The growth-hormone injections I had to have every night before bed from age eight to ten did not make me grow as everyone hoped. They simply made my spine twist more and more in an S-shape. If they did not stop the nightly needles and fix my spine, it would have twisted so bad it would have punctured my lungs and made me dependent on a wheelchair. ‘We could make you spine perfectly straight.’ The doctor tells me. ‘But it would kill you. So we just need to make your rebel spine as straight as is possible.’
The first time I hallucinate before a major operation I am thirteen years old. A nurse gives me something to drink as I stand on my hospital bed and my mother ties up the back of my gown. I remember thinking: why she is doing that, as my operations are focused on my spine. The surgeons will have to waste time untying them so as to get at me and slice me open. As soon as I swallow the medicine I feel wobbly in the knees and lay down. I am not scared anymore though. My heart has stopped hammering in my chest. When my father asks the doctor if he can watch the surgery, I laugh. He isn’t a doctor. I giggle.
My mother freaks out when my eyes roll back into my head and so my father comes with me as I am wheeled down the hospital corridors for what will be the first of two major operations. I am so excited by what I can see and try to explain it to my Dad. ;Can you see them?; I ask him. ‘Can you see these beautiful golden spiders spinning the most intricate webs across the ceiling?’ My father squeezes my hand. ‘Yes.’ He says. ‘They are so pretty’
In that operation they actually went through my chest cavity to get to my spine and fuse it to stop it twisting in an attempt to outgrow me. They remove my lungs in order to do this. The surgeon says that when they replaced my lungs to where they were meant to be they puffed up ‘like beautiful pink cauliflowers.’
My mother stays by my hospital bed for the entire month that I am in there. She sleeps across two chairs. There are four other children of hers at home, a three-hour drive away. It is because of this that I think my relationship with my siblings is so fraught. I really did monopolise a great deal of parent-time despite it not being a choice I made. They formed a bond without me over all that time I spent away from home and waiting in waiting rooms at The Royal Children’s Hospital. It was unavoidable. I can still see my youngest sister at three years old peering over the edge of my hospital bed and staring at me with my halo traction. All I wanted to do was sit up and hug her.
While all the other girls in my Year Eight class were getting their period I was getting fitted for a back brace that I had to wear for three months after going home. In summer. I had to wear a tight back brace with fur-lined straps that went under my arm pits whilst living through a rural Northern Victoria summer. Some would argue that getting your period is worse as it is for far longer than three months and happens on the regular until you are old. It’s not a competition. In saying that it sure would have been easier to fit in going back to school had I started menstruating like every other girl, rather than spending ages in hospital having my body cut open and metal rods put on either side of my spine and bolted in place.
The surgeon said my spine was the most badly twisted he had ever seen. I am still proud of that. You just cant bring that up when you have nobody to talk to at lunchtime because your experiences on the traumatic side have made you weird and hard to relate to.
When I did go back to school I spent lunchtimes wandering around on my own with my newly minted bionic spine, too insecure and lonely to even comprehend how cool it was that I had metal rods and bolts inside me and this basically made me a tough little mother-flipper. Did anyone else in my class have 99 stitches down their spine? Not in this tiny country school.
At home I was not good at resting as I was meant to. I was the oldest of five kids on a farm. Someone had to vacuum and clean up after everyone. I can remember getting shouted at by my parents when they came home from the dairy one evening and caught me vacuuming the living room while still in my back brace. Oh yes, that is how I rebelled.
When I am told I no longer need to wear the tight, tailor-made back brace that made me sweat and itch and breath less easily, it is a good day. It hangs around the house like a weird ugly exoskeleton until it’s cold enough to have bonfires. The first bonfire of the season is a brilliant one. We burn so much rubbish and huge bits of fallen tree branches. My father asks me if I would like to throw my back brace onto the flames that are reaching so high into the perfect night sky. I nod and it’s in my hands a few moments before I thrust it with all my might right into the hottest looking part of the giant fire. It is consumed by the flames in seconds. I stand there watching it burn as the clear night sky, spattered with stars, watches over me.
Jessica Knight is a writer based in Melbourne with more back bone than you.