“Little things pile up. But these ‘little things’ don’t close or intensify in such a way that a thisness is easily formed. It is hard to pull a thissness out of the ongoing flow of the everyday because so much decomposition happens below the threshold of awareness and theorization. The event is a pile of clothes in the washroom, a roll of linoleum in the kitchen.”
-Elizabeth Povinelli, Economies of Abandonment
There is an unusual power in the ordinary. It has a unique gravity that tugs on us and pulls us in close without our ever knowing it’s there, or at least without our ever caring that it’s there. Until we encounter the extra-ordinary, or find ourselves in circumstances that seem somehow “out of the ordinary,” the one-thing-after-another of ordinariness, the this-then-that-then-thisagain of the everyday holds us together, swaddles us, props us up like scaffolding. The ordinary makes sense, and is sense making, without being sensible or sensed. Or, we don’t sense it as such, even if our senses are constantly brushing past it, straining against it, shaking hands with it, sharing a bed with it. You know the texture of your favorite jacket and the places you’ve stained it, you know the way the concrete feels underfoot as you walk to the train in the morning and the smell of the meals you’ve made over and over again, you know what it is for the water to be too hot, or too cold, and what it is for the shade to be lifted too quickly after staying up too late. The ordinary makes sense, and is sense making.
A little less than a year ago, I woke up with a sore back; sorer and stiffer, that is, than usual. My hips were stubborn, both leaden and frail, as if they’d been filled with concrete then left to crack and crumble, heaving and twisting in the winter, slackening again in the spring. I blamed it on the mattress and the pillows, which weren’t my own. They gave too easily, were too soft, pressed and yielded in all the wrong places, not like the bed at home, which was firm and steady and held me in line–head with spine, spine with hips, hips with feet. A bit of extra stretching and some pills, and I forgot about it.
But the stiffness persisted through the next day, and the next; that soft bed putting bolts into my joints every night, leaving me to painfully unscrew them in the morning. If the ordinary is like a scaffold (a term I am poaching from Kathleen Stewart)–some patchwork of bars and planks and rivets lashed together with scrap plastic and aluminum–this new ordinary did not fit my body. Or the other way around. It doesn’t matter. It was as though I were being squeezed into some shape that my body wouldn’t (Or couldn’t. It doesn’t matter) tolerate, and my bones were staging a general strike–standing their ground, blocking intersections, interrupting business as usual.
On the third day, or the fourth, I began to lose feeling in my hands and feet; strange tingling around the edges at first, then gone altogether. My gait became clumsy and my hands, never quite sure of what they were doing, started to fumble with things whose shapes I was certain they knew. I dropped knives and struggled with my shoelaces, and the concrete on the way to the train in the morning (by now I was home) started to feel different, soft and slack like that damn bed. I stomped as I walked, trying to prove to myself that I was taking the steps I thought I was.
As the days went by, my feet started to feel heavier, and my legs weaker. At first, stairs became difficult, then the step up to the bus, then curbs, then everything. I tried to run to catch a taxi one morning, and my knees buckled in the street. I tried to lift myself out of a patio chair in a friend’s yard, and I collapsed into the gravel. Little things pile up.
One doctor told me I was depressed and very quickly gave me a prescription for SSRIs. One found out that I was a vegetarian and suspected a B-vitamin deficiency. Blood work proved her wrong. Xrays showed no noticeable loss of bone density, and basic strength tests suggested that I wasn’t actually losing muscle. And yet I was getting weaker, and the numbness was spreading, creeping up my forearms, nestling between my ribs, spreading across my chest. With no news becoming bad news, I checked myself into Emergency (which felt like exactly the wrong thing to do; it was all too slow, not eventful enough, too mundane, too ordinary; “below the threshold of awareness and theorization”).
Some basic laying-on of hands and a few questions later, a kind doctor, staring down at her notes, said “it seems to point to MS, but you don’t fit the profile.” Not fitting came as some small comfort. Having edges that didn’t line up and curves that didn’t match was something to hold on to. It created a craggy surface full of little footholds and accidental handles. Now, so much of this seems to have been about fit and fitting ,and not; how a person fits or doesn’t, how a mattress holds their hips at night (or doesn’t), how a pillow cradles their neck (or doesn’t), how one’s blood composition and bone density and reflexes make sense (or don’t), how one’s foot hits the ground, how it trips or stumbles, how well it remembers (or doesn’t) the height of a step, the slope of a street, the weight of a body. When you hear something like “MS,” where you fit, how you fit, and if you fit–the question of what scaffolds hold you up and pin you together–becomes fraught. Fitting gets dragged kicking and screaming away from the ordinary.
“We’ll run some more tests.” An MRI first, then more xrays, then more blood work: nothing, nothing, and nothing. This apparently means it’s almost certainly neurological. Neurological conditions, you see (or more often, don’t), are hard to detect and diagnose because they primarily act on the way you feel. At least in their primary stages, they don’t often change the way you look, they don’t show up on the skin, and they don’t generally change what you excrete or in what volumes. If I can paraphrase Aaron Gordon’s brilliant writing on tasers, they’re conditions that get under your skin without breaking it. There’s no sores to wrap in gauze or wounds to suture closed. They’re hard to make sense of exactly because they mess up our ways of sensing and making sense. They comfortably inhabit the everyday because they look ordinary, but where they position themselves is exactly between you and your sense of what ordinary is, in what objects and practices and forms and movements you think it consists.
