Both Things Are True

The 2025 NEALS CRLI felt so right- there is so much I can’t control. But here- something I can control, something I can DO. I sat at a table with two women in their 30’s affected by ALS- we later gabbed over cocktails in the hot tub. I mingled with all sorts of people- diagnosed, caregivers, at risk- drawn together by this “shit hand.” Dr. Bedlack wore a Pokemon-themed custom-made suit for Comic Con week. A kindred spirit. There were presentations on basic ALS biology, how to read a research paper, and so many ideas- TDP-43, glial cells, inflammation. Different approaches to treatment. 

I set my goals in advance- the main one was to talk about FTD, which I’ve heard referred to recently as “ALS’s neglected cousin.” How very true. I feel so confused on how FTD and ALS are such siloed fields in terms of research when there is so much overlapping biology- specifically for TDP-43 disease. I asked two questions about FTD, with nothing more than the intention to put the idea in people’s heads that these diseases exist on a spectrum. I could see the surprise on the speakers’ faces- and also the gears turning. I was later highlighted in End The Legacy’s weekly report- gah! What a feeling- like I really am doing something to expedite research, get more drugs that work into humans. I can’t wait for more. 

It’s thrilling to be in ALS spaces. And, in some sense, it feels like I’m not supposed to be here. Afterall, my Mom never had an official ALS diagnosis.

It’s hard not to believe FTD is the worst disease. My mom’s main source of suffering- for over 10 years- was FTD, not ALS. I wasn’t there to watch my Aunt decline with Bulbar-onset ALS. I did my best to indicate to my Mom’s care team that she may have ALS as well as FTD- the foot drop, head drop, stiffness in her hands, the twitching, her low oxygen- but it was brushed to the side by the power of attorney and even the neurologist. Granted, when an FTD specialist took a look at her, he knew immediately she had motor symptoms, but the people in charge of my mom’s care didn’t facilitate continued visits to that doctor. I jumped over hoops to try to get my mom an ALS diagnosis- it’s as simple as that. With an ALS diagnosis, a patient immediately has access to so much more support- clinics, nonprofits, clinical trials, Expanded access Programs. I tried, and it didn’t happen. I wasn’t her POA- there was nothing I could do. 

As much as I talk about ALS- because I need to- what I really know is FTD. I’ve known it since I was a preteen. 

Even in FTD advocacy, I’ll often see posts from caregivers of “what crazy thing my loved one did today.” It fills me with rage. It’s why I left most FTD support groups. People with FTD deserve as much care, empathy, understanding, support and hope as people with ALS do. 

Two days before NEALS I spent a day at Disney with my dear friends from college. I really wish I lived in that farm house reconstruction in “Living With The Land.” I started feeling unwell, but I brushed it off and felt fine during the conference. Later, when I got back to New York. I completely crashed. I was out of commission for a week.

In 2022, I had a mild case of some viral infection- I tested for Covid twice and was negative but I did lose my sense of smell. Right after recovering from the fever, I was hit with a range of debilitating symptoms that landed me in the ER- a couple of times. I was diagnosed with an “atypical migraine.” Since then, three years ago, I’ve experienced periods- or “flares”- of debilitating symptoms- weakness, dizziness, nausea, palpitations, horrible pain- in my chest, back, arms, stomach. Especially after kneeling and standing, which I do often for my online business. When no doctor could figure out what was really wrong with me, I was the one to notice my symptoms lined up most with POTS, or Postural Orthostatic Tachycardia Syndrome- dysfunction of the nervous system that can affect the heart and other organs, often triggered by a viral infection. With heart conditions running in my family, it’s been quite an ordeal. 

And of course, it’s a year wait to see a dysautonomia specialist unless there’s a cancellation. In the meantime, all doctors can do to manage my debilitating symptoms is tell me to eat a lot of salt, wear compression socks and exercise. I have beta blockers already prescribed by my cardiologist months ago.

When I first started having symptoms- unexplainable pain, twitching, even fainting- I was sure it was c9 related. Even though I haven’t tested- it is so horrifying to live with this kind of risk.  

I try to talk about these diseases to my friends- people who otherwise would have no reference point. In some way- there’s no way for me to explain what it’s like to think about ALS and FTD every day. But I have to try. I’ve always worn my heart on my sleeve, tried to be vulnerable in the service of connection. 

But my friends get to have one conversation with me and then put ALS and FTD behind them. They get to go home, get in bed and put their head on the pillow believing that they have time- that they are going to live a long life. For me, there are two possibilities. I comfort myself by thinking:

In ten years, either there will be a cure for ALS or humans will be wiped out by AI, an unliveable environment, nuclear war. It’s so strange- I both can and cannot imagine myself getting sick. With c9 nothing is known- will you lose your mind, your body, or both? 

In recent news, Huntington’s disease has been treated. A gene therapy administered through brain surgery that slows disease by up to 75%. If it will ever be approved by the FDA to treat HD is another issue, but here we are, living in a reality where Huntington’s is treatable. Over and over again, leaps and bounds are being made- Toferson, Jacifusen, drugs to treat nano-rare causes of ALS,  many approaches to Progranulin- and still, nothing for C9. or sporadic TDP-43 disease. Nothing that will save anyone in my family. 

