Growing Up Gimpy: My Scoliosis Story

I thought I’d cap off bullying awareness week by discussing something that’s tangentially related to bullying: My name is Hattie, and I have scoliosis.

As is the norm, my doctors noticed my spine was doing the curvy thing when I was about 12 and in the midst of a catastrophic growth spurt. Absolutely everyone treated this diagnosis, and its description to me, as if it were leprosy or at LEAST flesh-eating bacteria. To this day I don’t understand why scoliosis is so feared and rarely admitted. It’s a (somewhat?) hereditary curvature of the spine. It is not contagious nor is it caused by one of those sinful, dirty “lifestyles” the nice people on the TV keep yapping about.

Do you even remember those school scoliosis screenings, which were cloaked in more secrecy, fear and shame than even Lice Check Day? By the time I was a jaded high schooler, on Scoliosis Screening Day I would just loudly announce “You don’t have to check me, I’m already infected,” and my school chums would scoot away from me with their eyes wide with horror.

So what’s it like being one of the infected? (And yes, I’m on track to make some kind of zombie reference in every post. Yes, I am comfortable with that) Not particularly fun. I was just the perfect age during my treatment: old enough to KNOW what was happening but too young to really understand it.

Artist's Rendering of Scoliosis-Infected

I remember getting plastered (not the fun way) for my back brace. I remember wearing said brace from the moment I got home from school until I got in the shower the next morning. I remember the long, tight t-shirts I wore under the brace to absorb the sweat. I remember screaming into my pillow with frustration, unable to get comfortable in bed because my entire torso was frozen in place (and I had headgear on my face. I was a cyborg). One thing I don’t remember was the decision for me not to wear the brace to school. In hindsight, my mom and my doctor probably decided I had enough going against me that I didn’t need one more thing to be teased about.*

My brace was plastic, with several Velcro straps down the front. Kind of like Tevas, but for your torso. And with more social stigma! I hid it in the closet, and only once did one of my friends find it when we were in my room. I tried a tactic that I would perfect in my later years: laughing it off and pretending it wasn’t a big deal. As I was still a noob, it failed.

So, did the brace work? Yes, but you may not realize that (unlike teeth braces) they generally don’t fix the curve; they just keep it from getting worse as your bones continue to develop. I’m stuck with this curvy back for life, and it kind of sucks. A seat with a hard back is uncomfortable, because one side of my ribcage protrudes further back, so there’s uneven pressure. Backless seats or stools are the worst; the muscles in my back and torso are being worked differently when I sit up without support, and I get tired or sore easily. Standing up for too long also starts hurting for the same reason.

Also, you can see it. My shoulders are different heights, and the shoulder on the “bad side” curves forward a lot more. I know most people don’t notice it, but I do. And having this problem, even though I’ve had it for as long as I can remember, is just so frustrating. Even though it’s not possible, sometimes feels like I KNOW what having a straight back feels like, and if I just stretch upward or lean back it’ll just pop into place and that’ll be that.

But it’s not to be. I’m not normal. And while this isn’t one of those cute, charming Manic Pixie Dream Girl quirks, it’s still something that makes up who I am. I’m one of the infected. I have a humpback. My name is Hattie, and I have scoliosis.

*What did I have going against me, you ask? Pretty much the Nerdy Perfect Storm: frizzy, uncontrollable hair, thick glasses, braces (with rubber bands! Plus the nightly headgear), orthotics in my shoes, overall mousy appearance, acne.

5 replies on “Growing Up Gimpy: My Scoliosis Story”

Late to the party! But hey. Thank you Hattie, for being so candid about your scoliosis. I had it too, as a young’un. From the age of 9 to 13, I did the 23-hours-a-day brace wearings. I had one for night, which was huge and blue, and one for day, which was smaller and white, with ‘ventilation holes’ drilled in the front of it. Living in Florida made this all the more fun. Realizing that the braces were not helping – at all – my doctors recommended spinal fusion surgery for me, and I jumped at the chance. My curvatures are still not perfect, but they are much improved, and now, 11 year later, I all but forget that my spine is a giant fused column of titanium and bone grafts. I still have some surface imperfections and unevenness – one side of my rib cage is more prominent, as well as the lower back muscles on the opposite side of my spine – but all in all I’m really proud of my bad-ass scar and glad to have made the right decision for me. :D

Not that I’m a fan of 90’s It Girl, Chloe Sevigny, but she mentioned in a recent “Fresh Air” interview she has scoliosis. It wasn’t treated either. She’s very self-conscious and hates watching her body on screen, imagines a creaking door sound track to accompany her movements. So be aware haters, it isn’t just Chloe’s hipster cool that affects her poses.

Maybe it’s because pretty much everyone had scoliosis at my school, but it wasn’t a bit thing where I grew up. Makes me wonder what kinds of other things are like that – a huge deal in one school, and no big thing in another.

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