No One Writes About Agnes
Published in The Red Fez Magazine April 13, 2022
Gods damn it, Agnes. You’re like a black hole.
You’re a compressed darkness collapsed in on yourself.
I used to do telephone pole running to get through my really long, beastly brutal runs.
I’d just focus on moving from one telephone pole to another to another to another, just one pole at a time, one breath at a time, one stride at a time, one pavement strike at a time, lungs burning, legs moving of their own accord, holed up in the moment, soaked in the inexpressibility of the physical endeavor and the invisible geography of the moment.
This is what it’s like getting a complex diagnosis out of our medical system.
It’s an endurance event, except the beast inside is only quelled when someone higher up writes a letter taking you seriously.
Once the letter is written, though, people below have to take you seriously.
It's a rule.
Reading the letter is the same as knowing the secret password or secret handshake. Without the secret password, challenges get dismissed because of strengths and strengths get dismissed because of challenges.
But not you, Agnes. You compressed me into a ball of quiet, shrunk down so far into a pinpoint of dim light that I became the object of your medical care, rather than the subject of it.
I mean, Geezus, Agnes. I thought that the only thing I had to do as a patient was to tell nurses and doctors straight and clear about my symptoms.
I didn’t know how dangerous a poorly understood disease was.
I didn’t know there were unwritten rules.
I didn’t know that people use the word ‘research’ as a rhetorical shield or as a talisman.
I didn’t realize that the dispensation of utterly mundane information could be used as a substitute for actual medical advice.
I didn’t realize that I needed to bring a man with me to all of my medical encounters, not a woman, and especially not an older woman, because that infantilizes me.
I didn’t know that I would need to manifest my pain on the surface of this earth for you.
Mostly, though, I didn’t realize that it wouldn’t have mattered what words I said to you, and that there was nothing I could have done to not make you worse.
Here I am, now, seventeen years later, with a whole different diagnosis. After a decade of tolerating increasingly debilitating symptoms, after months of waiting for appointments, after a year and a half of testing, I’m finally headed to the specialist who can seal this deal up, and name what’s consuming my body, what’s making my tendon’s rupture and my muscle’s tear, what’s tremoring my entire body, what’s ruined my autonomic nervous system, what’s assaulting every system in my body, including my cardiac function, and still, I hear your words instead of my own.
The deadly game you played with my life was, in fact, its own game of tag. Somehow, you got offended enough to make me “it.”
To have my agency, my plea, pathologized is such a familiar feeling still.
Make your confessions now, woman, because I know logically that you’re nothing but a contradiction.
Still, I’d like to hear it.
I’d like to hear you try to argue that sound nursing and personal philosophies can account for you believing that wounds can be desired and also despised, that wounds grant power and also come at a cost, that you think suffering yields virtue and selfishness, that pain is the object of representation, and also, its product, that the kind of medicine you practice transcribes genuine suffering while neutralizing or naturalizing its symptoms, because how can I really mount a debate with you when all you said was, “You’re not even in that much pain.”
You made yourself personal and poisonous and doubtful, Agnes.
I needed IV Zofran and IV Dilaudid and SC Heparin from you. That’s all. I don’t know why I was the person apologizing, when you were the person with all of those teeth.
Pain is not a feeling, Agnes, because feelings have objects.
For example, in hindsight, I can feel angry with you for dismissing my humanity or I can feel happy with the look on your face as my husband emerged from the bathroom to intervene on my behalf, because anger and happiness are feelings, and feelings have objects, but pain is not “for” or “of” anything. It takes no object.
I can’t even talk about the pain I was in at the time without using metaphors or without using my hands to gesture, and that’s because pain doesn’t just resist language, it actively destroys it.
Listen, Agnes, on one side, there’s me as self, and on the other, there is me as biology. If we’re going to pretend that there are sides, that is.
I’ll fully admit these relationships are thoroughly preoccupying. That’s what happens when relationships are forced upon you, though, and one party is a shitty communicator, gives you nothing but pain stripped of reason, and yet holds most of the power.
That’s all I’m giving you, though, because living in a disintegrating body is what it feels like to live with a certainty that cannot be denied. Not even by you.
You were a life lesson, not unlike end table dusting, laundry folding, or toilet brushing. I’m just dandelion fluff easily blown off into the distance by anyone who hasn’t read the letter. I’m just saying this because it’s a bodily fact. You were a lesson in how my heart can be in my chest and in someone else’s hands simultaneously.
The thing is, Agnes, I know that you happened to me, and that I did not happen to you. I know that our meeting like we did is not a story that you need tell yourself until you can arrange the details in a way that makes sense. If you did, need to tell yourself a story about me, if you’d even remember me, I’d give you permission to lie about all of it, because I’m not sure you could survive it otherwise.
Just to set the record straight, in case there’s any confusion, I’m not a warrior. I’m not declaring war on anything or anyone or on my body parts or what’s left of them.
I am not something that I have to earn back and that’s what all war is for. The injury and suffering that war brings is not something that’s inadvertently made on the way to making something else, like a recovery or healing. It’s just for injury and suffering. That’s it.
I’m a person. I’m a person who is struggling, often, and who needs help sometimes.
My health is not a campaign or a battle or an adversary to overcome, Agnes.
There is nothing to destroy or to fight.
My body is a meaningful characterization of my being.
I don’t love all of the remaining parts of me all of the time, but it’s not honest to say they don’t go here. They are here. The parts of me causing pain are unlikely to move on, but no fucking way am I fighting myself in their name.
So, I’m going to have to let you go.
Before I burn this whole thing down, then burn the ashes, throw the ashes in the sea, and burn the sea, is there anything else you want to say to me before I never see or hear from you again?
I don’t hate you, Agnes. I just don’t have room for you.
Anyway, I’m sorry I kept you around this long, but I know who to blame.