Women in my genetic ALS and FTD support group this week were talking about MAID. 

I will do everything in my power to give more people more options than that.

A week ago I poured a bamboo tube of my Mom’s body in powder form into the Pacific. Two days ago I was accepted into the 2025 NEALS ALS Clinical Research Learning Institute® (CRLI), in October in Florida.  I’ve also been accepted into the ALS/MND Association’s 2025 In Person Patient Fellows Program in San Diego in December. I guess both programs were pretty hard to get into this year. In my applications, I wrote what I know, as I always do, and they saw me and chose me. That’s a pretty refreshing feeling after 3 years of auditions and callbacks without being chosen. 

I don’t know exactly what to expect from these programs, but I know they will help me to better understand the clinical research and the therapy development process for ALS, and make me a better advocate. I’ve already decided that it’s my mission at these conferences to talk about FTD. To be loud about it. ALS and FTD exist on a spectrum and in both genetic and sporadic cases, some patients end up with both, like my Mom. There are a lot of resources for ALS patients, and far less for FTD patients. I can’t imagine how differently the last 15 years of my Mom’s life would have looked if she had been diagnosed with FTD when first presenting with symptoms to medical professionals. Meanwhile, my Aunt, first presenting with ALS, had immediate access to a clinic, trials, EAPs and support. Early diagnosis will be especially important when treatment options are available. Even Riluzole, a drug known for modestly extending survival in ALS, is almost never recommended for an FTD patient, although the likelihood that it would slow FTD progression is high. I’m dying on this hill. 

Even though I’m not feeling as much sadness as I feel people expect of me- I am grieving. 4 months. I’ve met two “Judys” in the last two weeks- my eyes grow wide. I feel the gravity of this loss in my bones- in my attachments and detachments, my anxiety, weeping over the smallest inconveniences, my leg shaking, asking for reassurance over and over. Her disease and her death has made a permanent wound on my psyche.

I don’t like it when people tell me I’m “strong” or even “resilient.” Maybe it’s just that I’ve heard it a thousand times. I just smile and say, “Thanks. I didn’t really ask to be strong. I just love life.”

So strong and so weak. So resilient yet I could crumble over missing the train. I try to offer myself grace for shortcomings knowing what this all has been like for me. I feel like a little girl. I lie awake at night and feel the world crashing down around me- will I be able to make my dreams come true? I seriously doubt myself. I doubt everything. I despair.

And then, somehow, I wake up the next day and somehow I believe it could be better. I get up and I do things and I go out and I do more things, all in service of something. And I love it. I love to explore, to engage, to give, to protect, to connect, to create, collect, curate- as beautiful a life as I possibly can. I do think I have a countenance passed down to me from my Mom. I just keep moving forward. Even though I can’t begin to imagine what it looks like, I believe in the future. I’m hopeful. 

I spoke with someone who told me that after their Mom died, they started experiencing “little gifts from her.” Things have been challenging- hard- for a while. As someone once told me, I’ve continued to deal with a “shit hand” for quite a while. This past year has been especially brutal. But it’s hard not to see these new opportunities as a gift from my Mom. It hurts to think about- to imagine the look on her face- how amazingly proud she’d be of me. She always believed that I could do anything. I will ask her for some strength when I steel myself to shoot down to Clearwater to engage my “science brain” for the first time. I set up a little visit to my friend in Orlando and a day at Disney and bought myself a cute notebook for notes because who am I if I don’t add whimsy to everything I do. I may even meet Dr. Bedlack who is known for his ALS efforts and wacky wardrobe.

 I can’t wait- I’m so ready to be a part of all of this. I’ve said this before but what really moves me in the ALS/FTD space is research. I really think we are so close to treating TDP-43 dysfunction- a protein that is the disease driver in sporadic as well as multiple genetic causes of FTD and ALS. So close to having better resources for those diagnosed and those at risk- so close that soon presymptomatic patients may be involved in clinical trials, as early treatment may be key. And unlike much of performing, this work feels so tangible, so actionable, so personal.

I love many things in this life, and I am determined to find a way to piece it all together. After all- the Madonna Inn (you gotta google it) is my favorite place in California. I believe in maximalism, abundance for all.

I lay with my gown open, craning my neck to stare at my heart wiggle and dance on the screen. My valves flapping like fish gasping for air in black and white. The tech pressing the probe hard against my breast bone, having me hold my breath over and over.

Here, vulnerable, I think about all the people who don’t like me. People I’ve loved who didn’t love me back, friends I’ve lost, people who I didn’t get along with from the beginning. Every falling out I’ve had- when I’ve made amends and apologized to no avail, been blocked, ghosted, forgotten. Every time it “wasn’t a good fit” or was “unforgiveable.” No matter how much grace I had for them, when I was ready to forgive and they were not. Makes my heart grow three sizes bigger on the screen thinking about it. 

Mild tricuspid regurgitation. 

Every time I’ve lost a loved one I’m blinded, I think- Life is just pain. And pain. And some more pain. Why do I keep living? My fingers growing numb, as cold as the ultrasound probe, my heart in my esophagus. I stare at How to Survive the Loss of a Love- green, blue, yellow- colors that scratch a little itch, the color of a 90s windbreaker. I read it for the third time.

