Cross-Country Crutching: how #vanlife helped me come to terms with disability
[Originally published in Argot Magazine]
I lost my mobility in 2013, and in 2016, I finally let myself think about it.
I mean. I’d been thinking around it for years — constant clicking grinding agony and the loss of all your hobbies is hard not to notice. Four years ago I was a lifelong exercise addict, so compulsively endorphin-dependent that two days of bedrest while feverish would trigger hysterics. Over the course of three years I watched the pain crack its way out my patella and unfurl tendrils into my other leg and then my wrists, until all my limbs were out of commission. At first it only hurt too much to run on asphalt, so I made my way to a spongy-surfaced track. Then I couldn’t run at all, but I could still hike; I couldn’t hike, but I could bike; I couldn’t bike, but I could still walk to the grocery store; I couldn’t walk, but I could canoe and lift and strength-train; and then the pain took my wrists and I had nothing left. So yes, you could say that I’d noticed.
But over three long years of loss, I’d refused to look directly at it. If I let my brain graze against the enormity of Disability, I’d be struck adrenaline-rigid with all-consuming fight-or-flight panic, thrumming with the desperate need to run, run, run the problem away like I had done with every problem before it — but of course this time the problem was that I couldn’t run. For a single agonizing moment of honesty I’d vibrate with electric despondency and then, overwhelmed, I’d thrust it away and fill my brain with someone else’s thoughts.
For years, I carefully avoided the things that made me happiest. It was too hard to go camping and sit idly at the campsite while my friends leapt mountaintops in a single bound. The prospect of sending them off in the morning and then watching them return, sweat-glazed and flushed with accomplishment, was physically nauseating. Better not to get too close.
I was stable, for the most part, but I wasn’t coming to terms with anything. Something needed to change.
That change came when three of my friends and I decided to buy a van and live on the road for a while. We all had our reasons: one was attending med school come the fall and wanted a last hurrah; one hated her job; another had recently quit her job; and me? I was going to “come to terms with disability,” I said, by sequentially staring down everything I’d loved and lost and roiling in the grief of it until all that despair became so much scar tissue.
The first time I let myself think about it, it knocked me off my feet. I spent two hours sobbing in bed, and when my brain tried to twitch away — to think about something, anything else — I jerked myself back into the muck. “Look at it,” I told my piteous, mewling lizard brain. “You can’t get away from it so look at it.”
That day, I thought a lot about going limp.
My brother and I used to do it when we were kids — swim out past the breakers and then relax every muscle and free-float in the eddies of the ocean, tugged in one direction or another by a larger force that had neither concern for nor interest in us. Going forward, I decided, when I felt the panic rising (that awareness that I’d never have the things I wanted, that I’d never be the person I thought I would be, that I’d never get to do the things that brought me the most happiness that I’d never be happy) I would just go limp, until it passed or didn’t. It was meditative, in a way: still the body; still the mind; wait. If something nudged me in a direction I would let myself be nudged. If nothing changed, there I would remain. When I felt the pain, I wouldn’t try to erase it. When the pain never stopped, I’d breathe it in: let it become my new home, cloak myself in it. Maybe it would pass! Likelier it wouldn’t. The important thing was not to care.
I laid out some ground rules. I would breathe in the happiness of others and try not to resent them for it. I would exist as an observer and not a player in our world, but would enjoy observing as best I can. Forget hiking. Forget moving without pain. Forget wanting. Exist as a mote of dust or a strand of seagrass and drift, and when the current lets you drift past something good, don’t wish it was yours, just watch. Relax your muscles. Open your eyes and ignore how the saltwater burns. Listen. Wait. If you zoom out, see yourself from above, you can already see the breakers ahead: it will all be over soon enough.
