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Patient Stories

Simone R

Hi! My name is Simone, and I have Scoliosis. It is not life threatening, and it’s not contagious so don’t worry. It just means that my spine is curved, which can cause me a lot of discomfort, some pain, and a little wardrobe hassle every now and then.

From the minute I was diagnosed in elementary school, Scoliosis has been a huge part of my life. Scoliosis for me has been a daily struggle with pain and a long term hit to my self-esteem that I still find myself wrestling with. But as I approach the 10-year anniversary of my Spinal Fusion surgery, I am determined to redirect my Scoliosis narrative with more positivity and grace- for myself and for others.

For most of my teenage years – you know, the awkward, formative ones- I dreaded being “found out”. Because 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 would duck out of classes to go to the bathroom and stretch. Or cry. Because heaven forbid we provide anything ergonomically correct for students. 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. And I dismissed the suggestion of a back brace, because it would have been too difficult to conceal.
Besides, the need for corrective surgery seemed inevitable- and I secretly couldn’t wait for it.

There’s a lesson here about managing expectations that I’ll unpack some other day. That surgery I looked forward to as my ticket to a pain free, perfectly even back left me with 1 blood transfusion, 1 titanium rod, 3 screws, and a another physical and psychological challenge to navigate: a 12 inch scar, uncomfortable to look at and unnerving to touch.

I will be honest- I hated my scar for so long. But 10 years of hating something can give you some perspective.

They say that scars are tattoos with better stories, and I’ve finally come to realize that the story my scar tells is uniquely beautiful.

It’s a story of growth, both with the whole inch I gained post-op and the realization that even with surgery my scoliosis couldn’t be erased, only embraced. What I could erased was the notion of perfection as the standard of beauty.

The story of a mother so diligent, that she put her life on hold for 10 weeks to take on the role of around the clock nurse to ensure all the stitches healed properly.

This story’s got intersectionality, too! It’s evident in the keloid- such a susceptible form of scarring for Black people– that makes up the final inch of my incision.

Thanks to the support of other beautiful women who have struggled with their Scoliosis, I have a new appreciation for this story of mine. I am committed to re-defining the way I think of my Scoliosis and my scar. I am committed to sharing my story with young girls so that they can more quickly see what took me over a decade to learn: To be responsible for your own confidence; To set your own recovery pace, and reject any other standard by which to measure yourself; That nothing can break you unless you let it.

I’m not broken, I’m just bent. That’s Scoliosis. I want people to know what that’s like- physically and psychologically. I want my fellow curve-y friends to know they’re not alone. That we are Titanium.

By Grace, with Grit,
Simone

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