Ludicrous
by Cristina Olivetti
Pawel Czerwinski, acrylic painting, 2023. Courtesy of Unsplash.
Ludicrous
Cristina Olivetti | AUG 2023 | Issue 26
A healthy motor neuron can generate electrical signals that travel through your body at up to 275 miles per hour. These cells have extreme geometries. Multiple dendrites flutter around the cell body, and a single axon per cell threads across distances as far as a meter to connect neuron to neuron.
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The Tesla S-80 with its burly torque arrived at our house in the middle of the pandemic. Ludicrous Mode was a new feature that season and it fit our mood. Tragedy is sad of course, but it's also hilarious. This is something they don’t tell you. When the car arrived, we got in it and my husband pressed Ludicrous on the flat screen. We drove out our driveway. Left onto Laurel, right onto Oak Grove.We stopped at the light where we always do.
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To be diagnosed with ALS, a patient must show symptoms of both upper and lower motor neuron decline. To lay people, this business of upper and lower motor neuron involvement is confusing. It is not like above the waist is controlled by the upper motor neurons and below the waist is controlled by the lower ones. That said, the lower motor neurons do control most of the body’s extremities, like hands and feet. This accounts for the fact that the first symptom many people notice is weakness in a hand or foot. A doorknob might be weirdly hard to turn. Out of nowhere a person might start tripping over their own feet. The first time my husband asked me to open a jar of pickles for him, something loose rattled at the back of my rib cage, like a penny knocking against the side of a hollow can. My best friend’s mother had died of ALS.
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More like a rocket than a car, the S80 dual motor all-wheel-drive chassis blasted all 503 horsepower with its 487 pounds per feet of torque across the intersection. We hurled past the local highschool weightless. Speed stretched us into long thin ghosts of ourselves. Laughter came out of our bellies and throats and from between our legs. Our skin seemed flimsy and see through. We were disintegrating. It was ridiculous and fun. And terrifying. All those synapses firing.
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There is no test that can reveal for sure that a person has ALS. Doctors call it a diagnosis of exclusion. Your hands or feet or mouth just start to behave in a queer way and eventually, without evidence of any other verifiable problem, some other body part starts to behave queerly too, and then you get diagnosed—it's that second thing, the spreading lethargy that confirms it. Meanwhile clumps of proteins have been jamming up your neurons and killing them for who knows how long.
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There are so many lasts we don’t remember. I don’t remember the last time Graham drove the S-80. Early ALS has an inbetweenness that’s a little like autumn. Leaves turn color and then fall, but who remembers the first leaf or the seventh, or the hundredth. To count them would be to miss the spectacle of the change. The waves of yellow and orange, the piles of leaves crunching underfoot. I do know I kept the car for a while after Graham could no longer drive it. You can ask my friends—I drove Ludicrous for all of them. But it wasn’t that fun. People felt nauseous and knocked around. I get it. They weren’t falling apart like we were, so that thin disintegrating feeling wasn’t exactly hilarious for them.
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Electrodiagnostic testing alone cannot confirm ALS, but it’s an important part of the diagnosis. A doctor shoots a current through a needle into the patient’s muscles to measure how efficiently nerve signals, which are basically electric current, can travel. A printer draws a wave on a ticker tape that represents the signal, and if the patient has ALS the pattern indicates worsening distal motor latency and slowing of conduction velocity consistent with axon loss and loss of the fastest conducting motor neurons.
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Now he needs me to clip his fingernails. Trimmings fall onto the kitchen floor like a collection of waning moons.
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Amyolateral Sclerosis is fatal. Most patients live three to five years after diagnosis.
Some shorter, some longer.
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At bedtime after I’ve taken off his pants, helped him into the bathroom, turned on his electric toothbrush, moved him across the room, handed him his pills, taken off his watch and then his glasses, I peel off his t-shirt. I ball it up like a basketball and alley oop it across the room. I’m trying to hit the pair of pants I've left folded on the chair.
As the t-shirt sails across the room we don’t think of what he can no longer do—lift our smallest child onto his shoulders, bench press his weight, haul his scuba gear on his own back, rearrange the cables of the computer hardware in his office. Or about what he is about to lose. Putting his hand on the small of my back the way he did on our first date, petting our cats, beating friends at video games, mixing me a cocktail, or doing that thing that only he has ever done to me with his thumb and forefinger, pinching me into ecstasy.
Two weeks ago, I had a five-night alley-oop streak going, then on night six, I lost it. I hit the mark again the night before last. “You’re back,” Graham cheered from the bed. I pumped my arms above my head. Laughter shook us into thin pieces. We have become ridiculous. Our story is sad, of course. But you know that story already. The thing they don’t tell you is how a body comes alive with terror, what it feels like with all those synapses firing.
Cristina Olivetti is a writer, translator and educator. Her memoir, About Bliss: Fighting for My Trans Son’s Life, Joy and Fertility is forthcoming from Jessica Kingsley Publishers in October 2024. The piece, “Ludicrous” is part of her memoir in progress which is a meditation on marriage and mortality. She lives in Northern California with her partner, her kids and their four cats. Competent, compassionate at-home care for her husband makes her writing life possible.