I was diagnosed with scoliosis at 14 during a routine sports physical. A couple weeks later, I met with an orthopaedist in Chapel Hill. It was at that first appointment that I was told I'd need spinal fusion surgery to correct my curves. Before that I'd never even broken a bone, but soon I'd have to undergo major surgery to treat a disease I hardly knew about. I was scared. On July 22, 2013, less than a year after my diagnosis, I had two rods attached to my spine with nine hooks and one wire. I was in the hospital for five days and I wasn't allowed to do any physical activity aside from every-day tasks for eight months. I was allowed to go back to playing softball a year after my surgery. It was--and still is--a very difficult disease to deal with. Over the years I've shared my journey with countless people and I've found that there are some things people without scoliosis just can't understand.
1. The excitement that comes with meeting other people with scoliosis and/or spinal fusion rods.
Dealing with scoliosis on your own is very difficult. Even caring friends and family aren't always enough to ease the ache that comes with the diagnosis. That's why finding fellow ScoliFighters is such a big deal. They are the only people in the world that truly understand what you're going through or will go through. They can give you advice and serve as a shoulder to cry on. Maybe even more exciting than finding a friend with scoliosis, is finding out that celebrities have scoliosis because they prove that you can and will amount to more than your disease. (Shoutout to Martha Hunt and Shailene Woodley!)
2. The virtually constant pain and discomfort.
A lot of people think that since I had spinal fusion surgery I am cured and 100% okay. I'm not. For about two years after my surgery I had some sort of pain literally every day. Nowadays it's less frequent but still just as hard to deal with. Every-day pain medicine doesn't help because it doesn't treat nerve pain and it's often not strong enough to take care of the muscle aches that come along with being partially a robot. No one with scoliosis wants pity, that simply want you to acknowledge that some days they will hurt and that's okay.
3. What it's like to be cold from the inside.
I got cold easily before my surgery but having metal rods in my back took it to a whole new level. When it's cold the rods amplify it just like metal would if it were on the outside. When this happens the muscles around my spine tighten and spasm, making for an uncomfortable and creepy sensation.
4. My twisted sense of humor (yes, that's a scoliosis joke).
I need to start off by saying that scoliosis should never be made fun of and should always be taken seriously but sometimes laughter is the best medicine. A week or two ago I saw the Bible verse Luke 3:5, which in some translations opens with ". . .and the crooked shall be made straight." I burst into laughter. Another example is when I was hit in the eye with a softball a couple of months back. My sister sent me this picture:
Without skipping a beat I asked, "Is that a scoliosis joke!?" She laughed, too, when she realized I wasn't legitimately offended.
5. I am not fragile.
There was a period of time immediately following my surgery that I was not allowed to bear weight on my back and needed assistance with carrying bags and other heavy objects. Since then I've been cleared and am able to do all lifting and moving that a "normal" person can do but some people still think I'm delicate and need to live in a bubble. My softball coach feared putting me in games and the moms of my friends often warn them not to rough house with me. It's incredibly frustrating. My spine is less likely to be damaged than someone that hasn't undergone spinal fusion being that the middle portion of it is now one, continuous bone. My best friend also had spinal fusion surgery and her doctor told her that one of his patients was in a serious car accident and if he hadn't been fused he would have broken his back and died. Stop thinking I shouldn't do certain things. I know my limits.
6. I truly can't bend certain ways.
As mentioned above, the middle portion of my spine is one bone instead of separate vertebrae. My surgeon once told me that most flexibility comes from the lumbar spine so I wouldn't lose much since it wouldn't be fused. That is mostly true. I've regained almost all of my flexibility and have even taught myself to do backbends which I couldn't do pre-fusion but my back cannot bend like a non-fused spine. For example, when I do backbends I don't look as rounded as most people. That's because the middle of my spine stays straight while the portions above and below the fusion bend to compensate. Don't try to correct me when I do stretches or other activities that involve flexibility because I will never be able to do it exactly as you do.
7. I want you to ask me about my scar.
No matter how cliche it sounds, scoliosis and surgery have made me into the person I am today. I'm proud of what I've gone through and I acknowledge how far I've come every chance I get. I want you to do the same. Don't be afraid to ask me questions about scoliosis in general or my diagnosis specifically. If you see my scar it's because I want you to. I won't be offended by your curiosity.
8. I don't want you to pretend to understand.
I need support. I need you to ask me how I am. I need you to try to relate, but I do not need you to pretend to understand what I've gone through unless you've walked the same path. It is true that just about everyone will experience back pain during their lifetime but telling me that your back is sore because you worked out too hard or that you have a five degree curve doesn't help me. By telling me that you're negating everything I've gone through, so please, ask questions, listen to me and sympathize, but accept that there's no need for you to empathize. I don't wish scoliosis on anyone and I hope you are never forced to actually understand what my life is like.
Last week I attended the Curvy Girls (Inter)National Scoliosis convention. Meeting people that actually understand what I've been through, and will continue to overcome was a freeing experience, one I want to never forget, and coming home was harder than I ever imagined it would be. I had this post in mind before I went to the convention but I felt it was even more pertinent after the fact. I feel it is my responsibility as a writer and as a ScoliFighter to be a voice for those too nervous to raise theirs. Everyone needs reminders that they are not alone and I admit that these are not universal truths about scoliosis, for everyone's journey with the disease is different, but it is my hope that I've served as a voice for many.
Lead Image Credit: Alexa Castro-Giovanni, ACG Photography