Let It Go: The 25-Year Evolution of a Fused Scoliosis Queen

Twenty-five years after spinal fusion surgery, I’ve learned that being fused doesn’t limit your life—it shapes it.

We recently introduced our toddler to Frozen. 

Which means “Let it Go” (lovingly referred to as “piano Elsa”) plays on loop in the car, in our apartment, and consequently in my head at any given hour of the day. I didn’t expect a Disney power ballad to hit quite so close to home. After listening to it for the umpteenth time, I realized I’ve been living my own version of that song for the better part of two-and-a-half decades.

Two weeks ago marked the silver anniversary of my spinal fusion. Twenty-five years of stainless steel rods holding me upright. Twenty-five years of learning (and re-learning) what my body is capable of. Twenty-five years of wearing scar-revealing clothing with pride.

And the more I listen to lyrics—the isolation, the freedom, breaking through it all—the more I see the parallels woven through my own scoliosis story. 

A Kingdom of Isolation…and it Looks like I’m the Queen

I was the only person I knew who had scoliosis and underwent corrective surgery. I didn’t necessarily feel isolated; I felt more like a novelty. Showing my scar and x-ray card became a party trick; a conversation starter for a shy teenager on the cusp of adulthood.

Ignorance is bliss, especially when you’re young. I say this without a hint of disdain or sarcasm. I didn’t know what I didn’t know. If my back physically looked different, I was unaware. I knew that I had scoliosis and a 50-degree curve in my spine, that’s all. Pain was non-existent. I was a tall, large-tee-shirt-wearing middle schooler with flare jeans a few inches too short (because all jeans were one length back in the late 90s and damn were they awful); who would see my back anyway? Also who would care?

The most I actively hid my scoliosis was when I wore a back brace in 8th grade. I’d already stopped growing, but it was recommended I try bracing before considering surgery. Let’s just say I embraced that idea (pun intended), especially since I got to shop for new clothes; all a few sizes larger to accommodate my brace. I remember moving about my little world just fine, save the occasional friend who’d knock on my midsection in jest. My mode of self-preservation was to wrap my arms around myself in an attempt to distract from what was happening beneath (Conceal, don’t feel, don’t let them know). Sometimes I still find myself subconsciously doing that. Muscle memory is strong.

But there comes a time when you have to decide what you’re capable of—and if I’ve learned anything over the last 25 years, it’s that you will never know until you try.

It’s Time to See What I Can Do

Twenty-five years of living with a spinal fusion and even more years of carrying the (uneven) weight of severe scoliosis has not been without its challenges. I almost wrote “burdens” but that is not accurate; scoliosis has never been that heavy for me, despite having a 52-degree curve and needing surgery. 

Narratives of anger and shame around scoliosis and spinal fusion abound on social media, in particular the physical and mental scars it leaves in its wake. It’s understandable. This condition creates unique havoc in every person it embodies, which adds a layer of complexity to how it is experienced. I’ve learned how to live with it instead of trying to live against it; more simply, I leaned into it all. The energy expended from negative thinking would have been too great a burden to bear, so I owned my narrative—metal rods be damned, I didn’t let my scoliosis or spinal fusion stop me from doing anything!

The first real test of my physical limits and mental strength came five years post-op when I began the Walt Disney World College Program and worked as a character performer. It’s a physically-taxing role, especially as your body works to gets acclimated to the heat and the weight of the costumes—and the sweat, oh my goodness, the sweat! During the first week of training, I started questioning everything: could I physically do this?

Did it feel hard? Yes. Was it uncomfortable? Damn right it was. Did I feel pain? No, I did not.

That last question is important. While it was physically brutal at first, I had to remind myself that my fellow performers were all gassed after tossing beach balls to each other while moving slowly in a circle too; I wasn’t the only one. (On a related note: Eeyore and beach balls don’t mix.)

I had two choices: I could quit (the easy choice) or I could try (the arguably harder, but more fun choice).

I chose the latter.

It’s time to see what I can do
To test the limits and break through
No right, no wrong, no rules for me
I’m free

I was on the DCP for 5 months straight and then continued working seasonally for the next 6 years. Just like how my body adapted to new hardware after surgery, it also adapted to the new toasty, sweaty environment it suddenly found itself in. Sure, there were 12-hour days where I clocked out absolutely sore AF (the Buzz Lightyear costume is no joke), but I wouldn’t trade the experience for anything (And the fears that once controlled me can’t get to me at all).

The DCP instilled a confidence in me unlike anything I’d experienced up until that point. It was the first time I was living on my own, thousands of miles away from home. My only job that semester was to show up to work on-time (ok, early…I was so scared of getting reprimanded), do my absolute best, and give guests as magical an experience as I could. What a dream job!

No one I worked with at Disney knew about my spinal fusion, and that’s just how I intended it. Not because I was embarrassed by it or ashamed, but because it didn’t matter. Despite my initial fears, my body adapted. The rods didn’t define how I performed, I did.

And I’ll Rise Like the Break of Dawn

There’s an unshakable confidence that stems from conquering something you once questioned. Over twenty-five years, I’ve learned to let go of the unspoken fear that my spine would define my limits, let go of any self-consciousness about my scar, and let go of worrying about the unknown. The act of letting it go isn’t pretending things didn’t happen; it’s about growing into who you are because of it.

What I’ve honed over the years is strength—the quiet, steady kind that adapts, endures, and keeps moving forward with determination. But perhaps most of all, it’s all made me brave enough to try new things.

I am stronger than the diagnosis I was given at thirteen. Over twenty-five years, I’ve run marathons in this fused body. I’ve trained it, trusted it, grown and delivered a baby in it, and now carry a toddler like it was built for exactly this.

Fused does not mean fragile. 

And if there’s one thing I know after a quarter century of living this bionic life, it’s this: sometimes the thing that sets you apart is the very thing that crowns you.