A writer’s quest to preserve her mother’s love of travel helped both women embrace a new reality. (David Fortney/Getty)

Adventuring with My Disabled Mom Healed Me, Too

After my mom suffered a massive stroke that left half of her body paralyzed, my family and I decided to create adventures where none seemed possible

Mom leans her head back against the wheelchair’s headrest to gaze up toward the tops of the redwoods. These forests are a kind of sanctuary for her, having lived amid such massive trees for more than 20 years. It’s an October afternoon in Samuel P. Taylor Park just north of San Francisco, and as I push her down the roughly paved path winding alongside Lagunitas Creek, home to spawning salmon, trees tower on either side. Ferns cover the shadowed ground, interrupted by lower sweeps of redwood sorrel that blanket the earth with their small, heart-shaped leaves. When sunlight touches the sorrel, the leaves fold downward to protect themselves, then right themselves once direct sunlight has passed. Amazingly adaptive, this species. Able to change when changing is required.

Once, my mom got our minivan stuck inside one of those redwoods you can drive through. We tried pushing and pulling it, floored the gas, but nothing worked. Finally, with no options left, we deflated all the tires and strangers helped us propel it forward and out. I start to remind her of the story, but a quick intake of her breath makes me stop. I listen, on high alert for any sign of pain or distress. 

This is the first time I’m taking my mother somewhere remote by myself, and I’m scared. We are deep in the forest, far from help. My mom throws an arm—the good one—out to the side then, a surprising gesture. She tilts her head back, and I tense up. We are outside cell-phone range, so an emergency—of which we’ve had many in the past couple years—would be a disaster. She isn’t wearing her helmet these days, even though the part of her skull that was removed to get at the bleeding in her brain was never successfully replaced. But we are wild women. We are risk-takers. Or rather, she is.

But instead of yelling out in pain, she begins to sing. She can no longer speak, but it doesn’t seem to matter. She repeats the one sound she can make—na—and weaves it into a tune of her own making.

(Courtesy Tessa Fontaine)

Two years earlier, my mom had a massive stroke. She was 64. It left the right half of her body paralyzed and with full expressive aphasia, which means she has lost the ability to communicate using any form of language—verbal, written, or manual, like signing or gesturing. After more than a year in hospitals and rehab facilities, she came home. 

I was worried—no, I was terrified—that her physical and cognitive changes would render any kind of future adventure impossible. Gone were her days of performing stunts on surfers’ shoulders, or mending fishing nets on turbulent Oregon ships, or simply traveling through the world with ease.

But my stepdad refused to let her remaining time resemble a typical sick person’s life. “We’re not gonna sit around, smelling like urine,” he said. He bought her an off-roading wheelchair, with big bike tires in the rear and oversized, inflated wheels on the front so they wouldn’t get stuck in the kinds of divots that snag her regular chair. He added to it, modifying for her comfort and ease of adventure. We decided that, as much as was possible while she was alive, we would do whatever we could to help her really live.

Mom is sitting in the adventure wheelchair during our redwoods trip. The extra-big tires roll smoothly over branches. I allow her song to steady me. In our new arrangement, I try to gain some of her adventurousness: I push the chair a little faster, veer off the path and into the forest. Here the ground is soft, with layers of bark and needles and the debris of long-dead things recycling themselves into soil. Two black-tailed deer hold still up the hill to our left. A new redwood tree shoots up out of a fallen log, creating life where none seemed possible.

Together my family created adventures where none seemed possible. A year after our trip to the woods, my stepdad set out with my mom on a journey over land and sea—a person can’t fly when missing a piece of the protective skull around the brain. They arrived in Italy to kick off the world travel they’d always dreamed of but had never been able to do. Up to this point, my mom had endured dozens of complications, including brain surgeries, infections, regressions, sepsis. Nobody, my brother and I especially, thought they could make it work. It was too physically impossible. Too exhausting. Too risky.

But they did, and my mom became obsessed with gelato.

Three years after that, challenging the limits of which trips could be undertaken, and how, and by whom, they took another journey to Greece, where my brother and I met them for a week on the island of Rhodes. There we pushed my mom up and down the cobblestone streets of the ancient city and carried her up castle steps.

Mom had always loved swimming in the ocean but hadn’t been able to since her stroke. On our last day together in Greece, we took the adventure wheelchair and swapped out the back bike tires for enormous inflated inner tubes almost the size of small car tires. We called this version of the chair Bubbles, first wheeling her smoothly onto the sand, then cruising down the beach, before slowly, carefully turning into the water. With my stepdad in front and my brother and I steadying either side, we took the chair into the sea as far as it could go and then began to ease her body out, supporting her on all sides. She floated on her back, all of our hands beneath her. Then, blinking up into the clear blue sky, she smiled and sang her song. It was the happiest I’d seen her in years. 

She closes her eyes and listens to the changing sound of the creek as we walk alongside it. And with her, through her, alongside her, I do the same.

All of that is coming soon. Right now mom and I are weaving in and out of the redwood shadows, pressing our hands against its bark, wheeling into tree holes big enough for the both of us. In the wheelchair, we go slower. There’s no urgent need to cover much ground. Instead, she examines all the details that make up her immediate surroundings. She closes her eyes and listens to the changing sound of the creek as we walk alongside it. And with her, through her, alongside her, I do the same. 

Not far from where we are walking, at another point we’d often visited before her stroke, a peninsula of land juts out just past Point Reyes. In this place, for reasons that aren’t entirely clear to scientists, seabirds who become lost as they fly along the coast, or across the ocean, congregate. They are called vagrants. Trees fill with species rarely seen in the area, a collection of birds who have lost their way.

I feel like that with my mother sometimes. The journey we’d been on became lost to us, but we didn’t fall into the sea. We found a new peninsula. Regrouped in the trees. And set off again, changed, but taking wing toward something new.

Lead Photo: Skyimages/iStock
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