Both Things Are True

My mom died a year ago last sunday. The days around it I felt like anything could topple me. By myself, I cried. I said out loud “I want my mom.” It’s not fair. I work hard to not be resentful. At people with moms. At the medical system who failed her. At my aunt. At her. If I think about it, my chest hurts. So I don’t.

To live is to expand our tolerance to distress.

I love skincare. I have a robust skincare routine, and I notice doing this assumes I’ll live long enough so that I’ll have wrinkles to try to prevent.

I wrap my world into a single sentence that I say at my meetings- I’m the busiest I’ve ever been! I like being busy. I like working and “climbing the Alpine Path.” I feel excited about every small step up. Working an hour after I wake up until an hour before I fall asleep. I do feel excited, and engaged, until- I’m falling asleep on the train, or sweating through my sheets- a light flickering on in my closet- my mom? I panic- I have to do it all now. All I have is now. I am at a very high risk for developing ALS or FTD. I can’t wait for my dreams come true. I need a strategy- a five year plan.

I run Yentli’s Search for a Self Cure tiktok now- her video explaining her risk has over a million views. I also run some social media for End The Legacy. Two weeks ago I was in Seattle at the AFTD Education Conference snapping photos, filming, asking questions- I have rarely felt as strong as I do now. Not strong just because I survived what I did- it was that or die. Strong because of how I use my pain. 

In the last two weeks I’ve also had more audition requests and callbacks than all of the first half of the year. Maybe something will work out. It’s very strange to engage in discourse about policy that will save people’s lives and then 

film myself waist up against a blue backdrop and a tripod that keeps falling over

I’m 5’3.5”, non-union, based in NYC and LA and this is Cecily from the Importance of Being Ernest.

I do it, because maybe somewhere is this chaos and an industry built on racism, sexism, beauty standards, I will get lucky, I will find a four leaf clover, I will achieve some moderate commercial success and I will get to say

I am an artist. And I am an advocate for rare diseases.    

I don’t have time to waste waiting for someone to choose me. I will choose me. I will make something myself.

On June 9th I’m producing a Fundraiser event in honor of my Mom. It will be a cabaret featuring some of her favorite musicals- Oklahoma, carousel, Cabaret, South Pacific- music she played for me growing up, shows that made me want to do this with my life. It will benefit Target ALS. I like that they are transparent about their C9 initiatives. It’s good to be taken seriously- C9 is by far the most common genetic cause of both diseases It needs to be worked on. 

“And then, for one glorious, supreme moment, came “the flash.”It had always seemed to Emily, ever since she could remember, that she was very, very near to a world of wonderful beauty. Between it and herself hung only a thin curtain; she could never draw the curtain aside—but sometimes, just for a moment, a wind fluttered it and then it was as if she caught a glimpse of the enchanting realm beyond—only a glimpse—and heard a note of unearthly music.”

I am so grateful for my life. I am so lucky that I get to experience “the flash,” that I’ve inherited this gift of hunger to create- a gift from both my parents. Sometimes when I’m falling asleep I can wade through my memories like water- places from my childhood that I can never return to, places I know well that I can only visit in my dreams- orange VHS tapes, movies in the library on rainy days, swimming with my cousins, night drives home from Seders, my mom reading to me. It’s easy for me to share this gift when I’m inspired by it all- what’s been beautiful, what’s been hard. I love life. I want to live. I must keep working. 

“Emily had inherited certain things from her fine old ancestors—the power to fight—to suffer—to pity—to love very deeply—to rejoice—to endure. These things were all in her and looked out at you through her purplish-grey eyes. Her heritage of endurance came to her aid now.”