I am Mindy

a family member in a familial ALS family,
a family member of someone we've lost to ALS,
an ALS gene carrier,
personally connected to another rare or neurodegenerative disease,
someone who cared for a person we've lost to ALS


It’s important for me to make memories with Nanee. There’s so little time left.

This feels so familiar. I take my mother’s hands in mine, try to uncurl them under the faucet. Her left hand is clawed, now permanently stuck, rigored. I don’t exactly know how to wash an adult’s hands, but it’s kind of like washing my kids’ hands, when they were toddlers. But not quite. She has a large, sapphire ring on her left ring finger. Her nails are at least an inch long, and then, there’s the claw. That’s different.

“Wait a sec, Nan,” I say. I run my own hands under the faucet and soap them up. I use way more suds than I need to. I reach for her left hand and massage the soap between her fingers. I use my thumbnail to pick the matzoh meal from under her fingernails. I rinse, and take her other hand in mine. It occurs to me that were I not here, she’d have to deal with the matzoh balls herself, cracking eggs, pouring oil, opening the box of matzoh meal, rolling it into ping pong balls, one-handed. I look away from her hands to her face. She smiles ruefully at me and shrugs, like she knows. There are so many firsts this trip. The first time I’m taller than her because she can’t stand anymore. The first time she talked about what she wants to be buried in. The first time I washed her hands.

I grab the goose-neck faucet and rinse her hands. She doesn’t thank me; she’s on a mission. She’s not going to cry.

“Okay. Time to check the broth. Is it boiling yet?” she slurs. She halfway dries her hands on the paper towel I hand down to her. Nanee puts the wheelchair into reverse, and aims for the stove, which she cannot reach. On her way, she rolls over a little blob of dough she’s dropped.

The electric wheelchair flattens it, leaving a slug-shaped smear on the floor. I bend over and wipe it up with the paper towel she’s also dropped. Everything is a colossal effort for her now. A simple act, like washing hands, using the bathroom, or picking up something off the floor, is nearly impossible.

Before she can reach for the pot on the stove, I say, “I’ve got it.”

The soup’s not boing yet anyway. As I stare into the pot of chicken broth, it strikes me that this is maybe the last meal she’ll make with me. It’s important for me to make memories with Nanee. There’s so little time left.

“Not yet,” I tell her, but I don’t know if I’m taking about the soup or something more dire.

“Okay, then let’s clean this up,” she mumbles. She points with her good hand at the empty boxes, the egg shells, and the oil bottle. She watches me throw the boxes into the recycling, grab the egg shells and throw them in the trash. As I reach for the oil, my stepdad, Jimmy, bursts through the front door.

“Hey, girls! It smells great in here! Is it cocktail time yet? Mindy, you want something?”

Nanee says something I can’t quite make out. She must be ready for a rest in front of CNN. I check the soup again, which is boiling vigorously. I turn down the heat and reach for the matzoh balls.

“I’m good,” I tell Jimmy, who pours Nanee a plastic cup of ice water. He kisses me on the head on his way to her. Carefully, I lower each dough ball into the roiling pot of broth.

“Excuse me,” Nanee says, motoring off in the direction of the master bathroom. Jim follows her in, calling over his shoulder, “Duty calls.”

As the pot fills with matzoh balls, I realize that the intimacy we share only goes so far. She won’t let me take her to the bathroom, shower with her, or tuck her in bed at night. She won’t let me put her bra on or help her with her makeup.

Sharing the moment, washing her hands, rolling matzoh balls, was enough for her. I rinse the sticky plate where the matzoh balls left their round footprints and put it in the dishwasher.

I let myself out into the hallway, take the elevator down to the street. My shirt smells strongly of chicken broth, so I walk into the humid Florida air and head across the street to our vacation rental to change for dinner.

There’s a mother duck in the storm gutter on the side of the road. She and her eleven ducklings seem unperturbed when I walk by them. Dragonflies are everywhere in the autumn afternoon along the Gulf Coast. They whiz by me, so close that I can hear the hum of their wings. I wonder if I’ll be in a wheelchair one day and if someone will take care of me when I can’t take care of myself. For now, I’m grateful to walk on the sprinkler-soaked pavement, to unlock and open the rusty gate, and to climb the stairs to our rental condo.

As I enter the small unit, Kirk and the boys each greet me with a hug. My kids, at 16 and 13, are both taller than I am, but I can stand and hug them and bury my face in their shoulders and cry the tears of gratitude, of sadness, of love that only I can cry.

Bio Statement: Mindy Uhrlaub is a San Francisco Bay Area author who is writing an ALS memoir.

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