Both Things Are True

My mom died almost a month ago.

She was my favorite person. I have never loved someone the way I loved her. 

In the month since she’s been gone, I’ve seen some plays, kissed my friends, flew back to NYC, played The Last Of Us II voraciously, panned my trip to Europe, had a holter monitor track my heartbeat, responded to 200 emails.

My cousin Zettie came to visit me for a few days after she died. We had originally planned to celebrate my Mom’s life then with her family, but decided to wait until we had ashes to throw- some into the Pacific ocean, some at her family’s grave plot, some off the Amalfi Coast. Instead, we walked along the PCH. We told each other funny memories of Judy. We bought a bouquet of wildflowers from Trader Joe’s- something my mother always did. We threw them off the cliff, each saying a few words to her. I felt like I couldn’t say anything. 

People have been recommending me countless grief support groups, hugging me tight, relaying how painful. What they don’t know is that much of the time, I feel… nothing. It will hit me in rare moments, lying in the dark, these words that repeat on loop.

My Mama is dead. 

I feel like Sara Crewe from A Little Princess, another one of my Mom’s favorite movies.

I detached from my Mom a long time ago. As her disease progressed and I lost more and more of her, the strings were snipped, one by one, until in the late stages of her disease I felt better being apart from her than I did being with her.

Even when I visited her at her care home and she would croak out “Can you spend the night?” What a punch to the gut. My heart broke over and over and over and my body and brain decided- enough. Protecting me.

In the end, she died because her heart and lungs were damaged by her multiple infections. We think she had a stroke. Lying in her death bed, there was a point when 6 people were standing around her bed like a maypole. My aunt said “In the Philippines, when someone dies, the house is filled with people, food, children playing, people gambling.” Judy probably would have preferred something like that then the cold silence, Doctor with his stethoscope and other equipment. At least she wasn’t in the hospital. I kissed her forehead repeatedly and said “I love you.” I said some speech to her, words I can’t even recall, something like the typical; “Thank you, I forgive you, please forgive me, I love you.” Then something like… “you are the best Mother I could have asked for.” I meant every word that I said, yet as I spoke it felt sappy and generic. The last time I saw her I was in a rush, trying to make my shift at YADA. I was not with her when she died. I didn’t know what to do. She smelled like death. I was in and out, surrounding myself with my friends. We went to a bar and I sang Paramore’s “Misery Business” at karaoke. She died alone with a Hospice doctor. It was very early in the morning. Unless I had spent the night, there was no way I could have been with her. I still regret it.

I am angry. I’m angry that it had to be her, it had to be me. It had to be FTD and ALS. It had to be genetic. It had to be a slow, insidious progression where she was left without support, medical care and intervention for over a decade. That I had to fight to get her diagnosed, and in the end she didn’t even have a definite diagnosis, nor was she ever tested for C9. So wildly angry that if I think about it for too long, I feel like I might pass out.

And, regretfully, irrationally, painfully, and yet still perhaps most of all, I am angry at her. My poor, sweet mom. I am angry at her. For leaving me without a mother at 29. For not being my mother for the last 10 years. For leaving me when she said she would never leave me. For holding me back. For inheriting this family curse. I am glad I was born, but sometime it is just too painful.

Both things are true.

My mom wasn’t very involved when I was a little girl. She grew less and less involved as I got older. She suffered from bad periods of depression. She rarely drove me to school or a playdate. But when she was available, she was the mother of my dreams. Silly, affectionate, sensitive, intelligent, empathic, when she was out of one of her “grey moods”, she seemed so alive. And I loved her so much. I loved her more than anyone else. I was starved for her. I craved her- her attention, her presence, her warmth, her wrinkled hand. People have really loved my tribute to her, and I just say, “It’s so easy to write about her.”  We were cut from the same cloth. I was always worried that she would die. Haunted by the idea. Visions of her dying in various horrifying ways would play on repeat when I closed my eyes as a child. I would have panic attacks about it. Frantic moments where my heart would beat out of my chest and my whole body would shake and sweat and I would think – how can I possibly live without her???  It loomed over me, haunted me- this pit at the bottom of my stomach- my Mommy could die. 

And then, when I was 13, she did start dying. Little by little. I barely noticed it at first. It didn’t click that something was wrong when she started accusing her close friends of stealing. Or when everytime she moved, there were always unopened boxes lying around that she never got to. 

I counted on her and she wasn’t there for me like a mother should have been. Over and over. I reached for her and she could barely offer me a finger. 

Sometimes, she would be so depressed she’d say she wanted to die.

She was always threatening to leave. As fate would have it, her death was the Long Goodbye. The idea of her succumbing to her illness looming over me and over me and over me, from the moment I recognized her diagnosis in 2023 and had to beg her doctors and my family to believe me.

I have this feeling that it would be unfair to her to explain exactly what hell she went through with FTD, to name each horrifying turn of events in the later part of her life. That it’s something extremely private, delicate. And because her descent into illness began when I was a teenager, it shaped and traumatized me profoundly. Maybe I will, someday, tell her story. It’s hard to know what to do. I don’t want to think of her as how she was deep in her illness, when she was buried in her symptoms. 

Grief feels cold, numb. 

I’ve dreamt about her twice since my dream where I said goodbye to her over the phone. Once it was her in illness, once it was her as she used to be, driving with the windows open, her bright blonde hair blown in the wind. 

This past weekend, I went to End The Legacy’s yearly Summit in Philadelphia. This is their second year, and since last year it’s almost doubled in size. I have a lot to say about this events- some good, some bad. But being in a space full of almost a hundred people affected by genetic ALS and FTD is an extraordinary feeling. I tried to tell as many people as possible about my mom. It’s an enormous thing to carry. And more people carry it than we realize. Rare disease my ass. People affected by genetic ALS and FTD are fierce. It’s a realization so profound it makes me gasp- people reaching for their fate with their own two hands, holding onto burning metal, twisting it, changing it. It is not just me. It is thousands of people around the world, fighting for a future. I am not alone. I am not alone. I am not alone. 

My Mom’s picture sits by my bedside. God, she’d be so proud.