Okay, so I never blog anymore, sorry, but something has driven me to it.
That thing is this website; http://www.iscoliosis.com.
On the website there are some basic things said about scoliosis, some statistics, some stuff about back braces (which, btw, are not actually proven to work) and some patient stories.
In fact, the only thing they seem to have forgotten to tell the reader, most likely someone with scoliosis wanting to find out more, is just how much it SUCKS.
Now I know it's not exactly what you want to hear just before you go and get major spinal surgery done, but really, those patient stories are MISLEADING.
Go on then, I'm intrigued. How can you like a spinal deformation that people resent (believe me, I know, I got thrown out of a ballet class because of a discriminative teacher), looks weird (meaning people politely let you know that you have something sticking out under your clothes and you have to politely let them know that it's your shoulder blade) and causes you to have (I would say life changing) surgery, which means you put everything on hold for a year or two.
Don't get me wrong, I don't hate having scoliosis, its a part of me as much as it is anyone else who has been through it, but I definitely do not like it, let alone love it. It is an upheaval.
Before my ballet teacher insisted I have my spine checked I used to dream of becoming a dancer. When I was six it was what I wanted to do. But I know it won't happen now, it probably wouldn't have anyway, but it's the knowing for a fact. It feels limiting. Like some of my dreams won't happen. But so long as I can still dance, which is what I love to do, I will not be completely devastated. I'll never be a breaker, or a ballerina, but I can still do my Hip Hop and Urban Ballet classes, and my break dance workshops and I can still enjoy them, even if I can't do an airflare.
Oh dear, it must have been so stressful for this girl's family! Both her and her sister had surgery at the same time!!! It was awful enough with just me!!!!
I am also so grateful that here in England we have a NHS, this would be so expensive you'd need a 2 for 1 deal!!!
I personally spent ten days in hospital. They gave me a medicine to calm me, the 'pre-med' and there were a couple of girls around who had ongoing conditions and they were really comforting. They'd obviously been through a lot. I wonder if they're still there now.
I was wheeled on a bed to the operating room. I moved from one bed to another, and that's as far as I remember.
Now, the next thing I notice about this account is the lack of anything actually about the time this girl (Emily) spent in hospital. I wrote an account of that earlier this year, on the two year anniversary of me being in hospital;
"Yesterday was the twentieth of march two thousand and nine.
In all the books there is a description of coming back into consciousness. Swirling colours, a sudden realisation of what is going on.
I do not remember waking up.
My Mum says at first I did not recognize my parents. The doctor kept asking me to look over at them, and after a while I got there. The first night was hard. Maybe it's a good thing I do not remember it.
The next days get mixed up in my mind. They were all so similar. I couldn't eat, I was wheeled to x-ray for spinal scans and lung scans - I was having to constantly have morphine, on a button every four minutes. It's hazy, but I remember those four minutes seeming like forever, waiting for the button to go green. I couldn't lift my head, but for some reason I don't think I was that worried that I was weak. I was quite drugged up, I guess. And there were more important things to worry about, like too much fluid in my lungs.
I discovered in hospital that I was incapable of swallowing pills. Great thing to learn right after an eight hour spinal operation, I know. There was a particular pill that was necessary, so the nurse had to crush it for me and mix it with water. I remember it was particularly vile, so she mixed this really strong squash with it. It stained my teeth purple, I seem to remember, and ever since then I have not been able to drink that type of squash. It just makes me feel ill.
Learning to walk again is a strange thing. You know how to do it, just everything is slightly different, balance is difficult, and new. Add in the fact that every thing is extremely tiring, well, not easy. Sitting up was horrible, I had to lie down most of the time for the next few weeks.
I cried when I could not walk up the stairs. They said that once I could climb the stairs in one go I could go home. Ten days was enough.
Eight hours of the twentieth of march two thousand and seven was taken up in theatre. Look at me now."
And that only touches on the pain and inability to eat. When I came out of hospital I was literally skin and bones. Literally. Three weeks after my operation, I could pretty much walk around by myself, and my mum let me out of her sight for the first time. She walked me down to the park so I could meet my friend Caroline. We sat on a bench and talked for a while before I got tired. In that week I tried to lift the kettle for the first time. I dropped it, I had lost all my muscles.
After getting out of hospital I refused to take any painkillers (I'd had enough) which meant I couldn't drive over the speed bumps near our house because that was really painful.
I went back to school after about 8 weeks.
What you don't realise is exactly how tiring everything is going to be after your operation. After about six months I started a dance class for beginners. It was not at all intense, but I had no energy for anything else and I was not yet on compulsory school sports so I had to give up. I did very little physical activity for the first year, and no extra-curricular stuff for over 2. I did a couple of break workshops in the holidays, because beginners break is great, and now I dance for two hours a week and play school hockey/netball/running for another two, but I missed training so I'm not amazing or anything. I'm just starting to regain flexibility in my spine, when I try to touch my toes I can now get past my knees.
Basically, having scoliosis isn't the end of the world. The scars fade, the shoulder blade is less prominent after surgery, you get back to being you, but it isn't just smiles and sunshine either, there are some bad bits, and they shouldn't be forgotten. Scoliosis surgery is serious, it is a trauma, both physically and psychologically. It is by no means an easy path, but sometimes a necessary one.
Despite all of this, despite my moans and groans and doom and gloom, I'd recommend the surgery to anyone. It sorted me out, I don't get back pain any more - theres no reason why it shouldn't do it for you.
