“You’re sort of in between, aren’t you?” an old friend asked me recently. She’d been through it all with me — my diagnosis of a rare spine cancer two years ago, the radical multistage surgery, the long rehab stint, the longer convalescence at home, and the eventual finding that I’d suffered a complication in surgery that caused a spinal cord injury and what will probably be permanent paraplegia. My sports-toned and -nurtured legs hadn’t responded to rehab the way they’d been expected to because they couldn’t.
What my friend was saying — and why I was nodding along — is that I don’t fit in the most recognizable spinal cord injury groups. I’m not in a wheelchair anymore. I’ve learned to stand for long periods. My naturally dark skin tone returned once I got back outdoors. For most of my professional life I’ve reported and written about athletes and adventurers. I’ve climbed Grand Teton in Wyoming, trekked the Darien Jungle in Panama. In a photograph recently taken of me in front of my weather-beaten New England barn I look a lot like I used to. “Defiant,” she said.
But I’m sure that the visit I made to her lake house a few weeks earlier was in the back of her mind. I’d joined her and a half-dozen other friends; it was my first time there since my surgery. A party barge was next to shore for easy boarding, and though I was able to edge my fanny onto the low loading deck and hoist my legs up, I couldn’t get up from there. Everybody was trying to be cool and respectful but nobody knew what to do. My helplessness was striking.
I’m what’s known as an “incomplete,” meaning I have incomplete paralysis below the level of my spinal injury. I walk with a stock right-side cane and a discreet brace resembling a shin guard that slips into my shoe to help raise my limp left foot. When I run into people on my walking route for the first time they sometimes offer guesses as to what happened. A broken leg? A recently reconstructed hip? They’re thinking a temporary condition, not paralysis.
The American Spinal Injury Association has a scale of “incompleteness” and I’m an ASIA D — meaning “more than 50 percent of the muscles spared below the level of injury are strong enough to move against gravity.” At some point in recovery my muscles edged from “not useful” to “useful.” Last summer, after many months of training, and a bit of adaptive tinkering, I taught myself to ride an upright pedal-assist e-bike. It has low, step-through frame. I use clip-in pedals to help pull my “dead” left leg through the motion. Mostly I look like anyone else on a bike.
At a stop sign, however, it gets interesting. I restart with difficulty because I have to shove off skateboard-style a few times with my right leg and only once I’m coasting can I pull up my right leg with my opposing hand to place it on the pedal platform. (My right leg can’t thrust upward on its own because I’m missing my psoas on that side; it was removed because the tumor was there, too.) Most times I get through an intersection without trouble. But in an early trial I stumbled and caused an embarrassing slowdown at a four-way stop. One motorist screamed something and my older brother, who was my riding partner that day, screamed back: “He’s got a paralyzed left leg, O.K.?” It was nice of him to defend me but the motorist might’ve been forgiven. Paralyzed? I was on a bike.
I am close enough to the physical life I adore to touch it, close enough to feel that a brilliant physical therapist or a smart tech innovation could bring me back to it in full. But I’m still far enough away that young children stare and acquaintances offer to drive me from place to place. I can push my legs forward but I can’t shake them awake for a vigorous effort. I crave that red zone feeling, the fierce power and pain that comes from big leg muscles bursting beneath you. But I can get there only in my memory.
When I was first trying to get a grip on exactly who I was now I told my physiatrist I felt like a “mishmosh.” Perhaps exhausted by the prospect of a full inventory of my right and left side muscle groups and the physical “actions” they couldn’t quite pull off, he simply agreed, “Yes, you’re a mishmosh.”
In being a part of this in-between world, still thinking I might belong to one instead of the other, there is another problem — identifying my tribe. I wish to be part of an active crowd, but it’s confusing. My local fall 5-kilometer race invites runners, walkers and wheelchairs. None of those categories is quite right for me.
In a way, I identify with youthful athletes who’ve been tragically struck down only to rebound in some unique, indefatigable way.
But my tribe also seems to be the older, retired neighbors I see on my walks. They often encourage me. I typically get a wave and “you’re doing well” (though out walking in a snowstorm last winter I did get a circumspect “you’re a stubborn one, aren’t you?”) I have their aches and pains. I share their fears about safely getting around in a too-fast world. They look out for me.
There are a handful of psychological stages involved in coping with a disabling spinal cord injury. The final one, which the pamphlets say is the most important, is “acceptance.” But I’m not accepting. I time myself on walks, use an app to chart power data in watts. I’m a little happier with myself when I set a personal record than when I don’t. I think and behave like the athlete I was. I can’t stop. My friends are comforted by this crazy behavior. It is in my nature, evidence that I haven’t changed. I’m relentless. My eyes are on the prize.
Out on my own I can almost forget my disability. The numbness I get in my legs on walks is familiar enough now that it’s almost like a weekend warrior’s baggage — there, but in the background, like when the ache in a hoops player’s arthritic knees vanishes at tip-off. But then, at a summer wedding on the edge of a frenetic dance floor, my differences are exposed again. I am new to this. I suspect this “them” and “us” dynamic is well known to the disability community. I’m sure I’d find shared comfort there. But I’m in limbo. To pull closer to that world feels like giving up on the other.
I am told that in some cases Mother Nature smiles upon a person with an injury like mine. I often imagine nerves lengthening and muscles awakening as I plant my legs extra purposefully on my walks, thinking in my uninformed way that mental power or an act of will might spur something I cannot know or see. And yet the window is likely closing on natural nerve regeneration. Nerve repair ordinarily happens in the first year. It’s been two.
I am tempted to pursue my recovery as far as medical science will take me. I hate shutting the door on the possible. My legs made me. They defined me, carrying me for as long as I can remember across wild places, up steep, punishing trails. I’m looking at my legs now. They’re beneath me. But they’re not.
Todd Balf, a former senior editor at Outside magazine whose writing has appeared in the The New York Times Magazine, GQ, Runner’s World and elsewhere, is the author of “The Last River,” “The Darkest Jungle” and “Major.”