The last test they run is a spinal tap. They’re going looking for protein in my cerebrospinal fluid. Too much protein in your cerebrospinal fluid, apparently, means that something has gone awry with your nervous system (but oftentimes, by my doctor’s own admission, no one is quite sure exactly what). Leaned over a table, head buried in my hands, I feel the needle slip between two of my lower vertebrae. I begin to sweat immediately and profusely, less from the pain than from a kind of panic I wasn’t aware existed. Somewhere, a nerve is touched, and my right leg twitches slightly. Touch begins to lose touch with itself; a wild surplus of sense, and so little to make of it. This hand here feels like that needle there, this numbness here feels like that anxiety there, this weakness here feels like that intensity there.
Inside of a minute or so, it’s over. Only later do I learn that it often takes two or three punctures for doctors to get a usable CSF sample, which is a horrible thing to know, but anyway.
The sample is sent off somewhere for analysis and I am instructed to lie extremely still on my bed. The stillness is supposed to stop a person from developing migraines after the procedure; it helps promote the closure of the puncture site and prevents further CSF leakage. It’s the leakage that causes the migraines. The sudden drop in fluid pressure within the spinal column creates what my doctor calls, using a phrase I have since fallen in love with, a “gravitational tug” on the brain.
All these little tugs and touches, these ways of being nudged into and out of place, these little closures and openings, slippages and leaks–these ordinary, procedural parts of medical practice–they land in the body, this body, like buckshot. Getting under the skin without, or only occasionally, breaking it. All these ways of being entered and passed through and broken into and held together and stretched and patched up, they live inside and outside the everyday. The everyday is where we are effaced. Kathleen Stewart writes, “the ordinary registers intensities–regularly, intermittently, urgently, or as a slight shudder.”
The test confirms that I do not fit the profile. It is not MS, but rather a rare and poorly understood condition known as Guillain-Barré Syndrome. GBS takes root when your body mistakes its own nerve cells for an invading virus–usually some severe respiratory infection–and attacks the myelin sheath. In severe cases, it takes the form of an ascending paralysis. Beginning as a weakness in the lower limbs, it claws its way upward, eventually implicating the diaphragm. A ventilator will keep patients alive while the myelin inflammation recedes, but this recession can and often does take more than a year. Some die, not many. But those who do ultimately die of misrecognition, of confused cells, of antibodies whose anti- is not firmly enough anchored, whose anti- fits all too quickly. The anti- of the antibody is always already magnetized, always ready to do its destructive work in the name of preservation. But for reasons that we don’t yet understand, it interacts with the wrong fields, forms the wrong attractions and makes the wrong affiliations. It misrecognizes, it sees at an angle, and the body is where that unfortunate kind of seeing is played out as a paralyzing and sometimes fatal mistake.
As it turns out, I am not one of the severe cases. My breathing was never in danger, and though I was extremely weak for a time, I was never fully paralyzed. I am now mostly recovered. My muscle strength has returned and I can walk and run exactly as well as I used to. Which isn’t very well at all, actually. But around the edges, and often in conditions that are other-than ordinary–when I am under strain, when I am anxious, nervous, or otherwise unwell–the remnants of the condition return, and likely always will. My hands still tingle and my fingers sometimes go numb. Occasionally, when I smile, a band of nerves that stretches across the centre of my face wildly misfires; little traces to remind me that this body now lives in another kind of ordinary, that it is held up by a different kind of rigging; a rigging that rusts and creaks and shudders, but that works okay, in the end. When I feel the pavement under my feet, and some small nervous shock radiates up my leg, I remember that I am not walking alone, that I am being tugged on by little rogue antibodies and fluid imbalances, by the kind doctor who never took her eyes of her notes, by the friend who brought me water when my reluctance to stay still after my spinal tap proved the doctors right–too much motion will give you a migraine worse than almost anything you’ve felt.
In the film The Examined Life, disability activist Sunaura Taylor goes for a walk around San Francisco’s Mission district with philosopher Judith Butler. They speak at length about the social organization of bodies–what we think they can do, why we think they can do it, and how we arrange our worlds such that some bodily capacities are supported while others are frustrated. At one point, Butler remarks “nobody goes for a walk without having something that supports that walk, something outside of ourselves.” Because it always involves brushing up against other people, certain forms of socially acquired knowledge, and so many mundane interactions with an actual material world, to walk is to be reminded of all the ways in which one doesn’t walk as one. Now, for me, to walk is to be reminded of all the ordinary touches that organize and enable and constrain my walking, of all the ways I fit and all the ways I don’t, of all the little things–all the forms of composition and decomposition–that happen below Povinelli’s threshold of awareness: over eager antibodies, stiff joints, pills.
A year on, I am still frustrated and sometimes upset at my condition. I do not like it and am certain I will never grow to accept it or appreciate it and I don’t think I ought to. But I am in the world now in a way that I wasn’t, and I am learning from touch, and I am learning to touch, and I am learning to be supported and held together, and I am finding ways to care for this uneventful body, full of little things.