in a YouTube karaoke track and really perform. Other times it quieter, and I rock her as I sing “If I Loved You,” “Mister Snow,” “The Age of Aquarius,” “I’m in Love With a Wonderful Guy.” Sometimes she mouths along! It’s so astonishing- music and art carries us for life.

I lost my wallet and keys this US tour, but I feel more excited about my opportunities and projects.

I share stories with whimsy and empathy, inspiring joyful connection and hope.

I cringed writing this blurb, an exercise in my goal setting class about playing to win- the game of life, that is. 40 days ago, I made a Letter of Accomplishment about everything I want to accomplish by January 20th, 2025. 17 goals I will have accomplished by then. By then, I will have written and posted 13 letters to my Mom.

December 16, 2024
I Start Writing Again

I’m making my second- to- last bicoastal trip this year. The flight is 5 hours. I’m sitting in the exit row. They asked me if that was ok with me. Like there was some reality where I’d emerge from our wreckage with door in hand like a trophy, saving us all. I sit and imagine a situation where I’d miraculously survive like that- it passes the time while I limit myself from my phone- 3 hours left and I’m only at 32%. I need it for my Uber home. I’m attached to the idea of surviving.

I’ve seen videos of what my mom looks like right now, been on FaceTime with her mouth full of carrot juice while she struggles to swallow. The corners of her mouth were sharply turned downwards. Maybe she recognized me at that time. She groaned more looking at me. But her eyes didn’t light up, so maybe she didn’t. It’s hard on a screen.

I spent my summer in LA, visiting her twice a week. It was painful, but I did it and I witnessed some real life magic at that time in some surprising things she said, a few hearty laughs and us singing together. Since I saw her last in October, she was hospitalized for Covid (it flourishes in care homes.) Soon after, she developed a UTI and was hospitalized again. At this time heavy antibiotics were administered that had minimal effect on the infection. She was sent home and left untreated for a few days, got so much worse, and ended up back at Cedars-Sinai for the third time, this time with an added blood clot in her lung that was discovered last minute. She was saved from that quick death. It’s ironic she’s ended up in the hospital so many times- her Power Of Attorney, our close family friend, refused to take her to a clinic for diagnostic testing and a blood test. “We’ll test her when she’s next hospitalized.” Now she’s hospitalized and they can’t test her. I was strongly in favor of her being tested over a year ago and desperately tried to change her POA’s mind to no avail. Her fear was that she would be traumatized in a medical setting.

After 10 days of refusing food and being placed an an IV for hydration, she slowly began taking in fluids and soft foods again. At that time it seemed like she might recover, albeit only to some degree. I’m reminded of what it is to see someone through hospice, where my mom was moved a few days ago. This seesaw of emotions and possibilities, sewing up my own wounds only to start bleeding out again. I did this with my Grandma and now two years later I’m back with my mom. God, I’m sick of being here alone. I want people to know her. I want people to know what happened to her.

I wanted to stay in NYC. I didn’t want to be back in LA. I thought my Mom would want me to be living the life of my dreams, having big adventures, not tied down by her illness. Yesterday was the blow- “She’s emaciated, has several bed sores, can barely mouth a word, is barely eating, she’s lonely and in a lot of pain.” I booked my flights without thinking,

Being at this part of the story feels like being in a movie. I’ve been waiting for this for so many years, dreading it, wanting it to come sooner, imagining what it would look like- exactly what colors it would be. And here I am in real time helpless as walls I started building when I was 13 years old are torn down- my detachment from my Mother battling my grief. My Dad’s words soften the challenge of feeling anything- “She’s been waiting for you to come say goodbye.” And I’m hunched over in silent sobs in my plane seat while people beside me read their screenplays and watch cartoons.

Like in Little Women– the tide comes slowly but it can’t be stopped. I’ll walk alone through the Valley of the Shadow.

December 13, 2024