my body, my enemy

shortly after returning home from the beach, once the rash and inflammation have gone down some, my skin starts resembling moon craters. the blemishes are contained to the tops of my thighs and the three-inch sliver of stomach left exposed between my rash guard and swimsuit bottoms, spots where sweat and ocean water diminished the protection of my fancy European sunscreen. since these areas of my body are usually covered by clothes, i've never had to deal with this. 

though the craters are peeling, they're not easily peelable the way they are when they’re in their usual location of my inner elbow (coincidentally, the primarily locale of my frequent childhood eczema breakouts), where there's often enough give that i can pinch and pull at them, beginning the arduous process of returning my damaged skin to baseline. but on my thighs and stomach, the craters just want to make themselves known. they just want to pop in to remind me that right when i think i've discovered the extent of my body's oddities, there's a bonus prize waiting to be revealed. 

the first time i experienced the effects of my chronic polymorphous light eruption (or as i tell people for the sake of simplicity, a sun allergy), i was in the eighth grade and had just come back from an outdoor field trip whose exact setting i can't really remember. i showed the rash to my mom, a nurse who mercifully puts up with me treating her like my personal webmd, but she didn't have a ready-made answer. she feared poison ivy, except i didn't really touch any plants, and as i came to find out, none of my classmates were affected. that night, we dabbed the rash with a washcloth soaked in milk to soothe it, which was a massive blunder considering the dairy allergy that we wrongly assumed i had outgrown like my doctors always assured us i would (i have distinct memories of telling people "i'm not allergic to milk, i just don't like how it makes my throat feel" while actively avoiding ingesting it).

weeks later, when summer break waned and i attended my first marching band camp, the difficulty of lumbering around the sizable mallet percussion instrument i was learning to play afforded me the privilege of being inside for all but the tail end, when we had a preview performance for our families. the few hours i did spend outside left me once again covered in tiny, itchy bumps that i was told not to scratch but nonetheless did, causing them to grow into welts. they soon leaked pus that dried into a layer of yellow-tinged crust, and as a result, i walked into my first day of high school clad in a long-sleeved sweater, struggling through the heat that was par for the course for early august in tennessee. 

the alternative would've been facing stares and questions and ridicule, none of which i would have handled well at that age or even now, for that matter. that being said, i'm usually fine talking about my conditions because in most cases, they don't present on the outside. it's not ideal if my hips hurt so bad it's hard to walk or my throat starts closing in the beginning stages of anaphylaxis while i'm at lunch with friends, but no stranger walking by would think i'm any different. i like having control of the telling, especially since i have such little control of the feeling. 

which brings me to my complicated relationship with the word "disabled." it's not a dirty word, and i don't fully prescribe to the idea that we should use person-first language or terms like "differently abled" to make pretend progress toward equality. much like the word "fat," which can also describe me despite my similarly complicated feelings about it (which will warrant its own dedicated essay when i’m ready to confront the topic), the derogatory connotation is being reclaimed by community members. but how can i rightfully reclaim something so tenuous, so easily invalidated? 

being in a wheelchair, having a limb difference, requiring a canister of oxygen—these are the sorts of disabilities that, regardless of what else goes on in people's minds when they see them, are recognized as truly disabling. i, on the other hand, get the unearned privilege of blending in, and it feels as penance, i have to keep out the way of "real" disabled people. still, i can't act like this is a purely altruistic pursuit. 

the idea of being known as fat, disabled, and Black spawns a mix of anxiety, scorn, and a third emotion i struggle to name. anxiety because it feels a bit "three strikes and you're out" to me, like these are all attributes that could individually make me difficult to love but in combination preclude me from it altogether; scorn because of how limited a scope it is into my personhood—it doesn't take into account that i'm highly opinionated, a hopeless romantic, afraid of bugs, an avid audiobook listener, et cetera, et cetera; and the third emotion because how the world treats people with these characteristics is so massively above and beyond me that any reaction i might have seems insignificant in the face of it. 

disability and accessibility are so often only considerations for those it has the heaviest hand on, but for those of us silently and invisibly living under its pressure, it's difficult to not operate with a constant fear that in order to receive needed accommodation, we'll have to plead our case to people who may not believe us based on how we look. a lot of the time, it's easier to not even bother.

i hear a lot that i should focus on what my body can do as opposed to what it can't, but there are days where this is an impossible task. it feels like lying to myself, and besides, the scope of what it "can do" could change at any moment, as is the case with everyone. all it would take is one illness or accident, yet most people don't take this into account as they walk through the world. and who could blame them? 

it'd be nice if reality matched up with our expectation that the bodies we occupy now, provided that they are abled and aesthetically pleasing to a degree that we're satisfied with, will always remain so, and if we're not satisfied with these things, there's comfort in the potential for change. but we never consider that that change could look like losing functionality of a component of our bodies we've always taken for granted. 

with how many times i’ve had to go to the doctor about a new issue or had one discovered during a routine visit, it’s hard not to live in a constant state of unease. how can i not trust something so integral to who i am, but how can i trust something that’s let me down so many times before?