I’m tracking everything I’m grateful for. A European summer, my cousin’s wedding, meeting my sweet baby niece, hiking in the alps, visiting my dad, and so much more. So lucky. I am trying to live with an abundance mindset- we all deserve everything. And that includes me.

No structural heart disease, I was cleared to go hiking.

A day before beginning the last two stages of the Tour De Mont Blanc, I had a devastating friend breakup. There I was in Copenhagen, walking the streets of Vesterbro and staring into space, my mind and body swarmed with pain. And pain. And some more pain. Tears falling into my Hugo Spritz. I failed to be grateful here- even while traveling abroad. The story was I ruin everything. 

I joined for three days of this wild hike to challenge myself- to stretch. Zettie, Midori and I set intentions before we set off. They had hiked the PCT together- from Mexico to Canada. I told them I wanted to lose my ego, and connect with my mom. This was my first time ever backpacking, and right off the bat we were met with a huge uphill climb. My pack heavy strapped to my torso, my poles failing to support 40% of the weight. Midori told me “our bodies seek homeostasis- here we are resisting that- pushing past it.” Zettie told me “I hike so I can surrender- surrender to nature, to discomfort, to be tired, hungry, stinky.” How can I surrender? It was some kind of ego death- lost in desperation, with not enough breath to talk, climbing the Alpine Path. And my mind swirling with all of the colors of my losses and what could or could not happen in the future. Camping was easier than expected. It really was something to not look in the mirror for three days. I’m currently having the worst breakout of my life, but that’s a story for a different blog.

Cold in my sleeping bag, I imagined my mom was holding me. When the breakup happened, how I wished I could call her. She was always the one I would call, the one I would pick out of a sea of everyone I knew. 

Near Refuge La Flégère, our tents stood near the ledge of the mountain overlooking the valley. Here across from the dense spikes of Mont Blanc, I pictured some medieval castle hidden in the mountains. I dream of another reality, something nostalgic, ancient, magical. I comfort myself by thinking of other realities. I try to understand reality by dwelling on the past. I self-soothe by dissociating from pain.  

I finished the hike grumbling, complaining about pain in my toes, shoulders, hips, ankles. So totally myself, so totally ego-full. I asked Zettie, “Did I act how you thought I would act on the hike?” 

She said “Yes.”

I’m glad I did it. It will probably be a long time before I attempt my next dream hike- from  Idyllwild to Big bear on the PCT. It’s ok. It’s so good to know myself, have a little more empathy for myself, remember that we come by things honestly. Everything is transient, even the biggest feelings. A few days later, I feel like I’m uncovering some treasure in the truth. It’s ok: you do not have to like me. I like me. You do not have to forgive me. I forgive me. The right people will stick around. Maybe the one instance in which I believe “what’s meant for you will not pass you by.”

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.

My mom died peacefully the morning of Wednesday, May 17th at 6:45 AM. Within one month of her sister Donna. During ALS Awareness Month and the month right before summer, her least favorite season. She was 72. She had suffered from FTD and later ALS since around 2008.

She was my first love and favorite person. Many people are special, but no one has ever been quite like Judy. She was one-of-a-kind, soulful, adorable and hilarious. I wish the whole world could know her. She was warm, generous, intelligent and curious about people. Everyone wanted to be her friend. She had a wicked sense of humor and a silliness that she valued above all else. Her laugh made people turn their heads.

She was born on August 21st, 1952. The third child and first daughter to Lenore and John Ellis. At her birth, she needed lung surgery in order to survive. Her mother named her Judith after St. Jude, the patron saint of hope.

Judy grew up in Dearborn, Michigan with her four siblings, Robert, Keith, Donna and Joan. As a child, she was happy-go-lucky, curious, adventurous and loved animals, rescuing them off the street and bringing them home to her mother’s chagrin. She was especially proud of her pet guinea pig. She was left handed. She would spend more time with the neighborhood boys than the girls, playing kick-the-can until the sun went down. She was heavily involved in Beatles-mania. She could be very shy and demure but challenged herself to be more outgoing by sitting on a park bench and waiting for strangers to sit next to her to strike up conversation. She was always so timelessly beautiful and yet she hated her square face, big forehead and chin that stuck out. She always looked very young for her age and had no wrinkles up until her death.

She was extremely creative, multitalented and a genius with words and language.

She went to college at the University of New Mexico, majoring in journalism. While there, she participated heavily in hippy culture and experimented with spiritualism and psychedelics. After college she worked as an Au Pair in Italy with her sister Donna for a little girl named Simona. She did not speak a lick of Italian. She fell in love with Italy and always dreamed of returning, but never did. She moved to Los Angeles along with her whole family around 1975. She first worked for an Investment Advisor where she learned how to invest, a talent that came naturally to her. She then dabbled for a bit in real estate. For a while she worked for The ABC Entertainment Center Tennis Club as co-manager and bookkeeper. She briefly worked at LAX TSA where she nabbed a drug dealer with her incredible instinct. She became a freelance Journalist for community newspapers and eventually was hired as West Coast Special Correspondent for Life magazine. She interviewed dozens of celebrities including U2, the cast of Cheers, those involved in the LA riots, and Jerry Seinfeld, who was smitten with her.

