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Changing Shape

Severe scoliosis caused a twist in the tale of my teenage years.

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Being 15 was hard on me in all the regular ways: I hated school. I had no boobs. And I’d never so much as kissed someone.

But as if these typical teenage setbacks weren’t enough (and watch any teen movie – they are), I also had a curved spine. An increasingly severe curve. It was pushing my right shoulder out into a triangle, barrelling the left side of my rib cage into a hump, shifting my bones until everything hurt. Clothes jutted where they should fall flat. My pelvis was uneven.

And it hurt.

If I sat for long periods of time, aches ricocheted. Often, it wasn’t pain that forced the tears (and oh, there were plenty), but frustration. Why couldn’t I just experience all those standard adolescent problems? Why did I have to take on extra responsibility for my body? Why couldn’t I cast off this figure and shrug on another that didn’t require physio and extra thought about dressing and worried conversations between my parents?

The condition that gave me this strangely shaped back of mine – which twisted in ways it shouldn’t – had a name: idiopathic scoliosis. The "idiopathic" bit means, “We don’t know why this has happened, but it has.” The "scoliosis" part (an apt word for a curved spine, mine slowly edging closer to an ‘s’ than any of those straight-backed consonants like "l") comes from the Greek "skolios", meaning "bent". It’s a condition most likely to affect teenage girls.

I was diagnosed at age 14, shivering while my GP examined the strange lump above my waistband that my mum had noticed a few days previously. At first "scoliosis" meant little beyond a useful label; we were reassured that it probably wasn’t much to worry about. This nonchalance was echoed by a consultant appraising my x-rays a few months later. He asked if I’d started my period, told me I wouldn’t grow any more, and brusquely suggested I went away and lived my life. We took him at his word.

Six months, a summer holiday, and two growth spurts later, I was back in the orthopaedic unit. Now I was 15 and facing down my GCSEs, it was time for a checkup. I sat in front of another consultant, staring at my new x-rays.

And there was my spine, bent in the shape of a white question mark against a black background. I watched the consultant’s face go pink from the chin upward. It was like watching red wine soak through a dishcloth.

Turns out that despite those growth spurts, I’d actually shrunk an inch.

My spine’s curvature had increased massively, from 56 degrees to nearly 80 degrees (straight is zero degrees; a right angle, obviously, is 90). We later found out that surgery is recommended for anything over 45 degrees. If you’re still going through puberty, it will get worse. Of course it will. Your body still has so much growing, lengthening, and widening to do.

For lots of women, the narrative for puberty includes "changing shape" and "gaining curves". I experienced both, but not in any way I’d expected. I was busy dealing with a body that felt vaguely alien. More than that: a body that felt like a betrayal.

I was keenly aware of my physical differences, bristling at anyone who pointed them out. I snapped at my mum when she asked about my shoulders. I tried (and failed) to stop tears prickling when I caught whispers from my peers. I wanted to hide from myself – to pretend that everything was fine, to keep away from mirrors that might reveal my crooked, crooked spine.

I was lucky, though. At birth, my grandma gave me a gift: health insurance. So while the waiting list for my operation on the NHS stretches to six months or more, I had the immense privilege of undergoing mine in a matter of weeks.

Very quickly, life was put on hold. Plans were made and bags packed until, terrifyingly fast, I was lying in a hospital robe and paper knickers with an anaesthetist asking me to count back from 10. All was black before I hit six.

Perhaps the most crucial five and a half hours of my life remain (thank god) blank to me: a time where I disappeared, reduced to a body that my brilliant surgeon could remould. He cut through the skin in my back, clamped it open, worked through the muscle, manually straightened my spine by screwing, hooking, and bolting a titanium rod on either side of it, packed my vertebrae with artificial bone graft, then sewed me up again. Carpentry followed by seamstressing.

Like the condition itself, this process has a heavy full name too: posterior instrumented fusion for adolescent idiopathic scoliosis.

Over the next six months, that section of my spine would fuse solid, stopping all chance of twisting. The rods were there for support while the bone graft did its work.

I spent a night in intensive care, a week in hospital, and two months off school. I moved from being hardly able to walk – reliant on others to feed me, clean me, clothe me – through to fragile mobility, through to recovery. At first, it was agonizing. Then, after several weeks, it was strange. The metal in my back felt alien. Each day I took more steps. Each day, the pain diminished a little.

Six years on, those two metal rods still stand, scaffolding my spine. They’ve done their job admirably: I woke up from surgery two and a half inches taller, with a straighter backbone (at a neat 22 degrees of curvature).

Now I possess a body that’s a bit wonky and achy and occasionally creaky, but generally functional. I have a long scar that’s faded from bright pink to lightest silver, and a bloody good story to tell at parties.

But I don’t want to neatly divide my life into before surgery and after. Before the dark, and after muggy, morphine-blurred resurfacing. The narrative is messier than that. Still, things certainly shifted. I was confronted at age 15 with the knowledge that my body was a fallible thing: that it could go seriously wrong, that living in a state free from pain wasn’t guaranteed.

It was a formative time. But then, teenage years are: a period of flux and change and development. They’re full of delicate negotiations about where you fit in the world around you. Mine were also a time of physical forming and reforming. I was a shapeshifter. Straight up and down to twisted and back again.

We like using winding, bending words to describe change: a twist in the tale, life’s unexpected turns, a curve in the path. I got them all. An altered back and a new route to tread.


Rosalind Jana is the author of Notes on Being Teenage. Copies are available on Amazon and Hive.