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>

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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>

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Music Together

I remember obsessing over live music. My friends and I would go to outdoor concerts and festivals, clubs and music halls, following bands, camping out, getting sunburned. I remember how it smelled, like trampled on grass and smoke and sweat. Like blankets and fried food, and something sweet I can’t identify, but that might just have been fresh air. When a favorite song was played, we jumped up and down, singing along and hanging on to each other, utterly gleeful. Once a friend of a friend came to a show, and, watching us as if we were anthropological mysteries, said, “I don’t think I like music as much as you guys do.”

Seeing live music is still one of my favorite things to do, and, even though it’s quite a different experience these days, Rob and I spent our weekend going to shows. On Friday night, we met a group of our friends at Sheba’s Ethiopian Piano Bar, where they had secured a cozy corner spot and ordered a few bottles of wine and some sweet potato fries, which doesn’t seem very Ethiopian, now that I think about it.

These are friends I don’t get to see very often, and they erupted in screams when we rolled through the door. I have no doubt they had erupted in screams each time one of them arrived prior to that, too. There were ten of us: One had flown in from the actual state of New Jersey, 4 others are NJ transplants, and the rest of us don’t matter because our roots are buried beneath all that Jerseyness. I say this with love. Read More>

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