Bright Green Box

After my swallow study, the doctor tells me that his job is to see to it that I die of old age, and we both laugh, knowing I won’t make it to forty-eight. He hands me a clear plastic tube, three inches long with a blue bubble attached to one end, and shows me how to put it where my tongue makes the k in cookie. He tells me I should use my tongue to press the tube against my palate for three seconds, then rest before doing it again. If I repeat this five or ten times every other day, it might slow my tongue from turning into stone.  

Then he asks me if I received the EMST, and I vaguely remember yet another masked woman at the ALS clinic handing me a bright green box, showing me how to use the respiratory strengthening device inside, how to force the air out of my lungs. Three days a week I should blow five times, rest one minute, and repeat that three times. I diligently packed the damn green box in my suitcase to use when I travel, and it has followed me, unopened. This morning it sits on my dining room table, reminding me that I am dying and that I am not doing my best to keep living. 

I push the box aside, noticing how my fingers curl in like a bunch of bananas, and now I feel guilty for not stretching them as the occupational therapist instructed. But with the table cleared, I do a stretch the physical therapist showed me—five reps of twenty-second holds, seven days a week—so I don’t get a frozen shoulder: frozen, immobilized before its time, the time it takes for ALS to paralyze enough voluntary muscles for me to die, before my time, for a lack of trying.

Hanna du Plessis used to facilitate social change and taught Design for Social Innovation at Carnegie Mellon University and the School of Visual Arts. Now she writes while dying of ALS. Her work has appeared in the Pittsburgh Post-Gazette, Song of Ourself: Voices in Unison, and the Carlow University MFA in Creative Writing Program’s 20th Anniversary Anthology. You can follow Hanna’s journey with ALS and see more of her writing at okaythen.net/hanna. 

This essay is a Short Reads original.