Patient Stories

Hi, My name is Chaheti Mathur, and I am a high schooler from California. Since I was 7 years old, I have been a singer and vocalist. I was diagnosed with idiopathic lumbar scoliosis at age 11 in a school physical exam, but my spine was only curved one degree over the cutoff for being non-scoliotic, so I was not given any treatment. I did not think about this diagnosis further until the end of sixth grade, when my mother noticed that one shoulder was higher than the other one.

In just one year, my scoliosis got extremely severe—not even bracing would help correct it. I was told I would have to get 2 titanium rods in my spine to help correct my 64-degree curve. Suddenly, each passing day before surgery felt like a dreadful countdown to that day. I was only 12 at the time, and the fact that I had to undergo a major surgery drove me up the wall. Even though this was the case, I knew it was in my best interest to fix my spine. At that age I had never been keen on my appearance, and I was most insecure about my body, so internally I was happy that my shoulders and hips would be even again, but I couldn’t help but think about that big ugly scar I would have to carry around for the rest of my life.

It was August 17th, during the heart of COVID-19 and quarantine. It was surgery day at the Scottish Rite Hospital of Dallas. The day my body was going to be changed forever. I head into the hospital, hungry, thirsty, and extremely anxious. At twelve, I did not want to add more stress to my family that I felt like I had already inflicted, so I did not make a big deal of my anxiety and put on a brave face. What my family did not know is that my anxiety was tearing me apart. Eating me alive. Keeping me up at night. Crying to my friends in secret. The worst part was, only one parent was allowed to be with me for my recovery. The said parent was my father, who worked extremely hard providing for our family during COVID. Prior to my surgery, he had lost his job, so when I went into surgery, the family had no income coming in.

Before my surgery, I felt all sorts of emotions. I personally like to call it “Scoliosis guilt.” The guilt that comes with scoliosis is like no other. I experienced different types of guilt. The first type was burdening my family with having to spend hard-earned money to fix myself. That could have gone to something so much better, like my sister’s college fund or my other sister’s savings. I felt so selfish for having to spend the family budget on myself. The other type of guilt I felt was sibling guilt. I was always a medically fragile child as I was born premature, so my parents always had to pay extra attention to me, and as I got older I realized that I was taking away their attention. I was distraught, because finally, after moving to Texas, my bronchitis and lung problems went away, meaning my parents could pay more attention to my sisters. That all went away when I got my diagnosis. I was going to be medically fragile again, and my sisters would be overshadowed again. One of my older sisters was going to senior year and applying for college, and even despite that, she was one of my biggest supporters through my recovery. Even through all the stress of navigating through college applications, she still tried to make me feel better. She is such an amazing sister, and I wished that it did not have to be the way that it was. She was such a good sister during my recovery, and it hurt me, to say the least, that I could not reciprocate. I just wanted to be a good younger sister, but my diagnosis told me otherwise, and I carried that deep in my chest.

The surgery itself went well, and I made a very good recovery. The recovery process itself? It was the absolute worst thing I have ever gone through, especially those 5 nights in the hospital. Those late-night walks to try to walk again. The late-night button press for a nurse to help me change positions. The conversations that the physical therapists tried to uphold in order to take my mind off of my pain. The sudden feeling of being a child being fed again, but in a dystopian way. All these feelings ultimately made me stronger in the long run. It made me realize that I am a strong person. That I can overcome something as major as spinal fusion. Some of my biggest fears, besides the anticipation of the ugly red scar, was this question: what if I could never sing again? Singing gave me comfort through any hard time, but during the first months of recovery, singing hurt. I had to be silenced for the first few months of surgery. I knew dysphonia would be a side effect, but not to the extent that I experienced. I felt isolated, since even my coping mechanism was silenced.

After about a month of recovery, I returned to school. Thankfully, as crazy as it was to navigate, COVID-19 was happening, so I avoided the shame of needing a school aide to hold my backpack or having to sit in a classroom away from everyone else. I could simply take my classes on Zoom. Even though I thought that I was able to sit through school, as I saw that it was online and at home, my mind was focused on my pain rather than school. That first semester, I got my first grade of a C-minus in a class. It was seventh grade advanced math, and I was so angry at myself. I thought that I set myself up for failure in life, and my family was going to be very disappointed in me. To my surprise, my parents were extremely understanding. I started to feel guilty again because both my sisters were extremely hard workers, even in middle school. I could not bring myself to try. I had been trying for the last couple of months. Trying to walk. Trying to eat. Trying to not burst out crying every time I saw my body in the mirror. That was the worst academic downfall of my life, and I knew in the back of my head it would probably haunt me for years to come. I also knew that I had to focus on recovery and my well-being and that I should not be so hard on myself given that I underwent a major surgery.

The only class I passed with a grade of A+ was my happy place, which was choir. Even though I was not able to actually sing for the first semester, I still felt the community that came with my choir friends and teachers. Choir is not just about singing, but the technique behind it. Unlike singing by yourself, choir is a team effort, and I still felt like I was on my choir’s team despite not being able to sing. Regaining my ability to sing was my biggest motivator for relearning how to do basic things. Within the eighth month, I could finally sing again, and I felt all sorts of joy! I felt joy that I was able to relearn how to be a functioning human, along with learning how to sing again better than ever before! The seventh grade end-of-year choir concert was always going to be special to me because I could really see why I loved choir and singing. It’s not the spotlight or “easy A,” it’s the camaraderie, inclusion, and togetherness you feel when singing.

After surgery, I would definitely say that my quality of life was so much better. During recovery, I discovered new interests, which in turn helped me make new friends in eighth grade when we returned to school. I also turned my academics around and was able to be inducted into our school’s National Junior Honor Society. I also made varsity and show choir that year with a solo in show choir! In high school, I had to uproot myself from Texas and move to a suburban town in California. Wherever I go, I still carry my scar, which is a reminder of what I went through, but I have started to embrace it rather than hide it. As a high schooler who is approaching 4 years out from surgery, I finally feel comfortable with how I look and I feel like I am a beautiful person, which feels good to say after such a long struggle of low self-esteem, and my scar adds to my beauty. My scar makes me feel empowered, unique, and strong. I wear it fearlessly.

I personally feel like it is so important to educate the world about scoliosis because, even though my case had no known cause, it is important to educate the world’s adolescents about scoliosis so that they are made aware of the condition. Before my diagnosis and symptoms were visible, I was denied feeling my symptoms and even got accused of faking my uneven shoulders. Scoliosis education should be taught in schools, and there needs to be destigmatization around treatment options. The world needs to be more comfortable seeing scoliotic people with their corrective braces or a large red scar on their back instead of scoliotic people feeling singled out and an “eyesore.” Preventative measures and education can help destigmatize and help people recognize early symptoms and discover how fast it is progressing, rather than ignoring potential symptoms.

The Setting Scoliosis Straight Foundation is helping to bridge the divide surrounding scoliosis stigma and non-scoliotic people. Scoliosis research is actively helping scoliotic people with new types of treatment options and the underlying cause for idiopathic scoliosis, as well as how to prevent it. I thank everyone who helped me through my scoliosis journey, from the first physical exam to my surgeon at Scottish Rite For Children, to my parents who noticed my symptoms, to my sisters who helped take my mind off of recovery, and to all the nurses during my hospital stay. Lastly, I thank myself for allowing myself to embrace my scar and feel empowered by it, along with the rest of my body and everything that goes along with it. My newly-discovered curly hair, my uniquely beautiful body, and my radiating scar on my back all make up who I am, so I choose to embrace it. My scoliosis does not define me, but I define the way I feel about my journey.