My Scoliosis Story

February 27, 2012
By , Salem, IN
At age seven I was diagnosed with severe congenital scoliosis. My spine was completely S shaped. During a simple doctor’s checkup, my doctor noticed I was slumping to one side. He told me to stand up, and noticed I was also leaning to one side, and my hips and shoulders were uneven. He had me bend over and let my arms dangle toward the floor while he further investigated why I was crooked. He told me I had scoliosis and sent me to the hospital for X-rays. It seems like I have had a million of those in my life time. After receiving the diagnosis, I remembered once when I won an award at school. I had to be photographed. I stood along the wall as I waited for the flash of the camera, but instead the photographer looked out from behind the camera and asked me to please stand up straighter. I thought I was standing straight. They kept asking and I tried my hardest to stand straighter but I couldn’t. I didn’t understand what they wanted. Finally they gave up and took the picture.

I went home from my doctors appointment scared to death of my future. Scoliosis Surgery. I thought I could be my own boss and refuse to have surgery, but of course little kids are all talk. I needed the surgery and there was no way around it.

I was scheduled to go into surgery at 7 am at Riley’s Children’s hospital in Indianapolis. I have two older sisters, and they had to stay at my grandma’s while the operation took place. The day before my surgery I remember dropping my sisters off, but still being in denial that I was about to have surgery. My parents took me to Wal-Mart to buy some last minute things to take on the ride. My dad bought me a mini gumball machine. I acted as though it was a normal night, and I was a normal little girl with no cares in my mind.

We left for the hospital at 3 am. I mostly cried on the way there, and when I wasn’t, I was sleeping. When we got there I was taken into a small room to be weighed and changed into a backless robe. It was huge on my small 8 year old body. It was just after my birthday when I had the surgery. I thought about how I felt like an old man in those huge hospital clothes. I was then lead back to another room where I was given some medication to make me sleep. I was told to lie down, relax and watch TV so I could fall asleep. I told myself I would fight to stay awake, so they couldn’t do this to me. By that time though, the reality settled into my mind, and I knew I couldn’t do anything about it. The nurse came back in and put a gas mask over my mouth and nose. That’s all I remember until I woke up.

I woke up in an elevator surrounded by beeping machines, and nurses. My parents were there and explained to me that I was going to my new room. I was in surgery for 7 hours. I was sore but on a ton of pain medication. I felt like I was upside down form so much medication.

I only remember parts of the whole week I spent in the hospital. I don’t remember the order in which they happened, but the parts I remember are very clear in my mind. My family came to visit me and brought me balloons and stuffed animals. I had a room mate named Christie, but she got to leave before me. Her parents bought me a brown teddy bear, that I named Riley. I then got a new roommate named Felisha. She also had scoliosis from severe burns and was put in a full body cast.

During my stay in the hospital my lung on my right side went completely flat, so the nurses cane in and put a mask on my face and turned on a machine to blow it back up. I felt like it was suffocating me, so I kicked and screamed until both me and my parents were in tears. My dad forced the nurse to turn off the machine. They came back to do it again the next morning. My parents weren’t in the room. I started panicking and crying out for my dad to come in to save me. He promised me he would keep them form bringing that machine to me again. I don’t know the alternative way that my lung was reflated but I constantly had two little tubes in my nose helping me breathe.

The doctors kept coming in to check my scar, which went from my belly button all the way up my side to my shoulder blades. I was told I would only have a five inch scar on my side. They would roll me over onto my ribs, which had to be broken during surgery and would cause so much more pain. I also had some sort of tube through my back that was painful to lay on.

Then came the time to let me out of the hospital. I few days before that, I was measured for a back brace. I had to wear that for 6 months. However, the mail system that was supposed to deliver my brace some how lost in on the way there. I had to stay in that awful place even longer. I was on so much medication that I couldn’t eat, but the doctors wouldn’t let me leave until I did. When I finally got my brace, I sucked it up and ate a peanut butter cookie but that made me sick. I got to leave after that anyway. I remember leaving the hospital being wheeled down the hall in a wooden chair. Every time we would stop and go again the chair would push on my back and make it hurt even more. I couldn’t hold my own weight yet so I couldn’t get up and just walk to the car.

