In 2013, at the age of 41, I decided to make a career change and become a nurse practitioner. At the time, an advanced case of reactive arthritis often left me unable to walk. The entire time that I was taking prerequisite classes, I was in a mobility scooter, a 35-pound dragonfly of a three-wheeler made by a company called TravelScoot. I also needed a large surgical boot on my foot to help me walk.
I rode that mobility scooter in the sun and through the snow, on the bike path by the Hudson River, from my home in the West Village to the Borough of Manhattan Community College downtown. I rode it through the intestinal maze of the New York City subway system, through tunnels that trapped the heat and cold of the previous day’s weather, up and down elevators that trapped the odor of urine, to New York City College of Technology in Brooklyn. I rode it and rode it and rode it, and wondered if I’d ever walk again.
This isn’t the real me, I wanted to tell the world. This time doesn’t count. When I walk again, that’s when I’ll be real.
Amid the misery, I let myself hope. A physician assistant at my primary-care doctor’s office told me about one of her fellow students, a man with cerebral palsy, who had completed the program and graduated while using a wheelchair. In 2016, I was accepted into a community college nursing program, but then told to come back when I didn’t need a boot, which might mean never.
I continued to ride my scooter and to believe that some school, somewhere, would make a place for me. I didn’t see my future self briskly striding through hospital corridors. I just needed to get through school so that one day I could sit behind a desk at a health center or work in an outpatient clinic. There was plenty of nursing work that could be done just as well in a surgical boot as in a shoe. I could write a prescription, give a vaccine, insert an IUD. I could look a patient in the eye and listen.
In July 2017, I was out of the boot and walking again for the first time in years. My spouse and I were thinking about moving to Australia, so I applied to programs there and was admitted to nursing school at the University of Melbourne. After completing my first semester, I decamped to Sydney for a month. There, I lived in an apartment overlooking Bondi Beach, perhaps the most beloved urban surfing destination in the world.
Day after day, I watched the surfers. I daydreamed about taking a surfing lesson, but my hold on walking felt so recent and unlikely, I didn’t chance it. And in other ways, it already felt like I was surfing. I was surfing on the arthritis medication I had starting taking in spring 2016. I was surfing on the steroid shot I’d gotten in April of 2017. I was surfing on the immuno-modulating probiotics with which I was experimenting. Just as if I were a surfer, any little thing could knock me off my board and back into arthritic misery, back into the boot and scooter I had come to know and loathe.
Watching the surfers, I noticed that the time they spent standing on their boards, riding waves — doing what nonsurfers would call surfing — was minimal compared with the time they spent bobbing around in the water next to the board, generally going nowhere. Even the really good surfers spend far more time off the board than on it.
If you added up the seconds that a good surfer actually spent riding the waves, it would amount to only the smallest fraction of an entire life. Yet surfers are surfers all the time. They are surfers while they are working their crap jobs, daydreaming about surfing. They are surfers when they wake up at 4 in the morning. They are surfers when they walk the board down the hill to Bondi Beach. They are surfers when they drink their predawn espressos. They are surfers when they paddle out on their boards. They are surfers when they wait and wait for the right wave. They are surfers when they wipe out, thrashing around blindly in the waves, praying the board doesn’t crack their skulls. They are surfers when they sit by their trucks with their friends after surfing, silently eating their grain-bowl meals.
And the thing about surfers? They don’t seem to regret all that time they don’t spend standing on boards and riding waves. Not only are they surfers all the time, they are, it seems to me, happy all the time.
Could I do that? Could I be happy even when I didn’t know whether I’d be able to walk the next day, or whether I’d be alive a year from now? Could the time I might spend in the humiliating, tedious boot and scooter somehow count as mine? Instead of waiting to be well so I could be myself again, could I be me while sick, too? Could I declare myself a surfer all the time, and seize that happiness?
I thought back to my time in New York, when I was rising at dawn to take courses and intern in doctors’ offices, and struggling both to get around and to relocate the real me: I had seen a new light in the faces of my fellow students and patients, in our shared endeavor to live. The dark mystery of bodily suffering had offered itself to me as a new way to love New York City, and life, all over again. I had accepted it, with joy. Watching the surfers at Bondi Beach, I vowed to do so again when I returned home in the fall, no matter what.
Ellis Avery was the author of two novels, a memoir and a book of poetry. She taught fiction writing at Columbia University and the University of California, Berkeley. She died of cancer in February 2019.
Disability is a series of essays, art and opinion by and about people living with disabilities.
Coming soon in print: “About Us: Essays From The New York Times Disability Series,” edited by Peter Catapano and Rosemarie Garland-Thomson, published by Liveright.