I was diagnosed with idiopathic scoliosis at age eleven and by the age of thirteen my curvature had hit 75 degrees. Between then and now I've had 5 surgeries in an attempt to correct my spine (which I've long since decided has not only a mind of its own, but probably a small community of tiny people whose sole goal in life is to make me miserable in any way possible). I'm twenty now, with still one, possibly two surgeries to look forward to in the future. I've done the Boston brace (three times, the third met its demise as a very fine scratching post for my cats) I've had the Harrington rods and then swiftly had them removed (part of it now sits upstairs in my jewelry box as well as a handful of the bits and bobs and screws used to keep me upright, I wear them as a necklace and believe me when I say it is the ultimate conversation piece. "Oh, that's unique, where did you get it?" "Here, hold it... They came from my back." "Ga!")
To be perfectly honest, I've never done much reading up on Scoliosis. I figured I knew the basics of it, my spine is curvy (and also curly now), it gives me a hump, makes me cranky, causes people to point and stare, and makes it rather difficult to sit in a chair. What more do I need? Facts are for Doctors and people with diplomas! Stumbling across Scoliosis Nutty the other day I realized that there was a solid chance that I may pass this on to any kids I might have, and perhaps being able to educate myself might make the experience for any offspring easier.
People underestimate Scoliosis. It's a common thing to hear "Oh, well it's not cancer so what are you complaining about?" True, when I heard that I was complaining a lot. My earlier years with the disaster known as my back consisted of me being a self-centered whiner with no real concept of others suffering. Of course I was also a teenager so my attitude was really nothing unique. The experience changes you though, you have to learn to accept that people are generally undereducated about the disease, and even when they hear it, they don't consider the repercussions of it; diminished lung-capacity, rib twisting (that sounds painful, doesn't it?), not to mention the pain.
"Oh, but surgery can fix that."
Yes, and then when your spine is fused together guess what else you can do? Nothing. At least, not cliff-jumping which I had made a note of asking my surgeon about. His reaction to the idea made the whole hospital visit worth it. Spinal fusion isn't something you can change your mind about later. It's a forever thing. Unless you have spine like mine in which case "Spinal-Fusion" translates into body speak as "Move further! Keep twisting! We've almost got her broken!" Followed by malevolent laughter.
I'm fused from somewhere like T1 to L4 (or possibly the other way around. I'm not actually sure. I think, it's one of those things that I've really absorbed without considering.) Unfortunately that means that the two last discs in my back get to take all the strain, which would account for the chronic pain and the small pharmacy I ingest on a daily basis (Helpful hint of the day: Get to know your pharmacists, they are your friends. Not best friends mind you, that would be your surgeon. Pharmacists are like your friends that always call you on Friday night to hang out at the nearest swanky club and then ask to borrow your cutest shoes when they pick you up.)
The pain sucks, simple as that. I used to be the complaining type, and why note? It's horrible, and if you don't suffer from it then it'll be really difficult to understand, but I realized something amazing. I hate being miserable from my pain. Obviously I can't make it disappear, no one can, but I can stop looking at it like a fire breathing dragon burning down a small village and see it in a new light. Sarcasm. Oh, I know, it can be offensive, and a little 'out there' but man, nothing beats telling a total stranger who comments on your back that it's a battle scar from a to-the-death challenge you had with sixteen corrupt Ronin who burned your home down and kidnapped your lover.
Incidentally I managed to take fifteen of them down, that one ringleader is still out there, and he still has Tom. Mark my words, he will rue the day he crossed me!
So there you have it. We all have coping mechanisms, and I have to say mine has worked out quite well for me. I think, however, for a person to find their own way to cope they first have to come to term with the fact that they have Scoliosis, and yes it sucks, and yes there is nothing to be done about it. It's a life-altering journey, and one that is different for everyone. How you treat every hospital visit, every x-ray and MRI, every sleepless night, and every attempt to just exist will come to directly influence every minute of your life once you can finally walk away from the hospital for good. I'm not there yet, knowing that I've got a surgery or two still ahead of me hangs over like a black cloud, but I can't let that control my outlook on life.
If I'm going to let my outlook to life be defined by any body part, I'd rather it be my right elbow, or my nose, just the bridge though.
That's it from me for now, assuming I'm not told that my 'unique' way of handling the situation isn't exactly what this blog is looking for (and I would completely understand) I'll be back. I've always meant to record my journey but lacked the motivation. And nothing motivates like knowing I can write and look at Kanye West memes while I'm at it!