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From my home, a block away from the beach, I can hear the waves. They call out to the residents here, as much a piece of the island as the mountains and jungle. Locals base their lives around the water, waking early to go fishing, swimming, and surfing. High tide, low tide, summer calm, winter swells. When the biggest waves come in, the air becomes thick and hazy with salt, making my eyes sting while I work in the garden.
I can hear the waves calling me, but I can’t go to them. Due to a connective tissue disorder, my ligaments and tendons aren’t strong enough to hold my joints together. All day long they slide in and out of place, partial dislocations damaging the surrounding soft tissues.
I loved the weightlessness of water, and later, when the pain began, I loved how it helped me feel like I could escape it.
My body is too fragile to walk across the shifting sand; the membrane covering my spine and brain, patched during multiple surgeries with fibrin glue by doctors at Stanford, too delicate to be tossed around in the water. I am an anomaly here, in my rural surf town. A wheelchair user in a place not built for one. My pale, untanned skin pegs me as a tourist, even though I’ve lived here for nearly 14 years.
But AccesSurf, a local organization that works with disabled people, says they can get anyone in the water. AccesSurf is part of an informal international network of similar organizations that support ocean sport programs for people with disabilities. In 2015, the International Surfing Association held its first adaptive surfing competition, with 69 athletes from nineteen countries participating. Since then, interest in surfing and adaptive water sports has exploded, and para-surfing organizations have sprung up around the US, Europe, Brazil, South Africa, and beyond.
AccesSurf usually holds daylong events at a beach on the other side of the island from me. During the pandemic, they began pairing people with “access buddies,” trained volunteers who work with people who can’t access the ocean on their own. I began to imagine myself out on the water again.
I was a water baby. Growing up in San Antonio, Texas, I spent summers in the rivers, the waterpark, a friend’s pool, my fingers permanently pruney. I loved the weightlessness of it, and later, when the pain began, I loved how water helped me feel like I could escape it. On trips to the coastal town of Galveston, I would swim so far out into the water that my family could barely see a speck. I was never afraid of drowning. Ever since I can remember, I’ve had a comforting recurring dream that I could breathe underwater. Now it feels like a taunt.
The water scares me now. Or, to put it more accurately, my body scares me when it’s in the water. My doctors have warned me about the ways shifting sand can cause joint dislocations and that an errant wave could cause permanent damage to my spine and pelvis. But I am not a person who gives in to her fears. Instead, I try to learn about what scares me. The more I learn, the more I do, the more the fear dissipates.
When I called AccesSurf, I found myself talking to Ann Yoshida, a Paralympian who competed in paddling at the 2016 Rio de Janeiro games and now works as AccesSurf’s training and innovation director. We spoke a few times about my health issues, I filled out some forms, and then we met over Zoom for a physical evaluation. I showed Ann how I can and cannot move, and explained how important it is to cushion my joints and spine to protect them from bumps and stress. Ann then introduced me to Kari Moss, a volunteer and paddler, over text. Kari would accompany me into the water at Haleiwa Beach Park, around the corner from my house.
I didn’t sleep much the night before. I couldn’t decide if I was nervous or excited or both. One of the few things I really hate about my disabilities is losing my ability to swim and walk long distances. Most of the time, unless I’m using my wheelchair or driving—and I haven’t had many chances to do either during this pandemic year—I’m pretty stationary. I often feel like the world happens around me, and that I’m not a part of it. I used to walk for hours and hours wherever I went, in New York City, Rome, and Vienna. It was one of my favorite things in the world. That world is no longer accessible to me, and I feel the emotional pain of it almost daily. I watch the tourists walk barefoot across the street with their surfboards and I envy them. I mute group texts from friends planning beach outings, and I envy them too.
The next morning I dug my bathing suit out of the back of my closet, sprayed myself with sunscreen, and headed out.
We had a small conference about logistics before entering the water. Kari would use a beach wheelchair to bring Ann to the water, where Ann would transfer onto a sit-down surfboard called a waveski. Next, Kari would help me on to a second waveski, where she would sit behind me, steering the craft with pedals while we both paddled. We practiced on land first: Kari handed me a long, lightweight paddle and showed me where to hold it. Ann helped me work out a modified paddle technique that involved much less stress on my shoulder, elbow, and wrist joints. After a few minutes of practice, I was good to go.
Kari helped me into a life jacket and a helmet she deemed “optional” (I waffled but finally accepted the helmet, the face of the doctor who patched up my spine flashing before my eyes). I felt a bit self-conscious in the wheelchair as Kari pulled me down the sand toward the water, but it was outweighed by excitement and a bit of trepidation. We had discussed what would happen when I flipped and landed in the water. “It’s not if you flip,” Ann said. “It’s when you flip.” There were two choices. One was to hold onto the board and wriggle myself back up, twisting my body around to get seated again. This was a no-go. I needed to avoid twisting my spine. The other option was to just hold onto the board and let Kari and Ann move it toward the shallows. I inwardly bristled at this, just as I had at the beach wheelchair. I still crave independence.
