I like to think I have a sort of double life.
One half is the person who always writes on here, about fashion and art and all the random, but happy things that happen in her life.
The other, is a scoliosis patient. Whos has had a spinal disease for about 3 years, who had major spinal reconstruction surgery when she was 16 and is known as patient 653880.
November 2006, was when it all began. I found it harder to do anything without back pain and a lump began to appear on my back. But I ignored it.
May 2007, and the pain was considerably worse and the lump became impossible to ignore, so my Mum made me go to the doctors. He told me it was a "winging scapular" and was nothing to worry about, physio was the cure.
July 2007, I went to physio and straight away, she got that look on her face and said quietly, "I think you have scoliosis". Not knowing what it was, I didn't think it was anything important. But then she referred me to the orthopaedic hospital, who was able to confirm that I had scoliosis, that I had been developing this disease slowly, without even realising it.
6th December 2007, I had the first x-rays. Imagine a normal day, at school in the morning, just 15 and thinking everything was fine. Then through the night, you're sat in a corner trying to understand the fact that you have no choice, but to have spinal surgery. The curves in my spine were over 60degrees and rapidly getting worse.
Only 10% of people with scoliosis, have it severely enough to need surgery. Only about 7% of those actually go through with the surgery. For it to be considered "severe" the curves need to be over 40 degrees. Once it goes over that 40 mark, it is rare for it to stop. As the surgeon put it, you're spine will continue to "collapse". The curves in your spine cause your ribs to rotate round, leaving you deformed, the ribs crush your lungs and heart, meaning many people have lung/ heart failure and many elderly with scoliosis, cannot breathe on their own. It is completely impossible to escape it. No cure, no hope, right?
January 2008, I put my name down on the waiting list for the surgery and so it began. I don't remember what actually convinced me to do it.
For the next few months, I still got up everyday hoping that the huge lumps on my back would be gone. But I was always disappointed. Each day began this way, never an exception. I spent the evenings sat on the internet, reading everything I could find on the surgery and scoliosis. I'd convince myself it was the right decision and go to sleep happy, but then I'd wake up the next day, and it would all begin again. I decided to give up on my dreams of a career in textiles/ fashion. Like I said before, I stopped living. I applied for a childcare course at college and sat waiting for that letter. Everything I did, I based it around my scoliosis. The future for me, ended in a couple of months. Nothing could exist beyond that. No matter how much I wanted to see the long-term, I couldn't.
July 2008 and I finally got my letter. The pre-op was on the 10th July, and the surgery 16th September. I don't remember a thing from that summer. It all went by so quick, all I did was count down the days. Then it reached this day, 15th September. By this point, I'd perfected my way of dealing with it all. Laugh, make a joke and claim it's not a big deal. I was so convinced it was my last day of being alive, and I did nothing. Absaloutely fuck all. If I had died, what would I have even been remembered for? I'd spent the last year of my life just sitting.
But I didn't.
I'm still here, amazingly, having my back sliced open and pinned back, whilst they physically pulled my spine into a vaguely normal position, after cutting through the nerves and muscles, then smashing each of my ribs and taking out sections of each of them. 2.5ltrs of blood lost, no food eaten and an insane amount of suicidal thoughts, didn't destroy me. My family was convinced I had depression afterwards, and maybe I did. But I think it was more shock, that I was alive. I'd been so prepared for never suriving it, that now I had and after I had stopped everything in my life, I realised I really had nothing.
So that's when I decided to actually do something. And the fashion thing began. It was like the only normal thing I had at the time, strangely comforting in amongst the long recovery and wearing of the awful, awful spinal cast. I guess that's partly why I depend on it so much now, this sounds so cliched and lame, but it saved me. 2 years of pain and sadness, began to fade away. And this is where I am now. Never going to be forgotten, never going to be understoof but definately never going to be regretted.
This post really doesn't have much point, but I never tell people about all this.
I've already been banned from 1 online support group, for lets say... voicing my opinions against some people who wished to start a petition to ban this surgery. Sure, have your opinion. But if this had been banned, I'd still be the girl sitting at home everyday to scared to do anything because of the pain and lumps on her back. I'm not going to say they're wrong, I may regret this 1 day. But otherwise, I don't want anyone to have to live their life the way I did. I want them to take the opportunity, and not have to read all the twisted sites and messages from people exaggerating the surgery. Fuck them.
Just to demonstrate my point, I saved a lovely little email from a "doctor" in America, who had a site promoting his alternative treatment. Shamefully, this email made me hate myself for deciding to have surgery, but reading it now, why did I even bother to read it? The man can't even punctuate properly.
You will unfortunately learn the hard way...it is not the immediate surgery,,,but that which occurs 10-20 years later..if you read all the letters I get daily from those who have undergone the barbaric surgery you are about to undergo,,,you would think twice...but you have decided that your orthopedic drs will help. You have no idea what you are about to do..either way,,,good luck.,...
So, Daniel Hersh (i don't care if i can't post his name on here, sue me) 1 year after my "barbaric" surgery, i have a screw loose that may need taking out someday, i have a long scar all the way down my back, my body is still unequal, the bottom half of my spine is still slightly curved and the muscles still haven't started working properly. But guess what? I don't regret it. and I am so pleased, that your email didn't frighten me off the surgery. I admit, I came very very close to calling it all off.
But if I had, this is how I would be right now:
(not always topless, facing away from a camera though...)
I understand someone not choosing to have surgery because they're scared,
but to me, living a life without any hope is far scarier than anything they can do to you.
Don't listen to the pricks, please. Then you can be sat there a year afterwards thinking about all the things you've done since, that you know you wouldn't have done before, the things you learnt and all the things you got from it.
Happy 1st Birthday metal spine
x
