Written by Laura Randall

I was home from university on Christmas break, lying in bed, staring at the ceiling. It was time to face the facts. I was burnt out. As a dyslexic person trying to keep on top of the workload, the many sleepless nights and extra hours of work were taking their toll. The information on switching to a part-time course sat on my desk. There was a decision to be made. Deep down I knew it was what I needed. But it meant letting go of the expectations I had held for the timeline of graduating. Before my eyes, three years was stretching into six.

I found myself reflecting on my journey with scoliosis. I thought back to being 13 years old, getting my first body brace fitted. It was completely custom-made and unique. They moulded the plaster cast around my body and placed the pressure pads exactly where the curves were in my spine. The brace fits only the person it’s moulded to. And when the person outgrows it, they need a new one fitted. I couldn’t help thinking that life, like my body brace, was not a one-size-fits-all.

I spent a year in the brace. With an S-shaped curve at 56 and 76 degrees, I had already been told I was just biding time until I had grown a bit more and could have spinal fusion surgery. It was a year of sometimes feeling like I was trapped in a cage, and sometimes feeling like I was a warrior wearing armour. At age 14 I got the go-ahead to have spinal fusion surgery, and I ended up having the additional costoplasty as well due to the rotation of my rib cage. Having major spinal surgery was not easy and not pretty, but well worth it in the long run.

Right from the start I knew I didn’t want scoliosis to hold me back from having adventures. But it didn’t come without making some adjustments. Before my surgery I had already committed to doing the Bronze Duke of Edinburgh’s Award, and I was for sure going to see it through. Due to the recovery time, I did have to wait a year, and I did have to take recovery seriously. During the surgery the muscles in the back get torn, so I had to build up the strength in my back to support the fusion. I did also have the heavy backpack following along in a minivan. But I hiked and camped through the mud and thunderstorm along with everyone else. I did it, but I had to make some adjustments.

A couple of years later I wanted to challenge myself to take part in National Citizen Service. The main reason being that I had found the whole scoliosis journey quite isolating. Being a teenage girl navigating the social world of secondary school can be challenging at the best of times. But add in chronic pain and swapping social outings for doctors’ and physio appointments, and you’ve got yourself a recipe for potential loneliness. The National Citizen Service programme involved throwing myself into a group of complete strangers for three weeks, with two of those weeks being away from home. I remember feeling scared but knew I had to do it.

The problem was that one of those weeks involved a series of physical challenges, some of which weren’t safe for spinal fusion. So, like she had for DofE, my mum spent more hours on the phone, getting the adjustments in place that would be needed in order for me to go. I ended up swapping the activities that could place strain on the fusion for ones that were safe. So I hiked up mountains and went kayaking instead. It also meant that I got to switch around groups as well, in turn meeting even more people and making more friends than if I had stayed in the same group the whole time. The adjustments, inadvertently, had made the experience even better than if I hadn’t needed them in the first place.

Remembering these experiences influenced my decision about university. I took the offer to go back on a part-time basis. I took the offer of making an adjustment, even if it didn’t fit the ‘norm’. I still graduated with a first-class degree. I just needed reminding that life is not a one-size-fits-all, and I am a fighter, with metal in my back.

Today it can almost be easy to forget that I’ve had spinal fusion surgery. I went from living in chronic pain to a now pain-free life. But I do want to keep reminding myself. The metal rods and screws are still in there. The scar is still there. I still can’t bend my spine. These things haven’t changed. I want the experiences to influence the way I think and the decisions I make today. My body was always compensating and adjusting, like putting in two curves to try and balance each other out. If my body can respond flexibly like that, I’m trying more and more to train my brain to think flexibly too.

So don’t be ashamed if your life looks a little different to others, or if you don’t fit a certain mould. The brace moulds around you, not the other way around.