My experience with scoliosis

From The Orange County Register

By Alison Glander/Staff Writer

My 100-pound frame underwent so much trauma when doctors put two titanium rods and 19 pins in my spine to fuse 10 vertebrae.

After the surgery, consumed by pain, I thought, “I was so unprepared for this.” I felt as though my parents had deceived me. They didn’t warn me about how bad it would be.

Nobody had.

Looking back, I understand that if they had told me the truth, I wouldn’t have walked into CHOC Hospital in Orange that day.

I am 21 now, but my journey with scoliosis, an abnormal curvature of the spine, began when I was 13.

Surprisingly, my scoliosis was not detected in the testing I went through in middle school. I don’t know how they missed a curvature near 50 degrees, but they did. For comparison, a curve up to 10 degrees is natural in the human body.

Growing up, I was never popular in school. I never excelled at sports. I had a mouthful of braces and wore a training bra. Not only was I awkward, but I was unsure of myself. I was already struggling enough as it was – why did scoliosis have to be added to the mix?

I wore a back brace throughout middle school and endured many sleepless nights. Kids who found out called me names like “cripple.” I was mortified.

But the brace seemed to be helping.

When I was 16, however, I got a grim diagnosis. My curve had progressed drastically and I needed surgery or I ran the risk of ending up in a wheelchair unable to breathe.

At that age, it was hard for me to put things in perspective. My parents tried to make me realize that other kids had it worse, but I didn’t listen. “‘There’s always someone who has it worse than you,’ I thought, ‘but there are always people that have it better too.’”

I went to the hospital thinking I would be up and at ’em in a week … two tops. I was a healthy 16-year-old dancing at a pre-professional level, and I would be fine.

Fast-forward through a six-hour surgery. Waking up, I remember being in more pain than I can describe, not able to move my body. My throat was dry from a breathing tube and my eyes were too heavy to open.

Post-op, not only did my body change but so did my dreams. Previously hoping to make my living as a dancer, I could barely touch my toes. I couldn’t walk up the stairs, and don’t even get me started on sitting up. On one early attempt, I remember positioning myself in a chair and starting a timer saying, “OK, I will sit up for two minutes.” I made it to a minute and seven seconds and started crying.

It’s now been five years, and I finally feel like I don’t have a foreign object in my body.

I’ve come across people that have understood what I’ve been through, and their supportive words have done wonders for my self-esteem. I made it into the selective dance program at my university and have been able to keep up with the rigors of the program.

But I’ve also had my share of lows. From the outside, I appear able-bodied: young, healthy and built like a dancer. But in reality, after a long week, I can barely lean over to paint my toes. And I sure can’t dance for a living.

For the most part, people don’t understand what it’s like, and that frustrated me at the beginning. I tried to remind myself that I needed to seek reassurance from within.

But when I went through it all, it was at a time when fitting in was crucial. Young girls are under enough stress with braces, breasts and boys, and scoliosis doesn’t help the mix.

Now that I’m older, I still don’t have many friends at school and am still consumed by guys and breasts (or lack thereof). I’m still scared about my future and where my life will take me. And I still have a lot of growing up to do.

Things change, people change and life is unpredictable. But it isn’t the end of the world – things will sort themselves out, just like my journey with scoliosis did.