Both Things Are True

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.