Recalculating my body and my pain
My therapist tells me that when you picture your body in your mind’s eye, everything is not of equal size. The average person will picture their head as much bigger than it is because they spend much more time thinking about their head than the rest of their body.
My perception of my body is recalculated every morning. If my left shoulder feels bigger than my right, I think that somehow everyone can see this. I can’t imagine anyone looking at me and not sensing the swelling and burning I feel inside or not being disgusted by the arched-over shape my body has taken. But, in reality, I look the same as I would if I didn’t have a chronic illness.
If I don’t have my shoulders or my hands taped up, I don’t feel I have the right to ask for a seat on the subway. I’ll get off the train and wait for one to come where I can see a vacant seat. I am late to class; I don’t have enough water since I wasn’t expecting to be on the train this long. I can only carry so much at one time, there is no way I could fill my bottle all the way up and carry it all the way to school. Needing to sit down has thrown off my perfectly calculated sustenance for the ride.
I feel like I am the one who needs to vacate and find another space, not that the spaces around me need to learn to be accommodating. I am scared to ask someone for a seat, I don’t like asking people to carry things for me, although I’m sure they don’t mind. I am stuck in a mindset of “I’m young, this shouldn’t be happening to me, asking for help is giving in.” If I don’t give in, it is not real, I am not sick, I will wake up one day and this will all be over. Since I look like a healthy and active young adult, it’s easy to occupy the persona that I am given by the gaze of strangers. The girl they see looks like she could run for miles, like she could run away and find a place of her own. I wish I could.
I go to a bookstore and, for the first time ever, I see a section on Disability Studies. There is a spot on the shelf for the writing that I have not yet been able to produce; a spot for the people who have expressed what I still find inexpressible.
I pick up a copy of Sonya Huber’s Pain Woman Takes Your Keys, and Other Essays from a Nervous System, go to a coffee shop down the street, and start reading. The cake I ordered comes on a plate that is too heavy for me to carry, the chair I sit in is not high enough and the table isn’t at an angle where I can use it to help me hold the book up. I am upset, but I’m also ecstatic because I feel more seen than I have in a long time.
What you mean is, “There is a secret door we all must enter, and I am entering it, and it is painted in luminescent colors that I am drawn to describe but I cannot.” What you might mean is, “I am less afraid to die because I am dying.”
Sonya Huber speaks to me from what she calls the kingdom of the sick. She tells me that I am not the only one beginning a journey into this domain. There is a place here, and I will slowly allow my body to be in it.
