Living with Scoliosis

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I had gone to a general practitioner for a cold or a cough. He listened to my heart beat with his stethoscope and told me to breathe in and out deeply. Placing his hand on my back, he looked up at my mother and said, “Did you know that she has scoliosis?”

As it turned out, neither my mother nor anyone else knew that I had scoliosis.  So we made an appointment with an orthopedic surgeon at St. Dominic’s Hospital in Jackson, MS. There, I took x-rays. The doctor first told me that my bones were completely finished growing, as proven by the x-ray which illustrated that the growth plates in my hands were completely closed. Imagine me, at 15 years of age and a short 5 feet 2 inches tall hearing that I am completely finished growing. To me, that was devastating news, but little did I know that worse news was yet to come.

I was diagnosed with severe scoliosis, which is a curvature of the spine. Unlike some who have scoliosis, I was blessed with a curve at the top and bottom of my spine, which looked like an inverted S on the X-ray. Because both degrees of the curve are pretty severe, they compensate one another, and I am not severely hunched over. This compensation made it very difficult for the average person to notice the flaw.

Because I was finished growing, there was no way to train the bone to grow straight. Had we noticed that my spine was growing incorrectly at a younger age, I could have worn back braces to help the spine grow in a straighter path. The surgeon at St. Dominic’s recommended that I have surgery to correct the scoliosis. He explained that attaching rods to my spine would stretch it out some, though it would not fully eradicate the problem.

Immediately, I was against the whole idea. After all, I felt fine. So what if I had a crooked spine? It didn’t seem to affect me. Plus, the doctor said that sometimes the curves get worse, and sometimes they don’t. He also said that sometimes the curves cause severe back pain, breathing problems, and irregular heartbeats, but sometimes they don’t. I was convinced that I would be in the category of people who wouldn’t really be affected by scoliosis.

My mother disagreed, and she even scheduled the surgery. In the end, my father and grandmother were on my side of the fence as far as the argument went, and my mother canceled the surgery. In the few times we’ve talked about the situation since that time, she always cries and feels guilty for not making me have the surgery. I detest hearing her pain, and I always assure her that this disability has helped me in my development. I am a strong, independent woman for many reasons, but having scoliosis has helped play a part in that development.

So how has scoliosis affected me? I am still 5’2” though I am supposed to be anywhere from 5’9” to 5’11.” In essence, I am a tall person who has been scrunched down into a shorter version of myself. I do have back pain. However, I’ve become accustomed to it, which may sound odd to people who haven’t had to manage pain. It’s always with me, but I hardly even notice it anymore. Can you get used to pain? Of course you can. It’s just like a blind person becoming accustomed to not seeing. After a while, that’s all you know, and it becomes the norm. When I awake in the morning, I take a deep breath, and pain shoots down my spine and spreads out throughout my back. It’s the transition from not processing the pain when I’m asleep to waking my brain, and once again having full cognition. That moment of clarity is the worst part of the day.

When I met the man who is now my husband, he convinced me that it’s not too late to have scoliosis surgery, though I was doubtful. From my research, I knew that the surgery is much more effective in younger patients because our bones stiffen with age, and being older, my spinal cord will be less likely to bend and stretch into a straighter position.

However, I still made an appointment with Campbell’s Medical Clinic in Memphis, TN. I was 26 years old. They took new x-rays, and I met with a doctor. The doctor, who had no bedside manner, proceeded to tell me that scoliosis was a “juvenile condition” and that I was an idiot for not having the surgery when I was teenager. He also said that there was no way he’d operate on me because the surgery would be so bad that he didn’t know if I’d ‘make it through it.’ “You’d have bolts and screws from the top of your neck, all the way to the bottom of your butt,” he told me. He said that he figured I was in a lot of pain, and he offered to give me cortisone shots. He then looked at Craig, who was merely my boyfriend at the time, smiled at him, and said, “Hey buddy. Nobody ever died of back pain.” I thought Craig was going to punch him in the face. Luckily, he didn’t. The good news was that the degrees of my curves were exactly the same as they were when I was in high school. I still had severe scoliosis, but at least it wasn’t any worse.

So I missed my window of opportunity, and now I am an adult living with a “juvenile condition.” I manage my condition well. The left side of my back is completely smooth and taught, but I have a skin fold on the right side of my back that looks like a “fat roll” to most people. I will never have a flat, sculpted belly like a Victoria’s Secret model. I’ll always have to manage some degree of pain. There’s less than an inch of space between my ribs and my hip bones, so I have no waist. Buying clothes is an atrocious venture because nothing really fits me correctly. Because my top curve puts extra pressure on my heart, I have a mitral valve prolapse. That means that I have to take lots of antibiotics before I have surgery, dental work, or any procedure that will involve blood so that the valves of my heart will not get infected.

Am I still beautiful? You bet I am. Between 16 and 31, my body changed even though my spinal cord did not. And for so many years in that period, I was ashamed of my body. It wasn’t like everyone else’s. And it never will be. When I met Craig, he was a personal trainer. He loved me almost immediately, and he did and will always think I’m beautiful. However, as a personal trainer and a physical therapist, he knew that I could use exercise to manage my back pain.  So he began training me. It didn’t take long for me to get hooked.

Today, I’m still 5’2.” I weighed last night, and my weight is up to 156 pounds, which nearly puts me in the obese category based on those little charts plastered on the walls of gyms and doctors’ offices. I am not obese, though. I am strong. I am very strong. I can lift more weight than most of my guy friends. I am very muscular, and I am very beautiful. I don’t really fit into the stereotypical label of “beautiful woman” as defined by the media or fashion industries, but that suits me just fine. I am strong, both inside and out. I am powerful, both internally and externally, and I am both physically and emotionally stunning.

Would my life be easier if I didn’t have scoliosis? Of course it would be, but living with scoliosis makes me a better person. I’m more efficient and compassionate because of it. A disability isn’t a death sentence. It’s a window of opportunity for greater growth.


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