“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” — Susan Sontag, “Illness as Metaphor,” New York Review of Books, Jan. 26, 1978.
In the last few weeks of 2021, my body put a stop to overtasking and sent me to the corner to think about what I’d done. I had elective surgery to revise a scoliosis surgery from 1983 that I had postponed for 15 years for fear of slowing down. The recovery time prescribed was six weeks at home, and six months “no B.L.T.s” (a delicious abbreviation for bending, lifting, and twisting).
Now in week four of recovery, I spend my days anticipating visits from masked friends (who should also wear capes) bearing food and helpful hands. When friends aren’t nearby, I ask my permanently disabled husband, Carlos, to help me reach things in the cupboard, get dressed, and do more humbling activities.
Years ago, Carlos (who has used a wheelchair since a car accident on his 23rd birthday in 1987) co-curated an evening of short documentaries on artists and musicians with disabilities for my former venue, Aurora Picture Show, in Houston. The program was titled “Rock Star Parking” (a euphemism for handicapped parking spots), and the centerpiece was the Academy Award-winning 1996 movie “Breathing Lessons: The Life and Work of Mark O’Brien” by Jessica Yu. O’Brien, a poet and journalist who spent the majority of his life in an iron lung after having polio at age 6, made a statement that still replays in my head: “I want people to think of disability as a social problem. . . . Everyone becomes disabled unless they die first.”
Carlos and I recently mentally compiled a list of disabled creative people — there are a lot, especially if you include neurodiversity. Octavia E. Butler, Ray Charles, Chuck Close, Frida Kahlo, Stevie Wonder, to name a few. There is a 1949 photo, circulating in social media right now, of Matisse, ailing from intestinal cancer, in his bed using a broomstick with a brush to paint plans for the Chapel of the Rosary in Vence, France. It’s said his famous collage technique was born out of his physical limitations.
A fellow colleague in the art world noted that we are in a shmita or sabbatical year, according to the Torah (starting from Rosh Hashana 2021 to 2022). Shmita is a year of “release” (the seventh year in which farmers should not plant the fields to allow for rejuvenation of the soil). I’ve also heard friends say that in 2022 they’re getting off the treadmill of life, resting, and recovering from the trauma of the last few years. Rushing ahead is pointless if you don’t know where you’re going.
What I have learned from this short stay in the kingdom of the sick is the ability to be stationary, observe the world from a place of quietness, listen attentively to my masked and caped friends, ask for help, and to be more connected with my surroundings. (For those who face limitations daily and permanently, I admire you and do not take lightly your challenges.)
I’ve often called Carlos “my holy man,” in part because his last name is Lama, but more so because he has taught me there is much to be learned from breaking free from the relentless pursuit of doing too much.
Andrea Grover is the executive director of Guild Hall and a curator, artist, and writer.