Monthly Archives: April 2015

Dispatches from Tahoe

Sunday afternoon, Easter: Our mobility-converted Honda Odyssey is climbing into the Tahoe area, and we can see snow flying off of the windshields of cars coming down the mountain on the other side of the road. We keep climbing and suddenly we are in the snow, light flakes falling, but enough to inspire Scarlett to launch into Let It Go. It really doesn’t take much to get her to sing that song. “Snow glows white on the mountain tonight!” she crows, and when she has finished the song, she starts it again. And again. Also again. I blame jelly beans.

Monday: We’ve come to the snow for our spring break, although I’ve discovered via Facebook that everyone else we know seems to be in Hawaii this week. After a tough season in Tahoe with barely any snow, there are now “two feet of fresh powder at the summit.” Those words are in quotes because I heard someone else say them. I don’t talk like that. I was always a reluctant skier; once I got going, it was fun, but I never loved it. You can read about my last ski experience here. It will clue you into why skiing is not something I miss very much. But having written that, I feel it necessary to add that there were times, skiing down a simple blue run, when I felt so graceful and so peaceful that I could see why people obsess over the sport. That doesn’t change the fact that chair lifts are scary.

In the afternoon, we teach Scarlett how to play Old Maid. She wins two games, and Rob has a talk with her about sportsmanship. Read More>

Jodi

I’ve lost another friend to ALS. Jodi Oliver was diagnosed in May 2013, at 44 years old. She died last week, on April 2, 2015. It was just two weeks after our friend Trickett Wendler died, and so it has been a particularly rough time in my ALS life.

Jodi was another mom from my Facebook group. You’d think there were a lot of us, based on the writing I’ve done about the group, but there were only five original members. Now there are two left. Two. I’ve equated it to a squadron of soldiers, but really it’s not. We didn’t enlist, and no one ever tells us that there’s a chance we will get out alive, go home, start over.

But if we were a Band of Sisters, then Jodi was our Sunshine Girl. She lived in Orange County, California, had a golden smile to match her hair, and loved sunflowers. After her diagnosis, she befriended a producer for the movie You’re Not You, about a young woman with ALS, played by Hilary Swank. When the producer, Alison Greenspan, invited her to a premier, Jodi was so excited. “I will probably have security surrounding me cause I tweet constantly,” she told our group. Read More>

In Dreams

“At the border of the forest—dream flowers tinkle, flash, and flare,—the girl with orange lips, knees crossed in the clear flood that gushes from the fields, nakedness shaded, traversed, dressed by rainbow, flora, sea.” —Arthur Rimbaud, Childhood, from Illuminations

“Nothing is as boring as other people’s dreams.” —John Green, Paper Towns

“Sorry.” —Sarah, today.

In my dreams, I can walk. I know I have ALS, but when I’m asleep it’s just a vague idea that doesn’t affect my abilities at all. I make my way through unfamiliar rooms, carefully, knowing I could fall, knowing I can’t actually do this thing that I am somehow doing. It feels like something other than my body is holding me up.

Then I am running, from one place to another; so many things need to be handled, and all at once. I see all the people I’ve ever known, and they are confused. “I thought you were sick,” I hear them call as I rush off.

There is a stage floating at the top of a giant stadium. The show is performed inside a net, and I am playing several different roles. I haven’t practiced my lines, I’ll have to read them from a script. There are so many costume changes, but no time to manage them between scenes. The show is starting and I’m not in the right place…

Stress dreams. But not as stressful as waking up with my legs tangled around each other, Left weighing down Right, and my neck uncomfortable from where it’s wedged against my pillow. Read More>