Are you bored of me yet?

Well, are you?

Do you see my name pop up on your timeline and roll your eyes? Do you ask yourself, ‘What more could they possibly have to say? Move on! Speak about something else?’. Are you sick of hearing my words, the repeated “(Dis)abled” burned into your retinas? Do you think that I am dramatic, making a big deal out of nothing? Do you wish that I would just go away? I wonder if that is what you ask yourself. I wonder what you think of me, my words, and my back.

When I was sixteen, a boy at school complained to me about how I made my scoliosis my entire personality. At the time, I was stung and deeply embarrassed that I was perceived that way. It felt like such a blow, that I was this one-dimensional person that lacked any depth beyond their health condition. I knew I talked about it, but was it really that much? I suddenly became self-conscious and aware of how I was being perceived by my peers.

Looking back, I was definitely an annoying teen, but that boy was a total prick. I was going through a medical emergency and one of the most difficult periods of my life, and apparently, that was not allowed to be a big part of my life. I realised that to be cool, I had to be mysterious and pander to the people who surrounded me, and my back was not included in those boxes.

While I often cringe about my past self’s actions and the jokes I made about myself, I feel a need to protect that person, to hold them tight and tell them that it is going to be alright, to quell the deep fears about the future. After my diagnosis, my world had been upturned, to be cliché. After initially being told by my GP that I would need to see a chiropractor and maybe, in a severe case, get a back brace, I walked out of the Bristol Children’s Hospital being told I needed immediate surgery to correct my severe scoliosis. I was told a brace would do nothing. I cried and cried and cried.

The sheer shock of one moment believing myself to be “fine” and the next being faced with the biggest decision of my entire life was crippling. It consumed me immediately, of course it would. It was all I thought about and currently think about. I suddenly had this new part of myself to deal with and had no clue as to how to integrate it into my life and identity. I never really knew how. I look back now and realise that I tried to cope through the self-deprecating humour. I lived as a caricature of myself, avoiding reality in the days approaching my surgery. Two days before I went under the knife, a teacher asked me how I was feeling; I replied that I hadn’t really thought about it–only then in that classroom did I start considering the reality of surgery. I started to feel sick, my guts twisting and contorting and so I pretended that it would be fine, it would happen and I would be fine. I ignored it all, like normal.

But reality has a way of finding you. For me, it was when I was being wheeled into theatre. In the lift going up, time seemed to stop and everything went silent for the first time. The adrenaline from the early morning, form signing, and tests wore away and I suddenly realised that this was it, I was trapped, there was no way out, of this lift and out of this hospital. I had evaded thinking about it for so long that months of panic built up and I could do nothing. I was paralysed (quite literally from the initial anaesthetic). It was then when I cried, it was simply all I could do.

I had been stoic up to that point, trying to view it nonchalantly because I realised that it was going to happen no matter what so there was no point thinking about it. I had phoned my older brother after my diagnosis and asked what he thought about it. I sat on the bathroom mat and tried not to cry as he told me that there was no choice: I had to have the surgery. So, that was that and I decided that there was no point thinking about it anymore.

By the way, that’s not how processing emotions and events works, as I found out too late in that lift.

And as I cried, time started back up again, and I was being wheeled out of the lift, down a corridor and into surgery. Voices asked me whether I wanted to be distracted from the milky liquid being pumped into my arm and I couldn’t respond. It was too much and I couldn’t do it. I was losing consciousness quick and didn’t want it. I wanted to go home. I struggled to tell my Mum that I loved her. Apparently, I didn’t manage to.

When I look back, I wonder if I would have handled it differently, but I know that even if it happened to me now, I still wouldn’t be ready for it.

After all this time, after everything that had happened, I still worry about what others think of me. In the years after surgery, I stopped talking about it, making references to my bad back when necessary. I have never spoken about my emotions surrounding my surgery or how it impacted me: I have tried to run away from the past, leaving it to be buried in the dust.

On one hand, I don’t ever want to think about it. About how hard it was to go through that as a young teen. But I also think that I tried, and try, to minimise myself, seem smaller, as if I had gotten over it, as if it didn’t matter to me anymore, didn’t even cross my mind. I want to appear strong, stoic, as if I am so much more, as if I conquered my own body. Obviously, that’s not true.

At university, I started to struggle a lot with my body. The stress of Oxford coupled with inaccessible buildings and streets really got to me and so I started to write about it. While I find this therapeutic, it also brings me intense anxiety. What will people think of me? How will their opinion of me change? Do people even care or am I just taking up unnecessary space? Do I get the right to talk about this in this way? Is my body valid? I understand that it is a balancing act: I open myself up to others and so have to accept the responses. But I am not sure if I can handle it, handle so many people knowing these things about me: how long the shadows of these articles will follow me for? Will I look back on my university self as I do my teenage self and cringe?

Every time I write I think about that boy at school and it almost stops me from writing. Coupled with an anxiety of my writing (thank you first year tutors!) and being self-conscious of how ‘disabled’ I am, this all feels like a recipe for disaster.

While I write for myself, I cannot help but wonder what impact I have on the world, and I understand that you are probably not thinking nasty things about me as you read this. Maybe you see some of yourself in me, or maybe this is a new perspective you have never considered. In writing, I am learning to come to love myself and to stop apologising for existing with a disability. Funnily enough, it is one of the biggest things in my life and I will continue to speak about it as I see fit.

I look back to the boy at school and I laugh because of how stupid his comment was and how I will no longer let it have any more power over me and my actions.