“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. I take a deep breath, holding on to my dream so I might eventually be able to go back to sleep, and try to pull Right Leg up. It’s challenging, and I consider waking Rob, but I already did that once because I was freezing and needed help pulling up the covers.

I slowly, slowly manage to wiggle my leg free, using my hips and the strength I still have left in my arms. The whole thing is like some twisted dance routine that probably wakes him up anyway. Then I maneuver both hands onto the bed rail and turn my body onto its side. I try to find the dream again, the one where I am performing, high above the crowd….

Instead I’m in my Grandma’s house and she is digging through my purse. Stop doing that! I order, but she pulls out a bottle of pills and drops it. Little, white ovals of Riluzole hit the floor, scattering like smooth stones. Frantic, I fall to the floor with them, rummaging under the couch, collecting all the pills. Protecting all the pills.

It goes on like this, an anomaly of a night. I keep waking up, dry-mouthed and trapped, the sky getting a little lighter each time, until I hear footsteps running down the hall, and a little body launches herself into bed with us. “It’s too early,” Rob tells her, and she’s gone, carried down the hall and back to her room, where she is supposed to wait for the light on her alarm clock to turn green at 6:30. It’s not 6:30 yet? My phone is too far away to reach.

Then the dreams are done, and when morning comes, it seems like weeks have passed. I am overheated and stuck beneath a duvet that might as well be a sheet of cement. I try to free my legs, but they’re still asleep, too tired to make the effort. I lie there and, again, I try to summon my dreams, the ones where my body moves the way I need it to, even as I know this is impossible.

Share this post on your social platform