Hi! We’re Simone (pictured left) and Alyson (pictured right), two twenty-somethings navigating life in New York City. We met through our significant others and found out, completely by chance in a moment of complaining about back pain, that we not only both had Scoliosis but also had undergone the Spinal Fusion Surgery! The first thing that we did was… share x-rays. And then we shared our stories- our shared battle of recovery, the journey of acceptance, and the continued reality of monitoring pain.
This inspired us to share some stories, both having similar and uniquely different journeys, we hope to bring some light to other young females that may be facing the diagnosis of Scoliosis and in need of a spinal fusion.
When did you find out you had Scoliosis?
AM: I found out I had Scoliosis when I was 13 years old, headed to the doctors with a bad cold. The doctor listened to my breathing; a pretty standard procedure, except this time he noticed that my lungs were vibrating differently, due to a twisted rib cage. He asked me to bend over and touch my toes. He was the first to notice my Scoliosis.
SR: I was in the 5ᵗʰ grade, and it was from a routine physical with the school nurse. They check your spines with something that looks like a protractor.
What was it like being a kid with Scoliosis?
SR: The last thing you want to be at that time of your life is “different”. I spent years wearing oversized shirts and sweaters to keep my clothes from clinging to my back and exposing my uneven shoulder blades. I was also in a lot of pain. I would duck out of classes to go to the bathroom and stretch. Or cry. School chairs are so awful to sit in, scoliosis or not!
AM: Pre-surgery I wasn’t experiencing any physical pain, but the body-conscious repercussions weren’t great for a pubescent teen. Before the surgery I had a series of photos taken at the hospital, I had to strip down to my undies and stand in several different positions so they could see how everything was moving. These images were horrifying, I was disgusted by myself, I couldn’t even look at them. I was also shocked that nobody noticed how bad it was prior to the doctor. I was a competitive swimmer, 5 days a week strutting around in Speedos and NO-ONE noticed how skewed my body was!
SR: YES! I remember I’d wait until the last possible minute to take off my covers in dance class, because there’s no article of clothing more unforgiving than a leotard. A swimsuit, I guess!
AM: Exactly, this to me sums up the insecurities of such young girls going through such a majorly physically altering procedure, and the lack of support we had for the mental and emotional journeys we were embarking on. At 13 years old I was more concerned about the surgeons seeing my pubic hair then I was concerned about having my spine fused!
The Age Old Scoliosis Question: Back Brace or No Back Brace?
AM: I didn’t wear a brace before I had surgery, but I did after. I remember one girl at school walking behind me and noticing my back brace under my school dress, she turned to her friend and said “What the f*** is that!?” I ignored it at the time but it clearly upset me.
SR: Pre-surgery my doctor gave me the option. I know a lot of people don’t get that choice. I didn’t want it because it would have been too difficult to hide. And I always got the impression that a corrective surgery was inevitable.
On the subject of surgery….You were both teenagers going through major surgical operations on your spine. What were your feelings leading up to it?
SR: Couldn’t wait for it. Alyson and I have talked about the fact that we thought it was going to give us ight spines and fix all of our body hang ups. There’s a lesson here about managing expectations, for sure.
During? And what’s the Recovery Process?
AM: We never want to scare anyone when talking about the surgery. It’s an intense experience. But we had great support from our respective families. Simone was in the hospital for 7 days and then at home for 3 months. For me it was 10 days in hospital, 3 months recovering at home and 6 months wearing a back brace post-surgery. And a lifetime of feeling the discomfort.
The Spinal Fusion Surgery leaves its patients with a long thin scar down the spine. What’s your relationship with your scar?
AM: I have wanted to be proud of my scar for so long. It took a while to build a positive relationship with something that was a reminder of my negative body relationship. But, with age, maturity, and self-love I feel like I have embraced it.
SR: I have hated my scar for so long. But 10 years of hating something can give you some perspective. Which is where I am now- learning to embrace it! What do you want young adults with Scoliosis to know
AM: I grew so much from my surgery. I even got an extra inch of height- that was the best bit! I feel proud to show my scar off and share my story. I want people to know this- having Scoliosis hasn’t ever stopped me from achieving anything. If anything, it’s added to my story and my goals in a positive way.
SR: We’re not broken, we’re just bent. Having scoliosis, especially as a woman, teaches you to be responsible for your own confidence; To set your own recovery pace, and reject any other standard by which to measure yourself. Nothing can break you unless you let it, especially those of us with Titanium spines!