Colleen's Story

When I was little, I used to love Disney movies. (OK, so I still do.) And one of those movies I loved was Aladdin. I used to think what I would do if I had three wishes. Well, that’s not totally true—I didn’t really have to do much thinking. My number one wish would be to have a perfect back.

You see, I have scoliosis, which is really just a fancy name for curvature of the spine. Doctors have told me that no one is perfectly straight, but when your spine is around 10 degrees off-center, that’s when doctors start to see if you need treatment.

Not everybody who has scoliosis has the same type of curve or the same experience. There are two different types of curves—an S curve and a C curve. named that way because of the shape of your spine. I have more of a backward S—my spine goes to the right and then curves around to the left before going back to the middle again.

When I was growing up, my teachers would always tell the class to “sit up straight” (particularly in band where your posture helps your breath support), and I wanted to scream out “I am sitting up straight!” or “This is the best I can do!” It’s maddening to be told to do something when it doesn’t matter how hard you wish it, you physically can’t do it. I think some people see others who don’t sit up straight as lazy but that’s not true at all. Sometimes there’s another explanation.

My doctor diagnosed me with scoliosis when I was nine. By the time I was eleven, my curve was about 25 degrees, so my doctor referred me to an orthopedic specialist. He fitted me for a brace to help stabilize my curve.

I hated my brace. It wasn’t up to my neck like they apparently used to be, but it was still a bulky plastic thing that went from under my arms to my hips and Velcroed shut in the back. I had to wear T-shirts or tank tops underneath it to keep from chafing my skin, and I could only be out of it one hour a day —for bathing, swimming, and exercising. I hated the fact that even though I tried to cover it up, you could still see my T-shirt under my other shirts. White shirts—forget it. I wanted to feel attractive. I felt anything but. All my clothes had to be big on me because I had to wear everything in layers. But I couldn’t always disguise the brace completely. I remember going to my first dance, and this guy had his hands on my waist, but it wasn’t even like he had his hands on my waist because his hands were touching the brace, not me. I remember him saying, “So, you have a brace, huh?”

I was supposed to wear the brace for 23 hours a day, but I wore it more like 23 ½. I kept thinking that if I wore it and had it Velcroed as tight as it could go, then I’d be straight, or at least, straighter. But it didn’t work. At the end of a year and a half, my curve had progressed to 59 degrees. My doctor was concerned that if I didn’t have surgery to stabilize the curve, my curve would progress so much that I could be hunched over—permanently. And so when I was twelve, I had surgery to fuse the upper third of my spine to bone from my hip.

You’d think the night before a day-long surgical procedure where one of the potential outcomes is death would be frightening or at least a bit scary, but the night before my surgery was actually one of the most memorable nights of my life. That’s because for the first night in a year and a half, I got to sleep without my brace. And that’s the last night I remember not being in any kind of pain.

I’ve finished high school now and I don’t know what it’s like not to be in pain. For months after the surgery people would ask, “How’s your back?” I’d say, “OK,” because really, what was I supposed to say? I like to compare it to when people ask, “How are you?” and they know you’re going to say, “Fine. Good. OK.” The truth is, I don’t remember when it hasn’t hurt.

I’ve tried everything—pills, acupuncture, massage, herbal medications, these Chinese strips that heat up your back, a chiropractor, a hot tub, heating pads, ice, and physical therapy. If anything works, it’s only temporary. I had additional surgery when I was nineteen to remove some of the screws and other hardware that I could feel rubbing up against my skin. The pain in that spot did go away, but now the pain has dropped down to my lower back and hips. I feel like I imagine someone in their seventies to feel.

And even with the pain of the surgery and the feeling of discomfort I experienced with the brace, I’m still not straight. My curve is just as bad as it was before the surgery, and now the lower part of my curve has progressed into a greater curve and I have pretty much constant pain in my lower back and hips. My shoulders are crooked and my hips don’t match up. One leg is longer than the other. I can’t put my hands at my side because one hand hits my hip because it’s in the way. I hate going shopping because whatever I try on, I still look crooked. Some people tell me they can’t tell, but I know they can. I have a few friends who are honest with me and will tell me what clothes don’t look good.

Last winter I was in a play. The director told me not to lean, to sit up straight. I wanted to cry because I couldn’t. And just today a new coworker asked me why I was hunched over all the time. So I told him what I’ve just told you—that I have scoliosis and that I’m hunched over all the time because that’s the way my body is.

During times like this, I get really depressed and down on myself, but then I think about all that I’ve done to fight through my scoliosis. I became the first person in my school’s history to earn a varsity jacket without playing a sport. I earned my credits keeping score, running the clock, and announcing. I did color commentary on the radio for both football and basketball, and had my own radio show when I was sixteen. I won a reporting award in college and a college scholarship. I’ve danced in community theater productions. I’ve given sermons in church.

I also think about the way that others have to live. I think about the people who are in nursing homes who stare at white walls all day because no one comes to see them. I think about the people who feel like they can’t be who they are and have the relationships they want to have because they feel their parents will disown them. I think about the people who have to practice their religion in private for fear of losing their lives. I think about people who lost everything in Hurricane Katrina and I think what they must be wishing for. And then I think how fortunate I am to have a wonderful, loving family, a good job, great friends, and a perfect dog. (Well, she thinks she’s perfect anyway.) And suddenly my pain and my ugly back don’t matter as much. Because I may be living with scoliosis, but at least I’m living. And that’s something to be thankful for.

—Colleen