Both Things Are True

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.