Bend me, Shape me

scoliosis before and after

left – before surgery x-ray, July 2005
right – after surgery x-ray, September 2005

This time eight years ago, I was in hospital. In the Spring of 2001, I was diagnosed with adolescent idiopathic scoliosis. Until my Mum and I were mucking around at home one day, causing me to bend over and her to notice that something really wasn’t right with my back, my teenage life had been ticking along in a fairly standard way. However, once our GP confirmed Mum’s suspicions and referred me to a specialist – who delivered the news that yes, my spine was curved and no, nobody knew why or whether it would get worse and that yes, I’d possibly need surgery in the future – my life changed.

I dreaded my appointment every six months, hoping for good news but expecting bad. I was fitted for a brace and instructed to wear it 16 hours per day – quickly becoming possibly the only 14 year old desperate to go to and stay in school, because home meant brace on and brace on meant discomfort. We still have it somewhere: during the two years I had to wear it, it lived hidden away whilst I wasn’t wearing it, as I couldn’t bear to look at it. I used to tell anyone who asked that, when I was told I no longer had to wear it, I would burn it and send the charred lump to my surgeon. Clearly, I didn’t follow through with that plan.

None of my teenage friends had heard of scoliosis – I’d be intrigued to know if anyone reading this has, too – and I didn’t want to explain it to them. I didn’t want to risk being teased – which I’d had more than enough of for various reasons – or pitied. I very much wanted to ignore it. So for four years, I did.

I was offered surgery when I was 16 and surprised nobody when I turned it down (16 is the age at which, in the UK, patients consent for their own medical procedures). I wish I’d been able to take a photo of my surgeon’s face two years later when I requested that we book a surgery date. The floodgates then opened. I wanted to inform myself of what was to come – everything I knew at that point, I had learned from Judy Blume’s slightly-dated novel “Deenie” – so, like many people since, I turned to the internet.

At that point, I got lucky. The diagnosis which changed my life brought me the website which changed my life – I will post more about Scoliosis Support at a later date, because they deserve their own space – and I was exposed to a group of people I had no idea existed. When I told a handful of trusted friends, and made new friends on the internet who had gone or were going through the same thing, I no longer felt alone, I felt more capable of facing what was to come.

Thanks to friends, family and the incredible staff of the Royal National Orthopaedic Hospital, Stanmore, I pretty much sailed through my surgery and recovery. There were bad days – weeks, maybe, Mum? – but I got there. I am forever indebted to those who helped me. Thanks to everyone who held my hands, dried my tears, performed a medical procedure or cheered me on, I am better. Today, tomorrow, next week and beyond, I can sit, stand, run (sometimes even vertically), ride a horse (and fall off a horse) and generally make the most of my life.

my final x-ray, July 2007

my final x-ray, July 2007

Having spent four years in silence, I’ve barely shut up about my scoliosis for the last eight – maybe I’m making up for lost time. On my first day at university, I used my 10.5 inch (thank you to my sister for measuring it) scar as my “interesting fact” when introducing myself to my class. I tell anyone who’ll listen that I’m bionic (the pictures don’t lie – I have five titanium screws and a rod attached to my spine). I’ve tried to convince three people that I was attacked by a shark (two of them believed me: one was drunk, the other was only eight years old. The one who didn’t fall for it was a teacher).

Today, I celebrate something which I once worked hard to conceal. My experience taught me to appreciate those who help me, to make the most of the abilities I have, and that you’re never alone.

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5 thoughts on “Bend me, Shape me

  1. Wow, there’s so much difference between the early and late x-rays. This is a really interesting post, and for me especially interesting because you’ve managed to ride despite all this.

    Sometimes I come out of a riding lesson wondering how I can ever hope be any good at riding (by which I mean be able to walk/trot/canter with reasonable control and steering on both reins – not go to the olympics!) because of my minor physical asymmetries. It’s really good to see that you didn’t have the ideal rider’s body, but it hasn’t stopped you riding. Thanks for showing me that.

    • thanks for the comment – it’s never something which I saw as causing my riding a problem, until I got on for the first time after surgery and my instructor said I looked loads better! Scoliosis affects the way your entire torso is balanced, so I was twisted as well as bent (that’s the easiest way to put it!) so once I was better aligned in three dimensions, my posture in the saddle was better. I like to think it wasn’t bad beforehand, I managed to compensate well, but it came more naturally afterwards.

      I’m glad you found it positive – thanks for reading.

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