She and my Dad met by chance at a party in 1984 and fell madly in love, getting married a year later. They always had dogs, mostly sheepdogs. They would call each other “Moo” and it became a running joke among friends and family, until they had garnered enough cow-themed gifts to last a lifetime. They traveled to Carmel, New York, Chicago, Paris, Perigord. They lived ten years together before she became pregnant with me.

In the 80’s she was commissioned to write a book about surviving cancer. Cancervive was published in the early 90’s. Her project during much of my childhood was research for a book about tomboys, taking from her own childhood, a book that never came to be. She expressed herself best through her writing, her words careful, irreverent, particular, and so very her.

She was multifaceted and gifted in so many ways. She had a shoe painting business. She handmade cards, crafting little faces out of buttons, beads and feathers. She drew Dr. Seuss-like comics of goofy characters. She practiced calligraphy. I deeply admired her art and would always attempt to copy it. Together, we would craft little angels out of seashells- one of the highlights of my childhood. She could play Joni Mitchell’s River on piano beautifully but never sang, shy about her voice.

I saw her wear a dress maybe three times in my life. She was self-conscious about her skinny legs and the scar on her back. She was always mistaken for Diane Keaton and looked just like Annie Hall in her trousers, long sleeved top, loafers and hat. Layers, always layers so she would never be too cold or too hot. She always wore a hat when leaving the house, usually of the bucket variety. She wore vintage gloves while driving to protect her hands from the sun and drank coffee with a straw so her teeth would stay white. She introduced me to the magic of thrift stores from a young age- she always found the best pieces and I marveled at her enormous vintage collection- especially her collection of white blouses and eclectic scarves. She wore makeup obsessively until a year before her death. She applied lipstick in a way that it always became a round bullet-shaped nub. I found that so satisfying.

She loved art, books, music, TV, movies and musicals. Favorites were Joni, Cat Stevens, Beethoven and Mozart, Coldplay, The Colbert Report, John Stewart, documentaries, Anchorman, There’s Something About Mary, Dumb and Dumber, When Harry Met Sally, South Pacific, Sweeney Todd, Oklahoma, Carousel, Cabaret. She introduced me to Da Ali G. Show and her favorite character Borat when I was way too young, and it was one of our favorite things to enjoy together. We would quote the movie to each other and laugh and laugh. When I was in high school, I got her into South Park and she absolutely loved it. She deeply enjoyed the uncouth, irreverent satirical, goofy and bizarre. Along with comedy, she specifically loved horror movies. We would watch a different one on Chiller together every weekend during my middle and high school years.

She was raised Catholic but later rejected organized religion. She hated swimming and the beach. She hated rap music. She hated injustice and sobbed when Al Gore lost in 2000 and while watching documentaries about MLK Jr. and JFK. In college she was involved with Students for Democratic Society. She had a deep love for history- she collected antiques, devoured books about the Civil War and the history of Los Angeles and TV shows and movies like Frontier House, Boardwalk Empire, Deadwood, Ken Burns documentaries, Kingdom of Heaven, Shakespeare in Love. She tolerated my teenage obsession with anime and video games but clearly was not a fan. Her anxious habit was picking her nails until they bled. She dyed her hair brown because she resented the idea of being a California blonde. She always deeply loved animals, especially her dog Poppy, who she took to the dog park ritualistically every day. After my parents divorced, she would drive us to a neighborhood with fancy houses and we would walk around with the dog for hours.

Multiple times a week you could find her splayed out over the Yoga ball, lifting weights while watching a movie. She took great care of her body. She was obsessed with eating healthy and was mostly vegetarian except for the occasional beef stew recipe passed down from her mother. She was always drinking watered down gatorade- people used to joke that she should have had an IV of it. Other favorite foods and snacks were kefir, stevia-flavored coffee, oatmeal with bee pollen, Kookooroo, the restaurant Lemonade, yellowtail collar at sushi restaurants. She would play a repeated joke on me where she would pretend to have something small and precious in her hands for me and then it was the skin of the kiwi she had eaten. She rarely drank but enjoyed the occasional red wine. She was always anxious about stomach ulcers, as her mother died from stomach cancer. Judy later went on to survive a cencerous cyst herself.

She had a lower voice than I do and a roaring laugh- her laugh was such a big part of her I can’t stop talking about it! She had certain sayings and phrases that I’ve gone onto adopt;

Well I’ll be darned!

You’re telling me!

You got that right!

I tell ya!

Well, that’s the way the cookie crumbles!

(to me) Hey Kiddo!

Her feelings were always big- her highs were so high and her lows were so low. Her beloved mother died of stomach cancer shortly before I was conceived. Then her favorite sister and confidante, my aunt Joan, committed suicide when I was in utero. I was almost miscarried and survived, her miracle baby. She loved me more than anything. She suffered periods of great depression all throughout my childhood but always put on a smile for me.

