Illness Took My Mother's Independence, but It Gave Us Something Precious

New York Times

21 hours ago

On a breezy evening in the year 2000, Mom walked barefoot out to the freezer in her garage, as a fourth-generation Californian is wont to do. But as she dug through the cave of icy corn dogs and Costco salmon, she was distracted by a startling sensation: Her right foot was cold atop the wind-chilled pavement, but her left foot was burning hot.
Multiple sclerosis is best described as a disease of self-sabotage. As the body eats away at its nerves' protective exterior, the nervous system loses its ability to fire, leading over time to various debilitations. For Mom, this meant losing control of the left side of her body. Over the course of five years, she went from walking with a cane to supporting herself with her service dog's harness to eventually using a walker. If you were to map the development of her disability, it might look like Rudolph Zallinger's illustration of human evolution in reverse: beginning upright on two feet but then morphing into a hunched-over figure, arms hanging like pendulums.
My mom's transformation was hard for me to accept. I was a moody teen, more concerned with my high school microdramas than with my mother's ailments. I blamed her for everything that went wrong in my life, without ever really considering how she might be privately struggling. The one tradition we did share was our trips to the mall, where we tried on clothes and ate our favorite Cobb salads. But eventually even those visits dwindled. In college, I finally realized that my mother could no longer trawl through the shoe aisle.
Years later, living in New York, I saw a retrospective at the Met of the artist Alice Neel and was moved by a nude self-portrait she painted as an older woman, in which she sits in a striped armchair. There was so much dignity and defiance in her eyes, despite the sagging skin below them. A month later, when my parents visited, I knew I had to share what I had seen with my mom. Canes and handicap placards made Mom feel, and look, older than she was, but Neel demonstrated how aging could be beautiful and enchanting. And while museum-supplied wheelchairs were a few sizes too big for my mom's tiny frame, I knew she would enjoy visiting as much as I would. Hours passed quickly as I pushed her around the exhibit, moving toward the portrait of Neel.
By this point, my mom had reluctantly accepted that riding in a wheelchair was the quickest way to navigate an airport terminal, and she had already bickered with a friend about whether she needed help getting around a London rose garden. But there is something different, for me, about pushing my mom around a museum, whispering in her ear as if she were a baby in a stroller; I'm more responsible for her now than she is for me. Looking at art from a wheelchair might have begun as a painful development for my mother, but it has since blossomed into something alive and serendipitous, one of the best remaining activities we can share together — and, somewhat surprisingly, a lesson about how to actually start seeing.
There are studies that show that people look at a piece of art in a museum for an average of just 27 seconds; students of art history may be familiar with John Berger's idea that visitors are overwhelmed by 'their own culpable inability to concentrate on more than a few of these works,' and so they can't distinguish the good from the bad. But seeing art with a disabled person requires a more thoughtful, more patient and — most important — slower approach.
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