In those days, it didn’t take much to set me off. I could be coasting along, shifting my weight to accommodate intermittent twinges of pain but otherwise unbothered by disability, and then the TV I was limping past would show a short clip of a camera panning across the Himalayas and I was undone. I had no idea how much I assumed I’d climb a mountain one day — a proper mountain, capped with snow and riddled with treacherous terrain. I’d train for a year or so, running further and hiking higher until eventually I felt ready to take on The One, and when I got to the top I would really have done something, you know? At the top the air would be clear as a magnifying glass and it would sharpen the land below me into shocking clarity like I could see the entire world, like I’d climbed right off the earth and into the sky. It’s the most prototypical Challenge in the world. But I’d never climb a mountain.
Camping, too, was triggering. God, it hurt the first few nights we set up camp in a new land and I looked at a spot on the horizon and thought: I’ll never get there. Every time I brushed against the borders of my body’s new boundaries was like probing my tongue into a familiar nook in my cheek, only to find a shard of glass embedded deep in the meat — almost more violating than painful.
Some environments were easier than others. Clambering up and around the massive, absurd spires of rock in Joshua Tree or the Moab Desert was relatively accessible, since I could distribute my weight evenly over all my limbs. Lakes and rivers were a giddy delight, source of both endorphins (when my wrists could bear the impact of swimming) and the adrenaline of shock-to-the-system cold (when they could not).
Others were harder. Winter, in particular, was a challenge: I’ve always been able to keep warm as long as I kept moving, but when I could no longer run or walk or even do push-ups, I found it suddenly impossible to maintain any semblance of homeostatic equilibrium. Stillness and meditation may be the answers to finding peace in the forest on the California coast, but it turns out if you try to sit and listen to the wind for an hour in the Rockies in December, you’ll fucking die.
The suburbs were another nasty surprise. Cedar Rapids, Iowa was my first time looking at suburban hometown life through the cracked smoked lens of disability. My vanmate’s tour of the greatest hits of her high school life included a hearty helping of sneaking and clambering and some light trespassing — which are, of course, rather difficult when you can barely walk. I hadn’t thought about it in a while, but teen shenanigans had always felt inviolably mine, that perfect sweet spot of action and low-level danger and wholesome adrenaline. Bumping up against the limits of my disability in a context that was so deeply associated with boundless puppy energy and youthful invulnerability felt violating on a level that I couldn’t have anticipated.
Cities are the hardest of all (rather inconveniently, since that’s where society has agreed that we’re to spend our 20s). There’s not a transit system in the world with consistently functioning elevators — though it hardly matters, since a two-block walk to the station would be agony anyway. I’ve yet to find a way to move myself from point A to point B that doesn’t require another person’s assistance. Electric wheelchairs are a potential solution for day-to-day mobility, but for an able-passing person like myself (one whose limiting factor is pain, not ability), disability-flagging can be a minefield. I’ve seen the way Reddit lights up with jeering vitriol when they spot someone in a wheelchair standing up for a moment. The prospect of being publicly shamed as an indolent fraud has kept me out of a chair except when absolutely necessary.
I still remember the first time I tried using a wheelchair, in an experimental day-trip to the Brooklyn Museum. New York, I learned, is a veritable hellscape for wheelchair travel: navigating those streets calls for deft, confident movement, and being pushed slowly by someone else’s inexact hand after a lifetime of agile navigation was agony. I was excruciatingly aware of how much space I was taking up, how slow and cumbersome I was relative to the river of foot traffic rushing past me. Idling at a crosswalk, I looked left to find myself paralleled in miniature: an infant in a stroller being pushed by a girl no older than 4 or 5, both of whom looked at me with contempt as though to say, what’s your excuse? Aren’t you big enough to walk on your own?
The wild was easier than civilization, I found. Out in the forest you establish a campsite and stay close. Walking on dirt hurts less than pounding pavement, and your priorities are simpler: make fire. Cook food. Read. Sing. Touch. Stay warm. Sleep. Cities bring with them a whole bevy of destinations, each involving micro-commutes: between the van and your friend’s house; the van and the restaurant; the upstairs bathroom and the kitchen; the couch and the bathroom. In the wild, everywhere is your bathroom.
