There’s a nursery rhyme adapted from a Shel Silverstein poem that Sandy Morris used to sing at Girl Scout camp in California. It’s about being eaten by a boa constrictor, beginning with the toes, and Morris can still recite the lyrics by heart: “Oh, fiddle, it’s up to my middle / Oh, heck, it’s up to my neck / Oh, dread, it’s upmmmmmmmmmmffffffffff …”

This feeling of getting swallowed, in slow motion, is what Morris says it’s like to have amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease. Since doctors diagnosed her with the incurable neurodegenerative condition on Jan. 6, 2018—but really before that, since she’s the type to have already done the research to diagnose herself—Morris has gone to sleep each night knowing she’ll awake with less physical function and independence than the day before.