By the time I got home, being off all the constant pain medications made me feel better enough to eat. I ate Cheetos, but could only handle a few at a time. That night I had so many visitors at my house bringing me coloring books and dolls. I was so disappointed that I couldn’t get up and play with my cousins while they visited me. All I could do was lay in my bed while every one told me to get well soon.

Soon after, school started, but I couldn’t go. I had to be home schooled for the first semester of my second grade year. I was always so lonely while my sisters were at school. But by that time I had healed enough to where I could walk and get our of bed. To pass the time I played with my new puppy, and helped my mom paint my play house green and pink.

During the time I was out of school, the elementary school got a new principal. My mother and his had many arguments about me not being in school. He called over and over trying to get me back in the classroom. “she could bring her own chair, with a cushion.” he said. Sorry sit, but at the time there was a very high risk that the metal rod on my spine would break, and the seven screws would work their way back out. Then I would be rushed back surgery. Unless you want me laying at my desk, let me recover at home, thanks.

The second semester came and I was back in class. When I got there everyone thought I was a new student. They were all whispering about me and I was sad that no one remembered me. But that was the least of the problems I faced with going back to school. There was always this one girl who would always make fun of every move I made. She’d make fun of the way I held my pencil, and other dumb things to make me feel bad about myself. Now it doesn’t seem like a big deal, but after my self esteem was already lowered, it upset me easily. I always dreaded going to school for fear of what she would say about me next. Once, the elementary school did a competition where the kids drew on brown bags to prevent drinking with SADD. Each class was in completion with each other. I was the winner in my class, and she did not like that. After that all she would do was mimic me and tell me my drawing only won because everyone felt sorry for me. She succeeded in lowering my self esteem even more.

The next few years weren’t as stressful. Once a year I had to go back to the hospital in Indianapolis for x-rays and a check up. That went on for 3 more years. I was always depressed on days we had to go, I wouldn’t speak to anyone, and I would cry every few minutes. I hated going back to the place that caused me so much personal drama. Every time we went back, my dad gave him a penny to throw in the wishing well. I always wished that I would never have to come back. Finally that wish came true in 5th grade when the doctor told me I would never get any taller. The surgery was supposed to make me 2 inches taller, but it didn’t. I was about 4 feet seven inches tall, and I still am. I cried on my mom’s side, I didn’t want to be under 5 feel for the rest of my life. I felt like I was being stuck in my second grade body. I was again, in denial about what the doctors said.

My denial didn’t help anything once again. I am now 18 years old, and still the same height as my 8 year old self. I wear the same sized shoes I wore in second grade, and have only gained about 20 pounds since then. I get laughed at and talked about every day by someone who doesn’t know my story. I will be walking in the halls and hear whispers about how I am so short. I always get questioned about how old I really am. People tell me I look 9 years old. It would upset me so much before, but now I’m less vulnerable to is. I was put on Prozac for my severe anxiety that came from my childhood drama. I would always have panic attacks in class to the point of almost passing out, all because of little things like playing a review game with the class.

I used to care so much about what people thought of me, I did everything to try to perfect myself. I would starve myself and every time I heard another whisper, I would be that much more motivated to perfect myself. My eating disorder started in 7th grade still somewhat goes on still. I don’t do it as much now, but it still crosses my mind occasionally when I feel bad about myself. Occasionally I will get upset when people say things about me, but I am a lot better than I used to be.

I recently found the picture of me where I was told to stand up straight, and now can see that the surgery saved my life. Without the surgery I would be dead by now. I would have been so bent over that my ribs would puncture my lungs and limit my breathing. I’m glad that I got the surgery, even though it has caused me so many personal problems.

Today I am a healthy 18 year old because of my surgery. Even though it runs in my family, and I had the worst case of them all, I was able to get over it. The only trace I have of my past burden is the scar and I don’t even mind it. I can’t feel my whole side around my ribs from the scar, but the surgery is a part of my life story and lets me know who I am. It made me stronger and now I have a story to tell.

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