Along with June being Pride Month, it’s also Scoliosis Awareness Month! Since scoliosis has been a part of my life for more than half of it, I thought I’d share my journey with scoliosis. I’m one of those people who’s open to questions about things like this, whereas I know many others want to keep it hidden.
For a little background information, scoliosis is a condition in which the spine curves more than its natural curve, resulting in a C- or S-shape. The hips or shoulders, because of it, may be slanted, which is generally one way to tell if a person has scoliosis. It’s much more common in people assigned female at birth.
I was in third grade when I was diagnosed with scoliosis, and was actually found through allergy testing. Still not quite sure how that worked. Because my curve was small then, I was put on the “wait and see” treatment plan; generally doctors won’t want to jump to bracing or surgery that young unless the curve is massive.
So for my plan, I went to see a chiropractor about once a week on and off for a few years. I never liked it, and found it strange that despite my apparent curve, I was constantly complimented on my posture. FYI—the two have nearly nothing to do with each other. People with scoliosis can have amazing posture.
Going into seventh grade, I had a growth spurt, so my parents wanted to make sure that my curve didn’t worsen to the point where I had to be put in a brace. That was the worst-case scenario in my mind, and I kept obsessing over it going into the appointment in January 2015.
Come to find out, from a resident instead of my normal orthopedist no less, my curve progressed too much for bracing. That meant, before eighth grade started, I would need to get spinal fusion surgery to correct it. It was framed as my choice, and I know that my mom was very hesitant. Even though I left the office crying, I left with the mindset that I would be getting the surgery.
My orthopedist, who I actually do like a lot, gave me something very valuable: the email of another of her patients, who was my age and starting a local branch of Curvy Girls Scoliosis. The group began to offer support for young girls with scoliosis, and just my luck, the first meeting would be in February! I emailed her and ended up being one of the first three girls in our local group, which has grown so much since then—today, we have about 25 families total, maybe more.
That July, I had my surgery. My curve wasn’t super stretched out, so my surgery lasted only five hours, compared to the average eight. That was the first time I had ever stayed overnight in a hospital, let alone for five days. I had to relearn sitting up (SUPER painful at first), putting on pants and even walking and going up stairs. Not gonna lie, the first two days were kind of torture, but I got the hang of it after day three.
My upper two lumbar and lower three thoracic vertebrae were fused and held together with a rod and screws. Back then it felt scarier, since I was switching from middle school to junior high school, but I recovered well. Of course, there were other parts I despised, like the protective brace I had to wear to school for the first few months. I’m still convinced that one time I just about passed out in chorus was because of the extra heat of the brace.
You can still see the scar now—it’s long and stretches from my upper left side, reaching just above the band of my bra to about six inches from my belly button. A few inches away, more on my back, is a smaller, circular scar from the chest tube used during surgery. Not only do I have those scars, but my ribs on my left side are shaped a little oddly, since the doctors had to take one out completely for a bone graft and cut another in half.
These noticeable traits never caused me embarrassment, though. That summer was actually the first where I wore a bikini, and I wore it with pride. After the surgery, I gained an inch and a half in height and some extra weight and stretch marks, but I was still comfortable with my body. Years later, I still am, stretch marks and all. I don’t see why they should be erased, why I should want to hide my scar like the orthopedist and my parents assumed I would. They’re a part of me, so I don’t see a reason to get rid of them.
In the months before my surgery and the years after, Curvy Girls Scoliosis was a definite blessing. I found such a good place with them, and have a strong kinship with a lot of the girls in the group. I still find it a little funny, though, that I’m one of maybe three girls in the group who’s only had the one spinal fusion surgery.
They’ve helped me find pride in my scoliosis and scars, and I feel that that’s something a lot of people should know: scoliosis and the scars from surgery are nothing to be ashamed of. Rock them! They’re a part of you!
I’m so glad to know them and other people I’ve met along the way with scoliosis. It definitely helped to draw and write some of my favorite characters so they’re in the same boat as me. Even though I have back pain to manage every now and then, which I’ve written an article about before, I still feel great and accepting about my scoliosis. Remember the Curvy Girls Scoliosis motto: bent, not broken!