What It Feels Like to Have Scoliosis

Maya Shirley-Brown // As told to Gwyneth Schmidt

I was sitting in the doctor’s office, unaware that in just two months, my life would change completely. My mind was on the soccer game that I was supposed to go to that night. Little did I know, it would be the last game that I would play in two years. I tried to soak in every detail while playing: the grass beneath my feet, the feeling of my foot impacting the ball—sending it soaring towards the goal. Looking back, I really didn’t understand how much my life would actually change in a short amount of time.

When you have Scoliosis, your shoulders and hips are uneven caused by a curved spine. I couldn’t find clothes that fit. I was walking weirdly. I had excruciating pain that interfered with my daily life. I lost the ability to stand up straight. They diagnosed me the summer before freshman year after my parents noticed on a family vacation that one of my shoulders was too high. I continued to push through the pain doing what I loved: soccer, cross country, track, rock climbing. Then the pain became unbearable. 

Two months later, in August, I underwent surgery. It’s one of the worst surgeries that you can have. I was under anesthesia for six hours. I woke up with two titanium rods and twenty screws in my spine. I was at the hospital for a week. For the first month I was in bed. I started going back to school, but could only go for short amounts of time. By Christmas, it was still hard to go a full day. I had to relearn how to walk. I had to relearn how to sit. My body got two inches taller. It all happened so fast that it didn’t give me a lot of time to process what was happening. 

Today I still don’t have any feeling where they did the surgery on my back. I can’t bend my back or hunch over, I can only bend at the waist. I finally got to go rock climbing again this summer for the first time since the surgery. Running cross country last year was really hard and I realized that I hadn’t fully recovered even after a year. When people ask me what it feels like, I describe it to people as being a puppet and someone’s holding you up all the time and you’re unable to relax. But even through all of the hardships, I’m grateful for the technology that we have today to help me survive. If Scoliosis goes untreated, it can begin to press on your lungs and lead to death. When I had my surgery, I was already having symptoms like shortness of breath. I didn’t think that it could get any worse, but it did. 

I’ve had multiple phone calls with other kids that are going into surgery. Most of them are younger. It’s comforting to see someone that was able to come out the other side. Scoliosis is more common than you would think it is. There are people in our school that have gone through it. There was a girl in my Dad’s class that I talked with to help her know that it was going to be ok, and now she’s healed too. I just want people to know that you can get through it. You’re stronger than you think.