I’ve always been a forest creature, so it’s no surprise that it was the woods that finally showed me the beauty in stillness. Floundering through tangled undergrowth into total isolation and then sitting quiet with the trees lets you inhabit the space more intimately than you would by tromping through it. Your peripheral vision widens; your attention sharpens; and before long you can feel the way the forest shifts and breathes. In a half hour your eye will catch every wingbeat and every falling leaf, and your ears will prickle with every creak and crunch of shifting wood. In an hour, each falling drop of water will form the gently arrhythmic percussion of some impossibly large, infinitely subtle design. If you hold still for long enough, the forest will forget that you’re there, and will let her hair down a little: the rustling of critters rises in the undergrowth; the birds grow nearer and more curious. I think I could spend lifetimes this way.
There were even moments where disability felt like an asset. On the shore of Crescent Lake in Olympic National Park, I got lost in conversation with a vanmate into and then out the other side of sunset. When we gathered our wits we realized that all light had faded from the land, our headlamp was dead, and we were a hundred or so yards of very uneven terrain from our van. Fortunately at the time I was still able to use my crutches (god I miss my crutches — four months later, the pain would take my wrists). As a quadruped I could plunge forward confidently through the darkness, bounding ahead with my metal legs first and calling back warnings as I encountered tripwires and pitfalls that might have toppled a bipedal mammal.
In the absence of physical strength, I learned to seek other forms of competence. I learned the language of fire: how flame consumes pith differently than fresh wood; where to blow to get the fire to lick up into one nook or another; how to place each new log to avoid stifling the flame. I learned to fish, in spite of how absolutely grotesque I found spitting a living thrashing worm on a forked hook. I bought a cheap ukulele on Amazon. I dug deeper into fiction writing. When I spent a demoralizing month hiatus getting stuck full of needles away from the van and my wrists went out such that I couldn’t even use a wheelchair, I got really into videogames. I made do.
These days I can explain the limits of my mobility to a stranger without bursting into tears. When the panic rises, I don’t usually cry for more than a half hour or so — 45 minutes on a bad day — before it moves through me. I’m well-practiced at saying no to bar-hopping and days at the park and romps around the city. I know how to pass a day alone at home without feeling absolutely worthless by nightfall. I’m better.
I still dream about running two, maybe three nights a week — dreams where I remember I should be disabled but find myself loping along anyway, weightless and giddy and wondering if the whole nightmare of chronic pain was only a dream, and then I wake up. Once every two or three months, my frustration peaks and I end up walking beyond my limits — nothing crazy, three or four blocks maybe, but beyond my limits nonetheless. Every time, it is the best thing I’ve ever felt. Feeling my body propel me forward, feeling the air on my face and seeing the scenery change and passing strangers and being passed by strangers and peering through windows and crossing streets — every time it feels as blissfully viscerally right as I remembered, and for an hour I foolishly wonder if I’m miraculously cured, and then night falls and the pain knocks me breathless and I remember that I’m broken. I’m better, but I’m not okay.
But hey, I’m moving in the right direction. I’m investing my energy in the people I love, and I’m blessed with many. I’m more productive creatively than I’ve been since I was thirteen years old. I have momentum, if not physically. I have a trajectory, even if it’s not moving toward the things that have always made me happiest. It’s easier to get out of bed than it was a year ago.
I still go limp now and again, though these days I call it “meditating.” I know it sounds like a passive way of dealing with my problems — how can you ever change the way you feel about something without engaging it more actively? But the tricky thing about chronic pain is that you’re never going to feel good about it. Despite years of well-intended friends scrabbling for silver linings, I have found no upsides to immobility and ceaseless pain. I can make the best of my situation, of course; I can redirect my energies towards the things that are still accessible to me, but I’ve lost endorphin highs and long walks and spontaneity and independence and the ability to ever be physically comfortable in my skin, and that is only a tragedy.
At the end of the day, though, happiness is relative. With enough tenacity and flexibility and patience and creativity, my standards will reset, and I’ll be able to live without constantly comparing life to what it could have been. If I can just wait long enough, eventually I will simply forget what it was like to move through the world without pain.
