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.

The Langston Hughes story, though it’s not comedic, reminds me of an inside joke about a dog bakery. I can’t share it here, because there’s no point, you won’t think it’s funny. But sometimes when I’m getting my hair dried, I laugh to myself about that joke. Sometimes I laugh about it when I’m lying in bed. The point is, I still find many things funny, even if I can’t laugh loudly at them. Just as I find many things sad, but my muscles won’t let me cry as hard as I want to.

The core of the problem, so to speak, is my stomach and my diaphragm. Both have seen better days. It’s amazing the things you have trouble with when your stomach muscles aren’t strong. When I was a sophomore in college, I used to borrow a VCR from the boys in the apartment below, so that I could do a 10-minute Abs of Steel tape in my living room. It was fun, although I have a sweet tooth and my abs were really more like chocolate pudding than steel. Ultimately, the neighbor boys shut down the operation, complaining that I never reattached the VCR wires upon returning the machine.

I still did my sit-up regimen, and went running on the lake. In my senior year, my roommate Sara and I got very into kickboxing. We went to a basement dojo on State Street in Madison, Wisconsin, where we would loop black handwraps around our fingers and hands, and kick the crap out of training dummies. By that time, I was bartending, and I had abs of tequila, but I was also strong.

And now. I look down at my stomach, and observe that it’s flat, in a way I’m sure I would have loved at one point in my life. But it’s weak. It won’t let me laugh the way I want to: like a hard rubber ball, like a crushing forward kick, or even like the small 3-count swish of liquor being poured into a glass. It’s quiet now, a quiet laugh, but a laugh it is—still—and I wonder what Langston Hughes would have called it.

“Marcel’s laughter was like a painter’s ground cloth that protects the furniture and anything else under a ceiling being painted. Marcel’s laughter somehow cleared the air of evil and left only the seven people dancing, including himself.”

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7 thoughts on “Living with ALS, Laughing Anyway

  1. Kay

    I got these teeth chattering, body seizing episode it’s pretty frequently in the winter. It’s even worse when there is some emotional factor . Extra blankets did not help me as the coldness felt deep inside. What worked was putting on heating pads my feet hands and stomach. I woke up feeling totally exhausted after these episodes

    Thanks for the tip about Langston Hughes going to look that up today.

  2. Nana

    Funny you should be wanting a firmer laugh. Phyllis, my hairdresser, used to tell me jokes to hear my “HORSE” laugh. Be careful what you wish for—–! With your weakened muscles it may sound more like a “neigh”. Love you and think about you constantly. N

  3. Rami Randhawa

    Sarah, you may envy Langston Hughes for his virtuosity but you are an amazing writer.Many of your poignant, funny, insightful and honest sentences stay with me for days. Hope you will have a better night today.

  4. Candy Bogardy

    My husband gets those ALS chills, and after a fourth night in a row of his cold snuggling, I went out and bought a down comforter. Now we live in the south…we wouldn’t normally need one. He loves it. It’s light enough to drag atound the house, or move to the side if he gets warm. And I just use it as another pillow. Tell Rob to go shopping, honey.

  5. Deidre Reed

    Langston Hughes could string the words together, sure, but maybe he wasn’t so good at laughing at himself. Or Otto.

  6. Ralph

    Hi Sarah
    Thank you for sharing. i find my self shivering like you when i am exhausted. If you are on Bipap try a few more hours a day until your sleeping pattern improves. Ask Rob to rub your legs and arms before you sleep. Maybe that will help.
    Love your writing. Keep strong and keep laughing.

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