Movement

It took me a slow series of movements to get up from the carpet I had laid on, face smushed into its fibers, my chest flat against the soft hard surface. Sometimes you just gotta lay on the ground and think empty thoughts. My tailbone, sacral joint? or whatever bone is right above my butt crack, is in severe pain. I have nausea, gas, bladder inflammation, clitorodynia, constipation, pelvic floor dysfunction, hydronephrosis of the right kidney flank pain, probably all caused in some way by my untreated endometriosis. I've also been laying around or sitting a lot, because to stand is to be dizzy, to get a disastrous feeling in my entire body, to be in more pain, to feel my heart race at a standstill. I have multiple overlapping chronic illnesses that affect my autonomic systems and cause neuropathic type pain, although my actual nerves seem fine? It’s all in my head I suppose, misfiring signals from an overwhelmed brain. Don’t ever admit that to a doctor though, or I’ll be right back to all of this just being anxiety again. I spread my legs apart as wide as I can stretching my inner thighs. It's so hard to stretch the pelvic floor, as its inside in the center, but these series of movements are supposed to help? My butt and surrounding areas are sore to touch, not unusual as touching anywhere on my body feels like poking a bruise, but the muscles are especially tender and sore here. I take deep breaths as I lay stretched melting into the old carpet. My cat wanders around me craving understanding as to what on earth I'm doing. I don't know either, I'm just searching for relief. I keep my arm pressed to the ground and roll on my side lifting my other arm in the air, my armpits also always hurt. Rolling to switch to my other side brings a wave of nausea. I roll back onto my stomach. I hug a pillow and pull myself into a ball. My legs curled under me, my back bent forward, my head still towards the ground but the pillow keeping my chest open enough to breath comfortably. It lightly stretches that lower back area. I take deep breaths and hold them. My body is in so much pain, it always is, every muscle so tender, years of growing illness causing everything to just get worse. I move my back against the couch, lifting my head slowly so as not to cause my vision to black out or any nausea to swell in the back of my throat. I sit with my back straight and my feet against each other in a butterfly stretch. I remember back to my early childhood, barely memories of ballet class at the gymnastics center that I did for only a year or so. Even in early life I wasn't flexible. My body has always been so rigid and prone to pain, yet it wasn’t until I was 26 they finally took me seriously. Only once it became disabling. I lay the palms of my hands upwards relaxing my arms into my lap, the couch assisting my posture, usually crouched from soreness. I close my eyes and breathe slow. No amount of relaxation techniques ever relaxes my body. I move my legs in front of me and reach for my toes, a length I've never been able to close in all the years I've done this pose. I tap the front of my feet for mere seconds as my body rocks back and forth slowly for quick stretches. I want it to help my back but the pain in my legs is almost unbearable. I spread them open in a triangle and lean forward and to the sides. I stretch my arms and roll my head and neck before slowly lifting myself up onto the couch. After drinking some water I wait for my head to steady from the change in movement and posture. I know I cannot stand up yet. I know some of the advice I had gotten was to wear compression on my legs and to encourage blood circulation, I don’t have the socks and I don’t own the suggested exercise bike, so I try just waving my legs around in circular motions before trying to stand, wondering if this is at all helpful? I stand okay and knowingly stop after a few steps to lean on a chair steadily just in case as my vision changes. My cat beckons me to follow her as it is way past her bedtime. I’m doing this so I can try to sleep again, but she doesn’t understand. Have these efforts done anything? or will they merely just cause me pain tomorrow? I go upstairs for bed ready to lay on my acupuncture mat, my only other defense for the back pain is different pain. All this movement had relieved some gas including some trapped in my chest and I hope that is also good? I had already tried heat and cold, lidocaine ointments and internal suppositories. I couldn’t sleep last night because my back pain was too much, I need to get some tonight. My pelvic and lower back make walking and standing painful along with the new gravity from standing pooling blood away from my head. As I struggle to slowly walk up the stairs back to my bed I can’t help but listen to the intrusive thoughts. 