Up until the very late stages of her disease, she had a way of being and a quality to her presence and voice that could make anyone smile. She was so animated and, although she suffered great losses and periods of depression in her life, always radiated joy and love. Loved and loved and loved with her whole self. Could enchant anyone she met. People were always falling in love with her. Just a shiny person.

Her love for me was fierce and radiant. She was my person and my confidante. I would tell her all of my secrets, my joys and my sorrows and she would laugh or cry with me. I had struggles in my childhood, but she would always approach me with deep empathy, holding me and saying “You’re sensitive, just like me. I love you.“ When I was sad or anxious as a child, she would put her cold hand on my forehead and say “put all those bad thoughts right here kiddo,” and then pretend to throw them away. We were extremely affectionate with each other. She would climb into bed with me to snuggle or read me ‘The Magic School Bus”, both of us laughing at the illustrations. After my parents divorced, she and I slept in a bed together. She was wild about my art, writing and singing. She always told me I reminded her of Joan. She was so proud of me. My anxiety as a child was centered around her dying. I would hold her hand in a death grip, hanging onto her, watching her, protecting her. I know find myself constantly reaching for the hands of those I love. My love for my mother unlike anything that I’ve had for anyone else.

Her illness caused her incredible trauma, pain and despair. There are many ways that C9orf72 can present, and I believe she endured one of the worst presentations. FTD and ALS are two of the most horrifying diseases you can imagine. And yet she held on- telling me “I’m not going anywhere Brookita!” As bad as things got, as much as she suffered, she loved life. In the late stages of her disease, she refused a DNR. She wanted to live.

I don’t know if I’ll ever really see her again. I hope I will. I believe I might. I hope I can squeeze her again. Until then, I see her in my dreams. The morning she died, I dreamt we talked on the phone. She said “Hi Brookie! They’re telling me I’m gonna die in a few days. What the fuck??” In my dreams she is whole and well, funny and so very much herself. I sat in a hot tub in my friend’s backyard the day after she left her tattered body. There were these gusts of wind- over again through the trees in the garden, hitting me in the face, making me gasp. The smell of gardenia… her favorite flower (besides pussy willows!) I believe it was her. “I’m not going anywhere! You’ll never get rid of me kiddo!”

My Aunt Donna died two weeks ago of ALS.

My Aunt had bulbar- onset ALS. This means her speaking, swallowing and breathing were affected first. She did not have FTD (as far as I can tell.) We texted sometimes. She was in various clinical trials and expanded access programs. Sometimes she’d call me by mistake and I’d hear her grunting and gasping- she couldn’t talk anymore. She and my Mother had a complicated history. They never connected during their diseases. Donna was excited about the future for me and her three sons, all at risk. We talked about that hope. I told her I was involved in research studies. In her last text to me, she said,

“You are a hero for ALS clinics.”

I’m spending as much time with my Mom as I can this summer. In my last week in NYC, I took part in two research studies- ALLFTD and a Metabolic Study through Columbia. AT ALLFTD I went through hours of cognitive testing and had my first lumbar puncture.The cognitive testing was not very stressful for me- it felt like a game. As for the spinal tap, I hunched over on the table as the doctor stuck a needle into my spine to access my precious CSF. Just like acupuncture, I felt the pain higher up on my back then down where the spine was tapped. It made me really nauseous, but I was well enough later to go see Gypsy starring Audra McDonald. The metabolic study was a day of various tests including a metabolic chamber, a full body Xray, 3 urine samples, 3 blood tests, etc. I have a little glucose monitor on my arm as a continuation of the study. Findings for this study so far suggest that c9 carriers have lower BMIs than non-carrier controls. I don’t know if I’m a carrier but… I’ve always been small. My mom and her sister were always small.

I’ve been visiting her every day. Sometimes she is a little responsive, other times minimally responsive. There are sweet moments where she reaches to hold my hand. They are clawlike, twitching, cold in mine. She can follow instruction, and I wish she had the resources to communicate better.

She’s surrounded in her specially pressurized bed by her stuffed animals, a babydoll with eyelashes she likes to feel, squeak toys, photographs. 

There are moments where she’s staring at me with this look on her face- this look that she’s in pain, she knows she’s dying, she’s so sorry how hard it is for me, she’s so sorry she has to leave. I look out the window, she hums reflexively. I heard words in my head

My heart is broken

Everytime Linda and I visit, we bring her a treat. She loves apple pie! Other times, shortcake. I sit there at the foot of her bed and hear them coaxing, “Swallow, swallow!” It’s getting harder and harder for her. Sometimes Linda tickles her throat. I grit my teeth. If I were my mom, I would hate that. There’s a woman down the hall who constantly screams ‘Help me!” I close the door. My mom hears it every day. These poor women. 

Two years ago I was at my friend’s house and I took a hit of his weed pen, like I had done many times before. Suddenly, I felt really unwell. I stood up from the chair I was standing in, took a few steps and slumped to the floor, unconscious. I woke up a few minutes later.

My friends convinced me not to call 911, even though I felt so sick. They convinced me that I was hot, dehydrated, stressed and tired.

