My journey through scoliosis has been quite a battle. From having a back brace for four years to undergoing a seven-hour spinal fusion surgery, I never thought that a collection of thirty-three constantly growing bones, could have this much effect on me mentally and physically.
So what exactly is scoliosis and why is it so important to be informed about? Scoliosis can be defined as the abnormal lateral curvature of the spine and it directly affects about 28 million people worldwide. It has the capability to take off 14 years of someone’s life if not treated and it can also lead to heart damage. Scoliosis can also cause lung damage as well as chronic back pain. If it is not addressed or caught, it can worsen throughout the years and can cause a hunch back. The spine starts to twist and rotate causing even more issues than just a normal curve. It tends to be diagnosed right before or throughout puberty; between the ages of nine and fifteen. I was lucky enough to have my mother notice it early on when I was in 5th grade. I was 10 years old when I was diagnosed and I had many of the visible symptoms: uneven shoulders, one shoulder blade that protrudes more than the other, an uneven waist, and one hip that is just slightly higher than the other.
My mother discovered my scoliosis one day when she noticed how uneven my shoulders were. She was concerned, so she had me bend over and touch my toes so she could check and see if my spine was causing the unevenness in my shoulders. Sure enough it was; you could see and feel the curving of my spine. For that year, I had started seeing a spine doctor and I had frequent check-ups. It wasn’t until 6th grade that my spine started to curve even more causing my doctor to recommend that I get a back brace to wear.
When I first heard about having to get a back brace, I was actually excited. It was like when you were little and saw other kids with dental braces and thought they were cool and new so you wanted them; but this is a different kind of brace entirely and I overlooked that fact until I got one. A common misconception that people have about back brace’s is that they’re created to fix the scoliosis; which is an almost impossible task. The real use of a back brace is to stop the curve from getting worse over a person’s growth spurt years.
To get a back brace, I had to go to a specific office that designed prosthetics and back braces. When I arrived there, they took multiple measurements of my body so they could create a mold/brace that fit just right around my body. They then had to pick and choose spots to place padding that would push against my curve to stop it from moving even more. The brace was made of a hard plastic with foam-like padding throughout it. It had Velcro straps on the back to keep it as tight as possible. On top of ordering a back brace, I also had to order seamless, knit shirts to wear underneath it.
I began wearing the brace in the middle of 6th grade. I had to wear it 24/7 and I did just that. I was terrified and scared that kids were going to make fun of me but no one ever said anything. I always tried to wear things that would cover it up, but sometimes it stuck out, causing my self-confidence to plummet. The seamless shirts were what bothered me the most because you could always see them if you wanted to wear any type of shirt that had lower neckline. Wearing the brace was so painful. I was constantly sucking in to be able to move it because it would press against my body so hard and it would start to burn my skin in certain places. I couldn’t even take it off to sleep; meaning I had to sleep with my torso encased in hard plastic.
I had my first back brace from 6th to 7th grade and I had to get a new one for the next two years because I had grown out of it. I was supposed to wear my brace all the time each and every day for those next three years, but I didn’t. I was so sick and tired of being in pain 24/7 so I decided that I wouldn’t wear it to school in 7th grade, but I would put it on immediately when I got home from school. Gym class was another reason I stopped wearing it. I constantly had to have someone help me take it off and put it on every single time I changed. In 8th and 9th grade I only wore it when I went to bed because I just wanted to live my life. I wanted to be a normal kid and do things that normal kids do. Each year I wore it less and less until the curve got so bad that I had to get surgery.
I found out that I had to get surgery at the end of my 9th grade summer; at the beginning of sophomore year. At first I was terrified and I wanted to refuse surgery, but I knew that I couldn’t. I knew that I brought this upon myself by not wearing my brace. I had let my top curve get as bad as 49 degrees and my bottom curve as bad as 24 degrees. My spinal fusion took 7 hours but it took two months to recover from it. They placed a metal bar on one side of my spine and screws on the other side to hold it in place. I was in the ICU for two days and then I was in my own hospital room for 5 more days until I went home. The recovery process was a struggle and I constantly refused to do my physical therapy because I was in so much pain. I couldn’t even turn over on my side by myself; my mom had to grab the cloth I was on top of and she had to shift it as I was turning to help me move. I couldn’t even shower for a week. I often got really down mentally because I kept viewing the rest of my life like how I was then. I kept thinking that I would never get better and that I would constantly be in pain regardless of how well the surgery went.
I was stuck in bed for about the first month. I tried to walk around and get exercise but I would get tired extremely fast. The next month was all about catching up on schoolwork. I was lucky enough to have teachers that offered to come to my house after school to teach me the material. I also got a homeschool teacher to help me with classes where my teachers couldn’t come over and help me with. It was pretty easy getting caught up but it was difficult to sit in a chair for long periods of time. To integrate back into school, I went in for about half of the day and then I would go home and rest for the other half. I slowly stayed at school longer and longer until I was able to stay there the whole day without any issues.
I think the hardest thing for me through all of this was trying to always keep a positive outlook on things. I was always terrified to get surgery considering the fact that growing up my doctors would always tell me to wear my brace so I wouldn’t ever have to go through the “horrible” surgery that some people do. They always made it seem like it was the worst thing on earth. In my opinion, the back brace was the worst thing on the earth. Although I can’t deny the fact that it has made me an incredibly strong person, it really hurt me emotionally. I never was made fun of when I wore the brace but I sure did when I stopped. When I was in 8th grade, I would always get made fun of for the way I walked. Because of my curve, I walked with my toes pointed outward. I’d constantly get compared to a penguin and I would just laugh it off because I felt like I had no other choice. One other thing I’ve never forgotten is how kids treated a different kid who had scoliosis at my school. Whenever the boy would take off his back brace to play basketball, a group of guys would go up to it and put it on, laugh, and make fun of him because he was larger than other kids.
If I could take one thing from my entire experience and have other people learn from it, it would be this: compassion. Every single person is going through something, whether it be emotional or physical, it’s something unique that no one else will truly, fully understand. We need each other’s support and love, not their criticism and hate. Everyone has their own story and we have the power to influence everyone just by merely helping them; even if it means just telling them that they’re strong enough to face whatever is thrown at them.
My advice to anyone diagnosed with scoliosis is that it is not the end of the world. Even if surgery or a back brace isn’t an option, exercise and stretching can really help a lot. It’s all about the outlook you have on the situation. It’s your life, you can’t change the fact that you’ve been diagnosed; all you can do is take the situation as it is and deal with it. You grow from it and you become a stronger person. Always remember that there is strength in the curve.