What if my suffering hasn't meant anything. My body, my trauma, the world. The continuous wreckage of my soul wears me thin. What use am I within the confines of capitalism? Outside of it, I am filled with goodness. What does good matter when it doesn't help you survive. What good is it to suffer in vain only to be told you are meaningless by the structure your life must live within. When there was room for survival and security, there was room for hope, that hope created action and care, but without any safety net my body is backed into a corner, under attack. How can I live, how can I continue within forces of indifference. We all suffer under invisible forces, weighing us down lower until I can no longer carry myself. My suffering is no fault of my own, and it is not of cosmic forces. There are treatments that could help me, there are doctors who could believe me, jobs that could have accommodated me, kindness I could have received. I did not choose this life, this body, and I did everything within my power to create my own luck, to show up to appointments, to research, to eat better, make the "right" choices, but I've been dealt a bad hand. What can I do now but suffer? What does suffering matter if that is all there is. I can feel my days turning into shadows. 

I lay in my bed not yet covering my overheated body with a blanket, my heart racing from the stairs. My cat climbs up and stands on my sore chest, her little paws like daggers, but she is purring so I don’t dare move her. 

My body feels less like it makes an imprint on my mattress anymore, and more so that my bed has started imprinting on me. My rest is not restful, my days not free.. even though you wouldn't be mistaken for thinking I have plenty of free time on my hands. The time is used poorly between fits of pain, confusion, and despair. Glimmers of energy used up to clean and take care of myself, some moments of fun yes, but these moments drain me. They say youth is the time to be alive, free, and have fun. Every pain I once tried to contain walled in my heart, locked in my soul, now bleeds out into my every nerve, to each cell and tissue, ligament of muscle, they all cry out in a silent scream, in this echoing pain I can't even condense into my mind anymore. It has become surreal, transcendent and all powerful. A fractal of kryptonite embedded into the dna. I must have some fraction of Superman's power to have lived through this pain and weakness for so long, for what strength you need to not fall apart. To have continued on normally for as long as I could, before every part of me began to break down, the slow cracking of glass under slowly growing pressure. The price of pain is pain, you get no choice in it. 

My life has always felt like a magnificent film playing out in a lonely theatre, a fantasy story that only I sat and watched, yet the real play began before the screen of a body disconnected now tasked to contort itself for an audience. To play the part of normal. This time not in the sense of my identity like when I was a child, but my ability. That I could dance the movements, sing my parts, memorize my lines, do the heavy lifting behind the scenes needed for the show to go on. I still sat isolated in the audience, in the spotlight of my own agony. But I did start to draw people in from outside, asking them to sit and watch, pleading with some for help. But no one could rewrite the story that had already been performed, no one could predict the text of an anonymous author or the mishaps that came from live performance, and no one, in a more real world sense, could fix my health. There would be no returning to normal, what once was shattered mirrors, broken glass, repaired hearts, story arcs and triumphs, epiphanies, it felt like my story had come to a sudden stop. The words no longer feeling the purpose to even be written only to head into a dead end. I felt no energy left in my body to even feel the overwhelming existential dread this caused. I was scared, I was trapped, I couldn't work a job, I could barely leave my house, I struggled to finish school and then fizzled out over the summer, medicine gave limited to no relief. New medicine gave hope and then took it away. I was even growing tired of hope. I didn't want hope, I wanted my life back. I wanted to stand on that stage instead of dreaming of it, better yet leave the theatre altogether and get out of my own head. I missed people, I missed the world, I missed mattering and having a purpose. I need a purpose because without one, do I matter? That was the growing fear behind it all, as I became a shadow of my own self, as I felt the world forgetting me. Did I matter? I used to think that the meaning of life and its purpose came from the love and goodness you could put out into the world, for embracing the miracle of existence within all the chaos meant something, and that the antithesis to chaos was creation and kindness. But if I only existed in this room, did I matter? The world could go on while I withered away in this room, but what would be the bother over just one person, one life crumbling to dust, while others danced. I can only face my own feelings, my own inner world and reality. I wish with every part of me that I could help them, help anyone, help myself. Is comparison how we decide what matters? Is this the trick to giving my devolving life purpose? Some special color and flavor to make me stand out against the other despair, so that mine matters in this system of ours? My pain that didn't matter when it was merely my emotions can matter now that it's pain in my every cell. But I'm still not disabled enough. When does my life begin to matter, when does my joy, my sadness, my reality, my dreams matter? When I was healthier, when I was young, when I was older, will it ever? Was there ever anything I could have done? Could I have done anything differently? I played the game all wrong it seems, made the wrong moves, took the wrong paths. My friendships drift apart, our sadness, our distance, and time severing the connections. There is no way to move other than forward, but I'm growing so tired of this story. I stare at the ceiling, the same ceiling since I was a child, covered in faded no longer glowing stars. I still can’t sleep.