I found out a few days ago that its possible a heart condition called Long QT Syndrome runs in my family. This time on my Dad’s side. This is a condition where the time where the heart rests in between heartbeats is longer than average. It can go undetected until a significant event, like fainting… or cardiac arrest, occurs. I mean, I could have fainted for plenty of reasons, but. I will see an electrophysiologist, have a baseline EKG, a stress test where they measure my heart rhythm while I’m running on a treadmill, and a 24 hour heart monitor.

It’s so bizarre to focus on anything besides ALS and FTD. At least this condition is currently treatable. The trauma of genetic diseases- I’m moved to prioritize this. I feel my heart thumping like a frog jumping in my chest, or I feel the muscles in my chin twitch for 45 seconds and I think 

My body is broken.

But it’s not. I’m here and alive and I think I’m gonna be ok. I am not my Mom. Her getting worse does not mean I’m getting worse. In fact, I’m so committed to meditating on my physical strength and wellness that I will be hiking the Tour de Mont Blanc this summer (more on this soon!)

I will also be attending my second annual End The Legacy Summit in June. How sweet it will be to be with those who understand what this is like. When someone asks me why I’m so invested in ALS research when I don’t even know if I’m gene positive, I remind them I’m not just fighting for me. I’m fighting for all the incredible friends I’ve made who are at risk. That’s what my Mama would want me to do.

When I was around five years old, I was in the car with my nanny, Aura. I had a lot of nannies- a regular Mary Lennox with her Ayah. We were driving through Beverly Hills, maybe on our way to a playdate. Through my closed eyes, the sunshine coming through the windows was the color of apple juice. I hummed into it, taking a mental snapshot of this moment-the warmth of the car seat, Beverly Hills, golden apple juice. I added it to my Rolodex of memory- hanging onto hot monkey bars, my purple backpack, kindergarten teacher in her orange dress, Michelle’s Scooby Doo blanket, Cyber Chase at Poppy Jack’s house, Mom’s cold hand on my head. I remember exactly what it was like to be a child- to laugh all the time, create elaborate imaginative scenarios, awe at the universe, feel everything so intensely, recall and notice time pass, my body changing. Time moves, days like pearls falling off a string. Today I work to connect to reality- notice each moment.

Back in LA for two weeks to go on a ski trip with a few friends. Again, I tell myself I’m so lucky. Skiing almost twenty years later! A dream come true, checking it off on my bucket list. I’m working on a Cabaret about Literary Heroines that will premier in a week…. I will sing some Jerusha Abbott, Anne Shirley, Beth March, Jane Eyre with an astonishing (wink wink) cast, talent and collaboration and storytelling that feels like a supernova, so very alive.

On my third to last day in town, I was given the clearance to visit my mother again. It’s been almost two months. She recognized me, of course. There were tears in her eyes. I put my face centimeters away from hers to tell her “Thank you, I forgive you, please forgive me, I love you” as if it was the last time. She mouths it back but no sound comes out. Bulbar effects? She mouths along to “If I Loved You” too. 

Her right hand can barely move at all. Her left hand has more agility. Small miracle- she’s left handed. She’s surrounded by stuffed animals, pictures of the BeeGees and me as a child, still holding onto that photo of her mother. She’s so, so tiny and skinny. She was always bird-like, but now she’s just like a baby sparrow, reliant on someone to feed her, dress her, hold her hand. I know she’s aware of what’s happening to her body. I know she’s scared and confused and in pain. I just want to scoop her up. I make plans to come back to LA right after my show to be with her again.

The governmental budget cuts could severely impact ALS research. Still climbing the Alpine path, I feel like I’m running uphill against a wind, working and working and working and watching paint peel from the walls. 

I can see my DNA, this unstable gene in my mind- like anything could tip it over the edge. What I eat, how much I nap, being under stress, if I cry too much, if I feel too much, anything triggering a tsunami of neurological events- protein aggregation, neurodegeneration, motor neuron dysfunction, melting, shrinking, apoptosis, death. Will it just start one day- Like Mary Ingalls from Little House on the Prairie, waking up blind and screaming for Pa? Or will I not know, the changes sneaking up behind me, covering my eyes with a few fingers, more and more until I can’t see at all?  I just got over the flu-possible inflammation of my lungs and my brain. Bad news bears. So far, besides a few extra twitches, my body seems ok. 

If I’m positive- and If we can protect research on C9orf72- I might not die like my Mom is dying. It’s compelling, overwhelming to think about what a treatment might look like- especially CRIPSR. I’ve heard that some people will die from the procedure as they try to figure out how to deliver this therapy to the brain. It might be very painful, some big delicately planned surgery, or months in a hospital bed, chemo, transfusions, dialysis, who knows.  I’d much prefer this- some unsure, bloody, trembling and complicated attempt to grab fate by the hands and twist it around. Doctors fighting to save my life instead of “there’s nothing you can do- go home and get your affairs in order.” 

I feel like I have five minutes to draw as many pictures as I can- flowers, rainbows, clouds, hearts, planets, hands. Two hands holding onto each other, or holding something small and precious.

Care homes and wheelchairs and Trazadone and marijuana and essential oils and Boost, cigarettes and beer, saliva towels and clinics. Last time I was in LA, I had lunch with a different nanny from when I was an infant. Over her omelet she said “It’s too fast. Tomorrow will be Christmas again.”