Kari pushed the wheelchair into the shallow water where the waveski was waiting. The cold was a shock. I flashed back to my time on the swim team in high school, the 6am dives into the frigid pool. I loved how it woke me up, how strong I felt swimming lap after lap. I sat down in the hard plastic seat, leaned against the backrest, bent my knees, and placed my feet in the wells in front of me. My lower back muscles contracted as I tried to find a comfortable position. Ann handed me pieces of firm foam, which I used to position myself more comfortably. My body didn’t exactly relax into it, but I felt secure enough. Kari handed me my paddle and climbed in behind me.
Paddling this way seemed to come naturally to me, as had learning adaptive hand controls for driving. We set off across the bay toward a surf spot in the distance. There wasn’t a big swell, but there were tiny waves that Ann thought might be fun to try and ride. Kari and I found a rhythm, and I was surprised at how fast we could move. Occasionally, Ann would check in with me, to see how I was doing. She reminded me that I should save energy for the way back, and that I should listen to my body, stopping if I needed to. That they would take over if necessary, and I could just sit back and enjoy the ride.
There was no, “Are you ok? Are you sure?” or “Here, let me help you,” or “ Oh honey, what happened to you? You poor thing!” There was just instruction and then doing it. I began to feel sure of myself, as I propelled the boat forward. I began to feel stronger than I had in a long, long time.
It was a perfect morning. We watched for turtles as we paddled. A pufferfish bobbed along beside us. Kari prodded it gently with her paddle. Pufferfish are both poisonous and a delicacy. When threatened, it will take in enough air so that it floats to the surface of the water. I fought the urge to poke it with my finger.
As we neared the surf break, Ann started watching the waves. Once she saw a promising one, Kari and I set off. We paddled hard, approaching it at an angle, and reached the wave just as it was beginning to crest. As we rode it, we picked up speed and paddled even harder. Soon we were flying. At the bottom of the wave, I looked over at Ann and grinned. “Let’s go again!”
We rode waves for a while, never flipping once. But the pain in my back and hip steadily increased until I could no longer ignore it. I was tired on the way back to shore, and we paused occasionally so I could rest. Once we landed I transferred into the beach wheelchair, and Kari pulled me back up the hill.
I was on a high: from adrenaline, and dopamine, and novelty, as well as from being around new people, something that I hadn’t experienced that entire year. Maybe soon, I thought, my husband and I could take a waveski down the river together. It’d been such a long time since we were able to do physical activities as a couple. I was hopeful. Before I left, we talked about when to schedule the next session.
Was it worth the gamble, those precious minutes out in the ocean?
The next morning I woke up in excruciating pain. It didn’t go away. Two weeks later, after x-rays and an exam, I learned that my back and hip muscles were stuck in spasm, causing partial joint dislocations, and impinging on my sciatic nerve. I had soft tissue damage, but luckily no fractures. The clinic referred me to a back surgeon for further evaluation.
“I knew it wasn’t going to last,” I thought. My mind flashed back to being out on the water, the smell of the salt in the air, the sun on my skin, how good I had felt. The feeling sat like a rock in my belly. Maybe it didn’t matter how much I tried. Maybe I would never be able to go back.
The next two weeks were incredibly painful. There was the physical pain of the injury, and also the emotional pain of knowing that using a waveski is not safe for me. All that effort, all those wonderful people, all that hope—for what? My disease is a constant exercise in letting go.
Was it worth the gamble, those precious minutes out in the ocean? I don’t regret it. Unless there is a scientific breakthrough, I will live in pain for the rest of my life. To avoid pain is to stop living. I keep thinking about the pufferfish, full of poison, so threatened by something that it filled itself with air, floated to the surface and played dead. I don’t want to play dead.
I’ve found myself reliving being out on the ocean. Sometimes it comes back to me at random moments. The way the paddle cut through the water, then the sensation of being propelled forward. How the waveski would shudder to a quick stop as we’d crest a wave. The calm peacefulness of the day, the gentle rocking of the water.
When I came back to shore and looked back at the surf break I’d paddled to, so far away, I felt powerful. I felt like possibilities had opened up to me. Sometimes all I want is peace, and cool water, and to feel the tradewinds on my face.
I texted Ann and Kari yesterday. The next time we meet, we’re going to try snorkeling.
Lead image: Allison Wallis (pictured in the red life jacket) navigates the waves with help from adaptive surf organization AccesSurf.
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