When I tell people about having scoliosis, many question the validity, as if my condition isn’t really all that serious. If I go into all the gruesome details, I notice that many look at me differently than they did before. Some, in fact most, I think get confused about scoliosis and spinal fusion, because it’s not something I can really explain in a short conversation. So, I have found that sometimes it’s simply easier not to say too much about my scoliosis and instead, for me, it’s easier to write about it.
In all honesty, I am actually a super private person who doesn’t really like over-sharing. I know you would never guess that about me, because I put it all out there in The Curvy Spine. But I do it for two main reasons:
The first reason, and the most important, is that it’s a selfish escape. A way of processing everything that has happened and everything that is happening. Scoliosis as a condition binds me to a lifetime journey, and with it comes the physical and the emotional symptoms. For me, it’s much easier to express the emotional symptoms of my condition through writing. No one should be defined by the struggles they go through, but that does happen. I am many things, but I am not my condition. My writing is a form of expression. An outlet for the emotional symptoms that come with scoliosis, and for that reason, I write for myself.
The second reason I write about my condition is for my readers. I have people writing to me telling me their challenges, sharing their secrets, and asking me for advice. It’s the bond that we share as fellow people living with scoliosis that keeps me writing. It’s nice to know that my posts are being read, shared, liked, and used. It’s a humbling experience knowing that my writing is able to capture readers so much so that they feel the need to share their own stories with me. I look forward to the comments and the emails I receive.
The Curvy Spine is my platform to connect with others who live with the same struggles that I do daily. So, I write. I write for myself and I write for you.
6 thoughts on “Why I Write About Scoliosis”
Hi I’d just like to say I can really relate to what you are saying I had spinal fusion surgery and hate telling people about and even if I do they never under stand the pain that we go through daily
It’s true. I think it’s hard to relate to a situation you cannot connect to. What do usually say?
I am glad to see someone writing about it. I had my first surgery in 1972 when it was still experimental . At the age of 15 I made the decision to have it. I had not only curvature but rotation and it was crushing my heart a lungs. I had a 50/50 chase of survival and death by the age of 20. Thankfully one of the most renown doctors of the time lived in Atlanta. I had bone graft fusions and a Harrington rod put in from the base of my neck to my waist! I have natural birthed 2 babies and worked in high fashion retail management for 40 years until 2014. When a 3 curve bellow my waist and collapsing pelvis did me in. Thankful for an incredible neurosurgeon specializing in severe cases removed all my original hardware and built a tree from the middle of my torso and spikes down into my pelvis with a few what I call cheese graters and other gismos. He wasn’t able correct the curve much because above my waist was already fused. This fusion changed my life big time. After a year of physical therapy I was deemed unable to return to the work I loved. I would love to compare notes with others going through this too. People just don’t understand the severity of having zero mobility….
I stayed up until 3:00 reading your blog. Your story and your writing skills are both amazing.
I have taught elementary school for 34 years and I strongly believe you have written the framework for a major best selling grade 4-7 children’s book that could change lives. Please think about it.
Came across this while looking up things for my 12 yr old starting bracing this week.
I’ve thought about a lot over the years. It’s hard to get started, you know?
I’m son is currently having extensive tests done for a genetic condition and life somehow happens and gets in the way of the “plans.”
It made my day to read this email – I appreciate it so much!
I needed you today! It was today that reality hit me hard.
I am seventy. I have had two major surgeries for adult scoliosis. I had an additional surgery in 2019 to repair a broken rod and a break at L4/5 after a devastating fall. Prior to these surgeries, I had previous fusions in my neck and a decompression for cauda equine.
My spine is not straight. I walk looking at the ground.
Today I realized that nothing can be done to make me look normal or feel normal. I have new and different pain. Maybe I can get help for the pain. I will never again look good in my clothes. This is me. It sucks.
Now I must get happy and get over myself!
Thank you for your writing. It helps.