“My prosthesis is not my narrative, but my narrative is my prosthesis”
“This is not my disk”
When I actually talk about the disc in my neck—the probable source of my vertigo, “functional gait disorder,” email-resistant double vision, and muscle spasms that take me to the ground—I usually tell people I fell off my bike in that triathlon years ago. If so, I’m lying. Yes, there were 30 to 40 mile per hour headwinds. And people were falling off their bikes left and right. I was too scared, though (because of the time I tore my hip flexor) to risk falling and having that sports injury again. That had been a pain in the…well…psoas, and flared in ways that could keep me from running swimming or biking for days, even weeks.
No, I didn’t fall off that bike; I stayed locked on, my hands iron gripped to the handlebars, head down, as the wind battered me back and forth. As the gusts of wind slammed me, I found a way to keep my head, neck, and shoulders fear-frozen to the handlebars: a crazy mantra I had come up with in that moment about my advisor who was about to die, over and over. “if Jay can handle cancer, you can fucking stay on this bike!” I repeated it until the sound of it in my head drowned out everything around me: the other riders, the wind, the race. Screw the scenery. I never looked at that much anyway; I was gonna stay on that fucking bike.
I did. And, as the story goes, I finished the race. When I got off my bike to transition to the run, my neck felt fine, but my legs felt like lead. Poor training, I thought to myself. I should’ve packed an energy bar. And as I did that run, lead-legging it, I was surprised how much my body wanted to stop and walk. This was just a sprint triathlon, a mere 5k. Sure I wasn’t flying; not expected. I was one of the slowest runners on the triathlon team. But as the team (and my friends) knew, I could always be counted on to push through—an energizer-bunny of a bodymind that could keep “going & going & going.” And I was proud of my battery-like status, even if I couldn’t sprint for the life of me.
So when someone tapped me, breaking my daze to signal that I should pace to beat the person ahead for the team [the one and only time this ever happened :-)], I was so proud that I “sprinted,” legs loping unevenly, body begging to walk, across the finish line… just ahead of the girl from UC Berkeley.
Usually I stop the story there before people can ask how in the world I slipped a disc in my neck without falling off my bike. How the hell do I know? I know it’s vexed, but I’m still proud they tapped me for that triathlon.Hey, a girl’s human, no matter how twisted the logic, especially at 26. As it turns out, that cue—my body’s desperate cry to come into my physio-cognitive twistiness—is the reason I’m grateful I’ve got this contraption in my neck, even on the days I curse it.
I’m bionic.
I now sing “I am titanium” at the top of my lungs, even though it’s mostly made of steel. This disc in my neck, exemplification of early-FDA biotech malfunction as it may be, still helped me. Because even when it moves (in fused torque) to create searing nerve pain when I wanna look up at the stars or leaves me in bed on medicine that dulls my mind for days because I lifted groceries wrong, this fucking artificial disc, the Prestige—a one-size-fits-all technological dinosaur that made me a 4th of an inch taller—also…slowly…damn slowly, began pulling me away from my own neurodivergent version of the academic rat race, where I drove my body to exhaustion just to keep my mind from flying so fast, or compulsively tallying my miles per hour, or adjusting my synonyms over and over as I write.
And so even when my body hurts—on a bad day when I do something “dangerous“ like tilt my head to the left, or fail to maintain proper ergonomic posture—and pain shoots through me, or causes a blow-out (what I call “Franken-Nat” unable to turn my head more than a few centimeters left or right), I’m…grateful… painfully grateful. Because having this thing in my neck got me to see how insanely stuck I was/am in the academic “Prestige” system….According to the perfection-wired parts of my brain, having the “strength” to do everything, working my hardest, down to the 13th (or 30th) edit of an essay.
That’s not to say I don’t keep doing 30 edits of a paper by the way (be it a student’s paper I’m grading or the one I’m writing now) or that I don’t still clock my aqua-run walking down to the minute, battling against cognitive demons if it’s 29 minutes instead of 30. But at least I could start to see it. And disentangle myself to a point where I’m not living life in a flat-out run, a disembodied (#metoo) race through the world and away from the nonlinear chaos in my mind. Now I actually can—at times slowly and painfully—walk, even jog if I’m lucky. More importantly, sometimes, just sometimes I can actually be present in my body and notice the world around me…the trees, a neighbor, just the sound of my breathing at night…rather than my steps on the Garmin.
And if it’s a really good night, like tonight, I can even consider celebrating neurodiversity for myself, not just others. And laugh a bit at my neuroses…and be grateful that I’ve actually been able to slow down and acknowledge them thanks to the 2 x 2 hunk of malfunctioning metal in my spine.
On these walks, I feel the beauty of being able to walk, embodied, at all kinds of paces. When it works, in one of those divine ephemeral flashes, I can begin to (slowly, sometimes) see the world afresh. To appreciate novelty and beauty around me—flowers, trees, the feel of breeze against my skin, even the grass I’m spasming on when I go down—and *be* THERE. Feel the wet-soft spikiness of grass, the color, the texture… According to Shklovsky, my disc works like poetic language. It slows perception, with mind-time to stop and see a flower, refusing to let me move at a certain self-prescribed pace [sustaining that long-dreamt-of-slightly-under-8-minute mile 🙂 ]. Walking, even when my gait freezes so my heel won’t go further than my toe, on days like these, I can feel—rather than just theorize—the novelty and wonder of the world around me.
My friend says Michigan State University is “dog-eat-dog”; as he puts it, an R1 where “you eat what you kill.” For me, MSU has the beauty of a hive, a place where I can imagine writing an essay like this—now, ahem, with tenure…—where I don’t have to be afraid of admitting I have this device in my neck for fear of losing my job. Where I have not just the lab, but an ever-growing community of people who know about my neck, about my fear of showing weakness. About my OCD-edging perfectionism and nonlinear mind. To me, it’s a place where we are all human, also a chaotically beautiful space for hive-mind. Where I show my no-longer-so-invisible disabilities over and over and over again to my students, my colleagues, my friends. Where I share my professional and academic life as openly as I can [or simply have to because they see me 🙂 ]. Where students are the ones who nurture me and support me and step up to lead without judgement. And where, when I write something like this, I share the first draft with them, and jump on Google Drive to work together (a document that today I cannot see) because that’s what we do. How we roll.
And this online space, a techno-biological remix of zoom and notes and voice dictation, amidst the Google Drive maze of comically titled lab documents, we find a place where we can write, together. Where I can write. Not by myself, editing word-by-word, phrase-by-phrase, but in community. Where we all tend to write together just because that’s what we do. Because that’s what works. And there, then, I’m not running. I’ve lost my tethers: here, I’m in hive-mind community, interdependent by the force of lived reality. Here at the Digital Humanities & Literary Cognition Lab, I might be lying on the ground spasming.
But I’m flying.
HIVES 