Hot water rolled down my spine, dripped off my face. I was bent over my plastic chair, fingers gripping the handles, back parallel to the ground, losing consciousness in the steam of the shower.
***
I often find myself stuck in uncomfortable positions. I face a conundrum: it would cause more pain to move than it would to stay—and I wouldn't be guaranteed a comfortable position were I to move anyhow. So I remain.
And the specific circumstance is awfully reminiscent of my earlier years. Back in high school, when I relied solely on the occasional acetaminophen to soothe my pain, I would find myself lost in the shower. The water heater was as old as the house—sixty-some years—and probably was showing the same cracks the walls did. But I would turn the hot water all the way up, and gradually, as my aching body grew acclimated to the increasing heat, the cold water all the way down. I would lean against the side of the shower, unable to stand upright, the ambient heat pulsing through my tense muscles, momentarily letting go of the fear of the very visible mold under the caulking, or the fist-sized spiders that occasionally showed their faces on the ceiling.
And I would lose myself. Unable to move.
Eventually my knees would protest in pain, or I would find my back too weak to stay where I was—and I would sit down on the bath tub bottom, undoubtedly cleaned no less than two months previous—or just shut off the shower, so fucking what I only had the energy to wash my hair, everyone will just have to deal with my merely rinsed-off body for the next week, until I find the strength to step back in.
It hasn't been that bad since I began actively treating my condition. Shower frequency is, pitifully, a rather accurate measure of health in my case; I find myself able to soap up two or three times a week now, rather than my previous two or three times a month. And while I normally feel some weakness and trembling after my shower, I am normally able to get through my scrubbing routine unimpeded.
***
I have a relatively complicated relationship with my body. I suspect the same of many pwd.
I inevitably find myself attributing agency to my body wholly separate from the mind: the squishy, palpable lump of physical stuff versus the spiritual, incorporeal being. Whatever it is that "I" am, as a person, exists in the latter, and resides in the former. I am my mind, stuck in my body.
This is not so much a rational theory, but it is a rational reaction. When you struggle, day by day, to complete routine, rudimentary tasks, and the solitary obstacle is your own physical body—you may find yourself facing that same mind/body split.
You cannot turn over in bed at night; you hurt too much to so much as shift your arm, which is in searing pain in its current position. You are due for your medication, but it lies beyond arm's length, and you are so sapped of strength you cannot muster the power to force your tired bones into such a position as to reach the bottle. You find yourself trembling and unable to stand, and therefore unable to put together a small and simple meal to feed yourself. Depending on your condition, you may find it even more difficult to muster the appetite.
It hits at the heart of the concept of privilege, doesn't it? Most don't even have medication to take, much less having to break down all the little steps involved in taking it, and think over each one, and how to overcome one's limitations to achieve it. That even ignores other forms of treatment, from acupuncture to physical therapy. As glurgy as spoon theory is, Christine nails the dilemma when she says:
... everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. [emphasis mine]
It's hard not to feel that you are constantly fighting your body when every breath, every step is a struggle.
And so I've thought for years now: ever since I came to the slow realization that I was not normal, that none of the other children felt the routine pain I felt, day by day, that there was a reason I was having trouble keeping up with my peers in phys ed. That moment, when that elusive concept first became obvious to me—though I continued to struggle with my former delusion, day by day—that was the day I learned to hate my body. That was the day I came to know my body as the enemy.
After all, I still existed in there, somewhere—all the same thoughts, hopes, feelings, fears, and dreams of that blossoming young child that had been there yesterday—but I suddenly became aware that my body was not working with me in those things. And it never had been.
And so it became my adversary.
When I first began receiving failing grades on my high school progress reports, shattering my former 4.0 record: my body was my adversary.
When fell so behind in school after a particularly awful flare-up that I was still making up tests on the day before my graduation ceremony: my body was my adversary.
When I had to drop out of college only six weeks after I'd begun, because I had so overworked myself that I was bedridden for weeks, and housebound for months afterward: my body was my adversary.
When I had to drop out of college two years later, having successfully completed fifteen of the forty-five units I'd attempted, not in so bad a physical state but knowing I soon would be if I continued: my body was my adversary.
It has been a consistent theme throughout my short life. No matter what I seek to do—even when it's something that will make my physical self better on the whole—I must consider how my body will prevent me from doing that, and, if possible, how to overcome it.
***
My eyes found a vague reflection in a splash of water on the floor. I was breathing heavily. Stuck. I stared at the wavering reflection, cream and grey on white, and searched out the shadow of my eyes, while a similarly blurry thought formed in my mind.
My body isn't the enemy, I realized.
It's not my physical self that creates all my problems.
It's all the external expectations of it.
Disability isn't the result of individual defects, deviations from the able-bodied norm. Disability is the result of a society that fails to accommodate these differences.
What if we saw these differences as variation, not deviation? After all, we fully expect our children to be born with any number of different eye colors. Why is it any less when it comes to physical and mental abilities?
Can you shape a world in your mind where there is no norm? What does it look like? How does it differ from the world you live in today? What do you expect of people as a whole in order to support those currently disadvantaged?
The more I think, the more confused I become. It seems impossible to structure society so that everyone is brought to a similar level of ability across the board. But it does seem possible to structure society so that those fully-abled work to make up for those straightforwardly lacking, and everyone works with each other in full expectation of a wide range of ability across the populace, and all of this is seen not as hassling and burdensome, noble and heroic when someone takes it on—but as mundane, everyday, simply expected, no different from separating out your recyclables or driving on the right side of the road: something that everybody does, because it isn't that hard to do, and it benefits yourself as well as those around you, so it's stupid and even outright reprehensible not to.
That is the world I want to live in.
For now, maybe I can make peace with my body. Maybe I can come to understand that my body is not working against me, but that I—the singular person, from cerebellum to nerve ending—am simply working against a set of expectations that are stacked against me from the beginning.
