Tuesday, 1 October 2019

My Scoliosis Journey



Scoliosis. 
That funny, funny word that up until I was around 14, I had no idea what it meant. 
A bolting horse, the briefest of screams, hitting the ground and then - nothing. 
Absolutely blank. 
My surgeon later told me that this is normal, to have fragments and chunks of memory missing from a traumatic event, and I was later diagnosed with PTSD from this incident which I've struggled with for the past 13 years. 
I still remember sitting in my trauma surgeons consulting room whilst he knelt next to my wheelchair and said that I needed to see a spinal specialist, because he thought I may have something else wrong with my spine than the fractures which we knew about. 
Another waiting room, another surgeon, and another X-Ray. 

I was disgusted by the image that I saw, and I still remember the cold feeling of dread as the surgeons looked from the computer screen over to me - surely that wasn't my spine. No, there was no way. There was no way that that was inside me. 
Denial hit for years later, wearing baggy clothes to hide the fact that I had gone from being completely straight to 'wonky' after being in a wheelchair for 8 weeks - the time which it took for the muscles in my spine to waste away and the scoliosis that I was most likely born with to come to the forefront. 
When the surgeons first mentioned the word 'surgery' (alongside 'prescription medication dependency' but less on that), I outright refused to listen to them. 
"You're going to paralyse me", "If something goes wrong I won't be able to walk again", "I know what it feels like to have no feeling in my legs, I'm not agreeing to any of this" were all lines I spat at my spinal surgeon in Oxford, who tried (and failed) to make me see sense that the scoliosis in my spine was having a negative impact on my life, and would need surgical intervention to fix. 
Fast forward to 2018, and I was back with a spinal surgeon, only this time it was one in Leeds and he took an entirely new approach to discussing spinal surgery. 
Unlike surgeons before him, he took the time to understand what scared me, and helped me to (very slowly) come to terms with what would need to happen in order to fix my spine. 
Two rods would be screwed in to my spine, with two surgeons, a neuro-surgeon and enough support staff to start a theatre company watching the whole thing and ready to jump in to action if anything were to go wrong. 
Even as I type this, I'm hunched over at my desk at home, popping more Naproxen and shuffling a hot water bottle around to stop the spasming in my spine which is becoming more and more frequent. 
I'm aware of how lucky I am to be in a country where I don't need health insurance to cover this (lord help me if I were born in America, I could not afford those premiums) , and even more so to have such an understanding surgeon who has spent the past year and a half building up my confidence and trust in him to be able to consent to this surgery. 
There are days where I can't put my socks on, because bending down is agonising. Getting in to the shower is a no go due to spasms in my back. Popping so many tablets that I gave myself stomach ulcers and still continued to take the tablets because the pain was blinding. Ringing my nan in tears because I couldn't face climbing a flight of stairs due to pain. 
My surgeon has made no qualms about telling me that this is going to require the comeback of all comebacks to get back to my fitness and crawl through the pain of recovery - but I'm ready. 
"Maybe it's time for you to stop horse riding" was the final words my surgeon said to me today as I left the room. 
Yes, maybe it is. Maybe it is indeed. 
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