I used to think that having multiple sclerosis was all about loss. And all about acceptance of that loss. The best analogy for how it feels to have a neural traffic jam in the c-spinal cord is the way you feel when you set out on a major approach, on the first steep uphill, the one you have to push through knowing you only get to that summit foot by foot and soon your body will get “on plane” the way a boat gains easy speed once it gets up on top of the water. Only I’d now lost the planing part and all that remained was the endless heaviness of limbs. In a world where winning against or with gravity is a dance of joy I had utterly lost and must learn to live with only the weight of it. And that weight was going to keep changing, along with the terms of the fight, and the next loss, and heartbreak until the new acceptance.
For me what cut was losing a deep and right physical connection, one directly through axon, joint and muscle, to what I love the most: movement in the natural and the wild. My very first memory—I was told this was at age 4—is the bouncing motion of the backpack in which I was hoisted on my mother’s back, and the pounding of her feet, her rough breathing, as she fled the porcupine rushing us. Because, she had chucked a little stone in hopes that his ponderous response would reveal his camouflaged form in the disorder of sticks and needles on the forest floor. Instead he charged, fully inflated bristlecone, and afterwards I imagine we laughed until tears rolled down.
Later, but in short order really, my feet would reach that ground and the pack land on my own back, as my family became mountains and the southern San Juans of Colorado marched through my dreams. Big shoulders and icy fresh water that we drank out of our cupped hands, mad lightning festivals, and marmots piercing alpine air with their whistles. Bears beyond the thin tents in the night. And always, my trustily proportioned and coordinated Irish self, infused with a good solid dose of Swedish hardiness, a combination wrought in the gold rush of the late 1800s. I could hike for days with a pack two thirds my bodyweight. I could jump across, balance over, swing under, not slide, not fall off the cliff, leap giant strides on mountainsides of grass, glissade thousands of feet down on my rain jacket or in my boots, gain energy from altitude, and walk outside myself in tundra and thin air. And I loved every inch of it, every moving thing, with my whole heart. After all, my Irish father cried when the aspen leaves changed color and we dutifully carried misguided spiders out of doors. It comes with the surnames.
So during these six years now since diagnosis, simply the arbitrary point when someone gives the name MS to your neurological freak show, I was forced to move out—out of my pure and easy identification with gymnastics, lacrosse, high-siding, skate skiing, telemarking, field mapping, dancing, hiking, climbing, windsurfing, walking solo in and out of Grand Canyon, doing equine bodywork on Percherons and ponies, learning how crustal plates move, learning to read current over sandbars, learning to link my own proprioception into the signaling coming up through the horse’s moving body, from understanding the flow of water in springs and the flow of life in wildlife corridors, to finding the expression of all this in wildlands conservation. I’d call it activism for preserving movement.
Kicked out. Face planted. Out of the game. Hanging on to a piece of driftwood called disability while taking it all out of stride.
I have a pit crew. Wild people who like to pick things up, who like to hoist me piggyback, who walk thousands of miles across continents for nature, or the length of Grand Canyon because she’s attached somehow to their bones, climb things called Somebody’s Thumb or Temple. I’ve let them hold my surf board while I’ve been learning to ride, while I’ve been learning that we have a culture of “compulsory able-bodiedness,” never mind that we nearly all will be or have been disabled, learning that I’m still way better at this than the average city slicker, and that when my dad used to talk about the NO TRESPASSING sign that didn’t say NO TRESPASSING BILL BURKE, he meant I’M ALIVE AND I’M ONE OF THE WILD AND FREE.
Tonight, I sat down and watched the trailer for the upcoming 5Point Adventure Film Festival, because my towering friend Stacy Bare is playing the part of MC (I’m a straight up 5’2”), and aside from feeling a gigantic longing rise with the music and the wild places, and the faces and the adventures, I glimpsed someone walking with poles with a foot that seemed to slip sideways out of the “sagital plane,” someone in a wheelchair, someone saying this is the lifestyle we live and breathe every day. I could suddenly recognize that MS is all about longing, and this longing is something I’ve actually always felt. It’s called love, and that manifestation of love called life, moving breathing life, is something worth LIVING for, on behalf of. It must be because I feel ready—the runway feels cleared to write, and I to rejoin my tribe of purposeful adventure athletes. Ready to save nature, on the run.
These days I do gravity sports. Drop things and myself regularly in a kind of product testing—yup, still working. One day, one thing I drop will fly up and off, with the dog leaping after it.