To get close to feeling at peace, comforted by benign reality. You wake up, stumble downstairs to make your coffee, sit and ground yourself a bit to start your day before an influx of emails. Live a bit, get a little mad, a little outrageous, a little high, a little disillusioned, a little bored, a little tipsy, a little passionate, a little anxious, or nothing at all. And then everything changes! Your loved ones die, your own face changes- things you will see or do for the last time and not even know it, like folding up the parachute at school or feeding your Tamagotchi. Time keeps spinning and spinning and spinning and you and everything you love is stuck in centrifugal force.

When it comes to my Mom, I’m losing her yet I’m finding myself saying things she would say 

“You got that right!” 

“Well, I’ll be darned!”

“You’re tellin’ me”

Or even saying “kiddo” to one of my kids or some surprising word that makes her face appear and I’m caught again in this battle- I want to be like her! I don’t want to be like her!! She’s not her disease! She’s not- right? Both things are true. She’s been through hell. And she’s a wildly tenacious yet vulnerable, brilliant yet sometimes crass, glamorous yet understated, creative yet traditional, silly yet complex woman. This is how I will remember her. I say a prayer that I can hold her again. 

My mom’s diagnoses are tentative. She doesn’t  have ALS “for sure.” She doesn’t have FTD “for sure.” She doesn’t even have c9 “for sure.”Like the life is being sucked from her by some mysterious ancient curse. The “Ellis curse” as my aunt calls it. I make assumptions about her disease progression based on evidence, on her decline and her sister’s verified condition. She’s bedbound, losing weight…. It’s astonishing that she can still talk, given how late in the disease she is. This is very rare. “I love you, too,” She doesn’t cry, even when she’s in pain. She sleeps a lot. What is it like to be her? Is she closer to the other side- the unknown, the universe, the oneness? “Death as an opening, an opportunity for more.” Linda says she prays for an angel to come wrap their arms around her and take her in her sleep. 

Last time I saw her, she was on oxygen. Why are her levels falling? Her lungs have probably been affected, but no one would know. She hasn’t ever been to an ALS clinic.

She holds onto a picture of her mother. She stares at it all day. My Grandma who died before I was born of stomach cancer. Her name was Lenore. She was gentle, poised, silly, beautiful beautiful beautiful. She would rub my mom’s ear when she was falling asleep, same as my mom rubbed mine. In this black and white photo she sits in a one piece swimsuit on the beach. It’s probably around 1952. She’s a bombshell blonde, straight out of a pinup calendar. Judy says, “That’s my Mother,” The first words she’s uttered in a few days.

I think how interesting it is that I’ve always been drawn to medicine, learning about the body. I love medical dramas, physiology in high school, Untold Stories Of The ER,  the Wii game Trauma Center. There was one point where I considered being a doctor- I can imagine the rush of working in the emergency department. And here I am facing a Medical Odyssey. Serendipitous. Life is surprising.

One of my favorite mangas is Black Jack by Osamu Tezuka, who basically created the art form as we know it. This series ran between 1973 and 1983, and it’s about a brilliant unlicensed doctor who performs miracle surgeries for millions. The scenarios in these vignettes get outrageous, horrifying, tender, hilarious, bizarre, metaphysical, cosmic. I wonder how Dr. Black Jack would have cured ALS. 

About a year ago, I started getting fasciculations- muscle twitches. All over my body. In my feet, thumb, behind my knees, my back, biceps, ribs. Twitching is an ALS symptom. I feel like I’m on constant earthquake watch- though I know fasciculations have many causes. I watched my mom’s muscles tremble in her hands when she worked to squeeze my palm with a few fingers. 

Aside from twitching it’s my ears ringing, pain in between my eyebrows, forgetting Bob Odenkirk’s name for a few hours, my legs feeling weak when I pick up a baby. It could start so many different ways. It could be anything. I breathe into each small gift of the day- tingles when my friend braids my hair, soaking my tension away in the bath, a very dirty Vodka martini, scoring the perfect vintage bomber jacket, that moment when you truly connect with someone and you get to watch their eyes sparkle a bit. This is all we have.

I’m working hard. Mostly babysitting- piecing together my gigs, different kids and babies every night. Sometimes I teach little girls how to make necklaces with tiny glass beads at birthday parties. Sometimes I sing “Let It Go” as Elsa. In my costume, I look at my arm and see the hole by my elbow healing- this tiny surgery- a skin biopsy- performed by Dr. Harms my last research visit. I’m watching it turn into a white freckle of a scar.

This past month, I was called back for three musicals. For one of them, I had to learn and record 8 minutes worth of material, two full songs and scenes. The casting team watched less that 30 seconds of it. I’m tired. I love the work but I hate the industry. It matters so much how you look, how high you can scream-sing. It’s pageantry. I want more.

I’m so happy I started writing again. Here I am in control, vulnerable, powerful, completely myself and a generative creator. I made a call to see how I can be more involved in End The Legacy last week. Maybe I’ll take online classes in fundraising, statistics, biology. When Sonia Vallabh found out that Prion disease runs in her family, she went back to school to become a scientist and works on developing preventive drugs.

