My body has always been on my mind. Not necessarily its form or shape, but how it functions and feels. I am always managing pain, considering the activities I can do (or more often, cannot do), how much I can handle in a day, and when I need to rest. I have often spoken about the structure within me, usually in poetic asides, but I don’t think I have ever confronted my body. Never looked at myself in the mirror and really considered the way that I look, how I move, the way I hold myself, or how I am held.
I saw a reel where someone was highlighting the importance of spinal mobility, promoting ‘spinal waves’ as an exercise to increase one’s flexibility. The person in the video moved their back like a dolphin, the movement rippling through their body. I showed my partner and joked about how good it must feel to be able to move your back in such a way. And then it struck me that I did not have that control over my body. I physically cannot move my upper body. I cannot flex, twist, or arch. All of a sudden, I felt powerless in myself, as if my entire upper body was not my own and I was imprisoned within myself.
Another reel, this time of a bone museum discussing their ‘rarest’ artefacts. The first one to be shown was a spine and ribcage with severe scoliosis: the same curve as mine, the intense ‘S’. The woman smiled as she held up the bones, gesturing to the curve before moving on. My stomach dropped as I saw what once was a person, being paraded around for the ‘rarity’ of their condition. To alleviate my disgust, I turned to the comments: ‘LITERALLY that first spine made me straighten up so fast’, ‘Right…or else you may end up in the museum’, ‘Scoliosis is mostly genetic, don’t worry, you won’t ever get that bad’. Well… That sure helped!
The misinformation concerning idiopathic scoliosis is common, but the notion that if you have bad posture you will ‘get that bad’ and end up in a museum hurts. Before my diagnosis, people often commented on how good my posture was, how straight I sat up. There’s a joke there about a ‘before and after’, but I am not feeling particularly humourous. The video made me feel like a freak of nature, seeing the bones stripped down like that and the comments reacting viscerally to it. I thought of the many times I have shown people my x-rays and wondered if they ever felt disgusted by me; if they feared becoming me. Was this somehow my fault? I felt as if my moral fibre was distilled into my bent spine. That my younger self must have been so careless if their body has crippled under the weight of my negligence. It’s ironic because we don’t know what causes it. That’s what ‘idiopathic’ means. I scrolled away from the video aware of the weight of my spine bearing heavy on my back.
I have been dealt my fair share of jokes about stiffness. I remember the days after surgery where I would be sitting at my desk, glued in place, literally unable to move. The pain, and the uncomfortable feeling that there was something cold, hard, huge behind me, inside of me, held me in place. I felt like a tableaux, the gallery of statues in Sir Orfeo: fixed, poised, yet alive. My brother walked by, stopping to laugh at just how upright I was. From my perspective, I couldn’t tell how straight I looked but I felt the constraint, the forced position that I will never be able to give up. I have developed some more movement since then and have got used to the feeling. Well, I say that, but I am almost unable to describe it. It isn’t like standing with a book on your head, nor being held up by a string. While it is a supportive structure, it doesn’t feel like it is holding me up. And yet, here I am, taller than I was and impeccably straight with perfect posture. It feels as if there are many hands wrapping around my spine, squeezing and pulling me into position, burying me like cement. When at rest, I do not feel their presence; they retreat into a background hum. But when I try to take a deep breath, I feel the resistance between my shoulder blades, shooting down to my hips, the fistfuls of metal working against my living, breathing body, forcing it to be still.
I practice sighing, breathing out and slumping over, trying to reach a feeling of relaxation, only to realise that I haven’t moved at all and the feeling of relief never comes. I think about that video and wonder how good it must feel to stretch, to collapse at the end of the day into a sofa, your body almost a liquid dissolving into plush velour. Instead, I lean forward, sit up straight and uncomfortable, and wonder what it must feel like to physically relax, to not be all tense and rigid.
It was only in the beginning of my first relationship that I considered my body from an outside perspective, worrying about how I would be perceived, how attractive I looked. I remember that scene of Maddie in Euphoria, where she teaches herself how to be conventionally appealing to men in sex, practicing positions and contorting her body, all curves. I have angles. My right shoulder is too low, sticking out to the side and visible from the front. My hips are also unequal, one barely noticeable and the other the juts out, highlighting the protruding shoulder. When I examined myself, I was so worried that my naked body was unappealing, a contortion of the norm. I was scared my body would be unlovable.
Of course, none of that matters. My partner loves me and my body was never a topic of conversation or concern in our relationship. I quickly realised that the way I looked did not matter, adjustments could be made and my worth is not stored within my physical form.
After this, I quickly forgot about the way I looked, instead focussing on how my body functions, how I can manage pain, how I can strengthen myself. My love of baggy clothing also means I forget what I look like, the map of all my contours foreign. I think a reason why I am not concerned with my physical form is a way to ignore the fact that I do not have complete control over myself, how I look and how I move. My life will always be dictated by my titanium scaffolding, fused to all my vertebrae but two. Whenever I am reminded of this lack of control, I panic, scratching at my skin, trying to rescue my tired spine from its prison which also happens to be its saviour. I try to calm myself, remembering that this is what it’s going to be like until I die. I cannot change that, so there is no point working myself into a frenzy about it. I try to remind myself that this was necessary; that the metal is my friend, helping me, literally supporting me when my spine couldn’t. Again, I think of the second video and feel ashamed of my natural body, its intense failures. I know it’s not fair on myself, I know I am strong but I also wish that this never happened.
It feels somewhat sad that I spend so much time talking about my body and how it impacts my life, but most of the time, I am trying to ignore it, trying to pretend it’s not there: if I can’t see it, it can’t hurt me. It’s not that I reject my body. I am incredibly proud of my strength and my perseverance, but I do feel alienated from it, like it is not entirely mine. When I get home from a long day, lie down on my bed and take a deep breath, I am not relieved, but the pressure builds as my lungs become engorged until the pain in my upper vertebrae reach their peak and I hear a pop of my joints. The cracking of my bones does not feel good, even if it relieves pressure. There is a momentary release until the pain slithers its way back up, and the dull, yet deep ache that started after my surgery returns, enveloping me, pulling me down into the mattress. I want to cry, but I don’t, I go to sleep and it all repeats.
I often considered donating my body to science, but I am not sure I could. To be distilled to just my spine is not something I could ever bear. It would be ironic if all my life I tried to escape my bodily reality for it to be the only thing that persisted beyond my death. I think about being cremated, the bone melting away, leaving pools of mixed metals. I think about that metal being made into rings for my descendants, a reminder of me. Again, the notion that the metal within me will ultimately outlive me and become my legacy angers me.
So, it is easier for me to not look too long in the mirror, not run my fingers over bulging screws, to not think about my death, to live quietly alongside my back, managing what I can and letting go of what I cannot.