Lucia Perillo was not quiet about the toll that multiple sclerosis took on her. In 1988, the year she was diagnosed, at the age of 30, she was leading visitors on nature walks up Mount Rainier between the creative-writing courses she taught at Saint Martin’s University. In the years that followed, she chronicled her growing discomfort, her fear, and the regular humiliations that came with losing control of her body.
Perillo’s anguish is palpable in “Pharaoh,” published in The Atlantic in 2010. Sitting in the waiting room of a pain clinic, she watches the yellow tang in the aquarium look on with indifference. The fish is a “small god,” she writes, offered by the “big gods”: the doctors, the nurses, and the medical establishment. The patients are small and vulnerable, trapped in the waiting room and also in their own bodies. But the fish, despite being stuck in its tank, doesn’t have the same awareness of its own limitations; it just watches with a blank stare, like the “death mask of a pharaoh,” as the patients shuffle helplessly by.
Perillo wrote about those limitations with humor, but also with brutal honesty. In 2014, asked how she managed not to fall into despair, Perillo said: “I’ve already fallen. This is the voice from the swamp.” She died two years later, at the age of 58.