“When I read that the flash came, and I took a sheet of paper. . .and I wrote on it: I, Emily Byrd Starr, do solemnly vow this day that I will climb the Alpine Path and write my name on the scroll of fame.”

I can’t wait to see what’s next. And next and next and next. 

The summer before freshman year I visited my cousin Zettie and her girlfriend Aly at their intentional community in Ann Arbor. The grass is tall and the humidity makes my skin itchy- but it’s sweet. My Mom grew up here. One morning, Zettie and I make our go-to breakfast- jammy eggs with lots of salt on thick seedy bread, steamed greens on the side. “I had a crazy dream last night,” she says. We both have crazy dreams. “I was watching this theater piece- this dance- about this terrible disease I had never heard of before. And I can’t remember much about it other than it was so beautiful and so moving.” Zettie chooses her words with much care. Her voice seems filled with awe. It’s unusual- for her to dream about the stage and not me. I can see this winding dance in my mind’s eye- like I know exactly what it would have looked like. Pale bodies against a red velvet curtain, a lonely stage. Like a Japanese Butoh performance, twisting and colliding in anguish and desperation- movements thwarted by pain, by some demon wracking havoc on the body. Flesh presses against flesh, as if to say its all of us suffering together. And in the end, a small woman, completely naked, the soul, dances alone- like Margaret Edson’s “Wit.” Free at last from the confines of flesh and bone, she disappears in a blinding light. 

Two days ago, I offered up my body to ALS research for the first time. Eve with blonde hair and wire rimmed glasses just like mine met Emily and I at 9:04 AM at Columbia’s neurology department. I texted her that I’d be late because I wanted a special coffee drink for my visit. They told me to bring snacks and activities for down time!

Dr. Harms seems young, but he knows a lot about C9orf72- even more than me. Finally I wont be the one explaining this disease to a professional. He listens to my racing heart, feels around my liver, asks me to follow his finger with my eyes. Then he has me walk across the room on my tiptoes, resist against his hand as he pushes into my arm. As he examines me I get the chance to ask him questions that I’ve been curating for a year and a half. 

“What is the latest on penetrance? How can I get my uncle involved in the phase 3 TPN-101 trial? Should I prepare for a short life?”

“You should keep chasing your dreams.”

Dr. Harms tells me that even if I’m positive, I will benefit from antisense targeting ASOs- small molecule drugs injected into the spinal cord that will work where sense targeting ASOs failed. This is his opinion. “I’m not telling you this to give you false hope. This is just realistic.” And then there’s CRISPR-Cas9- actual gene editing. Medical science fascinates me. Lots to be hopeful for. Lots to fight for. There’s too many people who are currently sick, or may get sick very soon. We need these drugs now.

Then my blood is drawn. It seems like a lot. The staff gives me cranberry juice while my fate is decided somewhere- my genetic results in the confidential research system.

I exhale into a little machine to test my lung function- using my vocal training to squeeze every inch of air out of me- See? I can breathe just fine. Dr. Lee comes into the room to perform an EMG- this test is the definitive diagnostic tool for ALS. He makes Emily leave. “I find that another person in the room makes the pain worse.” Hmm.

For the first part of the test, he attaches electrodes to various places on my arms and legs. He presses a probe against a different spot and sends an electric shock between the two electrodes. It feels like one of those shocking toys that would be at Aahs, a gift store in LA. Strange! Surprising. But not horrible.The next part is tricky. “I’m going to stick needles into your muscles to measure electrical activity.” Well, that’s ok, I’ve had acupuncture. He makes sure I know these needles are much thicker. They are stuck strategically- I recall a month ago in Chicago. My head on my friend Cami’s lap as she tucked my hair back to stick tiny pins into my ear. Dr. Lee wiggles the needles into my muscles- ones in my hands, arms, behind my knees. That hurts a little more. I suck in air through my teeth. This goes on and on. He tells me I have high pain tolerance as the needles leave bruises. I’m mesmerized by watching the electrical signals dance across the screen. I’ve always been fascinated by the body.

The last part of the test is a cognitive exam. Eve comes back – I bet she’s younger than me. She tells me a short story, then asks me to repeat it back to her, word for word. For someone whose job involves memorizing sides all the time, I thought I would be better at this. She asks me to name pictures, repeat a series of numbers, tell her which word doesn’t make sense in a sentence, then repeat the same story from before. Emily fills out a form telling the researchers that I’ve displayed no strange behavior- nothing new anyway.

I’m done. I get a referral from Dr. Lee to sign up for his Metabolic study on people at risk for ALS. I have a call planned to set up my ALLFTD appointment in several days. I’m in it now- no going back. Guinea pig for life… but guinea pigs are cute, so it’s ok. My friend Sydney is in town, and I run home to change so I can meet her at Sunset Boulevard in an hour. I’m running late and stressed about it. Later when I’m tearing up during the overture, I’m reminded how sweet it is to be stressed over something as simple as being late to a Broadway play. Not about my likelihood of ALS or FTD. I feel kind of aglow inside- I hope my data will help save lives.

“They’ve been saying there will be a cure for ALS in ten years for decades.”

I choose to believe there’s a reason to keep fighting. 

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.