Tag Archives: Sorry Brian

Living with ALS, Laughing Anyway

Today I read a short piece of fiction by Langston Hughes, and so of course now I feel like I can’t write anything.

“…the laughter bounced, like very hard rubber balls, around the room, not like tennis balls, but like solid hard rubber balls, and Marcel laughed, too.”

That’s so good. The sentence is almost tactile, I feel that I could be hit by that rough laughter, or that maybe I could catch it in my hands, turning it over and over and studying it.

I’m here today, but I’m under several layers of fog. I haven’t been sleeping well, and last night, I found myself shivering so hard I thought that I would seize up. My teeth were chattering as if I was in a cartoon. Rob covered me with another blanket, but I kept waking up, feeling hot and trapped. This morning, I was so tired, and my weakness was so pronounced, that I thought well, we can’t ever let that happen again. As if I even know what the problem was.

And so today, everything feels difficult. My tongue is slow in my mouth and breathing is like ducking my face into swamp water. When I laugh, it does not bounce like hard rubber balls. It sounds like silence, and lands like cotton balls. But I did laugh, earlier, when I was on the phone with my sister. I could feel the laughter in my neck and my chest, trying to get out normally, not quite succeeding. Read More>