86. There Are No Words for This But Here Are Mine

by Mary Krienke

I didn't feel up to the task of writing about my own relationship to pain because I felt in many ways I was in the process of my own becoming and that to try to "say something" about all of this would mean I should know something about what my pain has meant, what it means now, where I think it originated, if I have found a way to accept it.

Of course the answer is that there is not a stable site from which I can share these thoughts. We are always in the process of our own becoming and I suppose that liberated me enough to write this, which is next to nothing.

Vy is my closest friend, and I have been privy to many parts of her pain journey and yet I know I am on the other side of it. We have known each other for 17 years (I think?), and I had always prided myself on my strong hands, so if a friend was ever in pain, my hands were offered. I was a strong kid, for my size, for my gender. When my partner Sara and I moved to the city, 18 years ago, we slimmed down the belongings from our two-bedroom, Midwestern apartment to fit into a one-bedroom Hell's Kitchen railroad and lugged everything up three flights of stairs. Couch, desk, dressers, lamps, electronics, the contents of a full (small) moving truck, which we drove cross-country together. Two years later, after my M.F.A. coursework was done, we again packed up our belongings to be picked up by actual movers, and just that had me icing my body for days.

I could not fathom carrying a piece of furniture up a flight of stairs anymore. My body was not the same body that first came to New York. This was not the first time I found my body changed, suddenly uncooperative. And it certainly wouldn't be the last.

In high school, I ran long distance and my body was agile pre-puberty but post-puberty, my dimensions felt monstrous to me, I felt like I was carrying a newborn calf around my hips. With each step, my gait click, click, clicked, a tenderness aching, radiating, consuming the entire experience of being in my body. If it hadn't affected my running, I probably would have kept it to myself, but I was slowed and I could not see a path ahead in which I voluntarily injured myself to come in near-last in races I used to be at least competitive in previously. This is all to say, there was no prestige in being a loser, so I would be suffering for nothing.

My mom took me to the doctor. I said, "My hips hurt when I run." He said, "Only when you run?" I said: "Yes." He said, "Well, stop running!"

Maybe he wasn't that far off: DON'T DO THE THING THAT HURTS YOU. The problem was my body wanted to do that thing; it was a thing I had done and loved; running was a freeing, liberatory experience, where my mind calmed and I felt grounded in my body. Quieting my brain and connecting that brain to the larger system it was a part of were not incidental things I liked or wanted, they were necessary for my continued existence.

Shockingly, at least to me, my relationship to my body was never the same. This isn't to be overdramatic; it is simply the truth. I developed a near dysmorphic relationship to my legs. I thought they looked like stumps, they felt like stumps, I hated them, they disgusted me. When I looked at my legs, I saw weakness, dysfunction. I saw all the ways in which I allowed myself to be immobilized by my own fear of asking for help, of finding someone who would help me adjust to my new body, someone who might help me address the pain that had taken up residence there.

I still curse my legs and then I apologize to them. And I thank them for all they have done for me, all they have put up with.

It is part of my origin story of pain — but it is all the way at the beginning and I am many chapters beyond it, where chronic neck/shoulder/back/arm/wrist/elbow pain (a long line stretching from psoas to skull) joins the story, neck pain severe enough it inhibited my breathing, weeks I wore heat patches and covered my neck in scarves to hide them, so much rolling, breath work, massage balls, constructive rest, mind-bending hours staring into nothingness contemplating how I would ever be able to work, "properly," ever again. (And of course this was my chief concern, my identity bound up in the efficiency and quantity of my output.) And let us not forget the horrors of my period, the true star of the show, jumping in when least expected to fuck shit up: something Vy and I have bonded over. True possession.

During long stretches of pain and their attendant hyper-contemplation, it dawned on me that I probably had one or two truly good days a month sandwiched between menstrual cramps, recovery from menstrual cramps, ovulation pain, and recovery from ovulation pain. But those two good days felt like my body being gilded, being crowned a god. I felt: holy shit, I need to be a DANCER!

And then another crash, always another crash.

I struggled, after watching Vy's pain journey, and Sara's, to communicate what was happening to me, but they both knew all too well. I needn't put it into words. They are both excellent interpreters of body language of which there was plenty. The three of us massaging various parts of our bodies while we talked about sawing various appendages off, of dragging our ghostbodies around with us.

WhatsApp message from Mary about ghostbodies.
A WhatsApp post written by Mary and titled by Anji, a mission statement that is a sort of groupthink, summarizing our experiences of misability, of our ghostbodies, challenging the assumption that a life with chronic pain is an ontological impossibility.

"Post-Ghost School of Thought: Where Thinking Goes to Die and Yet Lives On After Death. Some say we have bodies that are failing us, but we at the Post-Ghost School of Thought know we are already dead. But what are these encasements we seem to be carrying around with us? We were promised wispy tails or heavy chains with which to make a racket and spook the fuck out of people who have wronged us. We have been promised to be either tethered to the location of our death or to be free to traverse the world without impediment. Instead, we experience a perversion of this. We are asked to leave when we want to stay and asked to stay when we want to leave. And the leaving is not as simple as summoning the thought to move, it is a humbling, lumbering thing to pick ourselves up from one spot and move to another. We do not see the world from above with clarity; rather we are looking through a film into a world that is dying if not dead already and do not have the wisdom to know who has joined us on the other side, or rather who has been stuck on this side with us, tethered to a withered body that passes for a body. We have our suspicions. Sometimes, we even might have a knowing. Maybe through this veil of post-death, we do have a cunning, though it is fleeting and easily distracted. My body may be withered, but my fingers can type even if they can do nothing else. It is of the utmost importance in this realm to fool the living with our ability to produce words, to accumulate them and arrange them, to hit buttons that send these accumulations to others for them to decide whether we are living or dead. For now, my fingers, and the brainstem they are directly connected with, are powered with dreams of severed limbs, lye, and sexual obscenities. Soon, their power will dim, my hands will cramp, and whatever thoughts have been rattling around in this false skull will come to a full stop. But we push on through film and dust and fatigue and fleshy bodies on top of our fatigue. We push forward to see where our thoughts go to die. If they morph, become their own monsters" (M. Krienke, personal communication, October 8, 2021).

And yet, it is still infinitely harder to write about Vy or Sara's pain than my own, because I either want to situate myself in it — as helper, enabler, or a failure: wasn't there more I could have done? Or I think about what any of their most isolating moments must have felt like, and I am overcome. With grief, love, gratitude, shock that they survived, that they exist in these bodies separate from mine. And really, I just lose words. There are no words. And so I read theirs and rejoice.

I don't mean to deify Vy and Sara, but in their own distinct and separate ways, they are doing the work of saving people from misperceptions of pain, of what people in pain can look like, what we can do, what we are worth, what we deserve.

(– 117. The Review That Proves Me Right)