Through My Eyes: A Scoliosis Story

scoliosis surgery death sentence
Eventually my doctor and the surgical resident came in and had me sign what was basically a death certificate
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It was eleven forty-two; I was lying in a foreign bed, in a foreign city just six hours until I faced my ultimate fear. My stomach was empty, part of the pre-operation process. Before I forced myself to sleep, I knew there was one last thing I had to do. It was a hard thing for me to think much less utter, so I did what I thought would be closest to what I actually meant and typed, “I just want you to know no matter what I love you so much.”

That was the last message I typed to my boyfriend before surgery. I knew he would understand, I could never say anything to my family, it was too much of a risk, a risk of jinxing myself. That night, and many nights before, I spent knocking on wood to prevent the jinxing, and I guess it paid off. Though, even before all the knocks on wood or telling myself to be strong I knew from previous experience that whatever happened on that operation table, was meant to happen, regardless of what I thought would be best.

Right from the beginning it was a hard concept to fathom. Death. It was and still is my biggest fear. It first became real when my doctor told me I had to have surgery. I was at my annual doctor’s appointment for my Left-sided Hemiplegia, a disability I was born with. I was thirteen years old. I had done the routine dozens of times, bend down touch your toes, but this time was different. This time my doctor noticed a protrusion on my back, and from the moment he said, “x-ray” everything changed.

Even going into x-ray I was nervous, I couldn’t stop thinking, “What is going on?” Then the results came back, indicating I had a curve in my spine of 53 degrees. Scoliosis. It was not a foreign term, a girl in my school recently had to wear a brace because of it. So of course my initial thoughts were, “Well, I guess I will just have to wear a brace, no biggy.” Though it was a big deal, the next words that would come out of my doctor’s mouth would be the “deal.” “Your growth plates are closed, so…”—wait, what? What does that even mean? Apparently it meant that I was done growing, so I could be braced but ultimately it probably wouldn’t help. The next option he said was not what I expected. “Eventually in order to fully stop and or prevent further progression of the curve you will need surgery.”

From that moment on I said nothing, absolutely nothing. It was the only thing holding me back from crying. I blocked everything out, it was only me and my thoughts, “not waking up, death, paralysis” all of this ran through my head as he spoke. I remained calm, I stayed strong until I was at last within the walls of the car, then I let everything go.

This wasn’t my first round of surgery talk. When I was young, like five or so, they talked of surgery on my leg to lengthen it, but at some point it was decided I could live without surgery. Even then, the first thing I thought was “they are going to put me asleep and I am never going to wake up.” I forgot all about this, until that late spring day when life once again, wasn’t so perfect.

My mom told me early on, “God doesn’t give you what you are not strong enough to handle.” It didn’t matter; none of it mattered because I had bad luck. That’s what I believed for the next three years, which during this time my curve increased to 58 degrees. Surgery looming closer and closer….

During these three years, I had pain, but I did not let it stop me, I never have. I continued to do what I loved, I played sports, I even hiked Hidden Canyon in Zion National Park and Gold Strike Canyon in Las Vegas, Nevada on the Science Field Trip. These hikes and many others tested my limits, but I persevered. Despite these ambitions, there was one thing that kept me down. My self-esteem and the only way to solve this was surgery.

So, I began to meet with different doctors getting opinions and advice, finally I was referred to Shriner’s Hospitals for Children in Spokane, Washington. My first appointment at Shriners was a long one. We first went over the basic conversation that I had heard over the years, and by the end I was being scheduled for surgery.

It was six o’clock in the morning. I was sitting in what will be my home for the next week. My emotions were everywhere, different people came in and out of the room doing and saying different things. Eventually my doctor and the surgical resident came in and had me sign what was basically a death certificate. It went over all the various complications of surgery, including paralysis, death, and blood loss. There was one thing that was reassuring, the Cell Saver. This system would return all blood from the operation back to me. After signing, it was time to face the inevitable.

I hugged my mom, dad, and sister Saige, before lying down on a stretcher. I stuttered “I love you” to all of them, trying my hardest to hold back the tears that were soon to fall down my face. Once in the pre-operation room, my parents sat next to me (my sister had to wait outside), and I was given funny juice. Soon the funny juice took effect and I faded away as the game of “Where’s Waldo” filled my mind.

Despite everything, those four hours on the operation table ended up being the best sleep of my life. It wasn’t an abrupt waking, it was slow and smooth. I heard the murmur of voices, they were taking and moving things off of me. Finally, they asked me questions of which I can’t recall now, I was still lost in a dreamy state. At some point I was brought back to the room that I had been in just a few hours before, only this time everything was different.

There was this weight. My whole upper body was a million pounds. The whole weight of the world was not on my shoulders but was literally on my back. Then there was the pain, which was probably worse than I complained about it being. All I do know is that it was there constantly and every time it got too extreme, I pressed my life saver button. It was not actually a life saver but it did release more of the morphine through the epidural in my back. I also had a medication I took every four hours. As for my family they were right there with me.

There are no words to completely describe what happened over the next week in that hospital, but it was essentially hell. The pain, nausea, dizziness, and the constant feeling of needing to be asleep left what occurred during those days a faint memory. There were times when I was more conscious than others, but the pain was still overpowering.

When I was told I could go home I never felt so relieved, but I did not realize what still lay ahead of me. The ride home was one of the worst parts of the whole entire surgery process. It required riding in a car for five or more hours, with only ice packs, and medication to ease my pain. Originally I didn’t think I would make it, no position was comfortable, but eventually my mom and I came to the same conclusion. Just drive. So that’s what we did and finally I was back to the place that I felt like I hadn’t seen in five hundred days—home. Here my dad, grandma, and sister Saige waited.

For the next month, I was secluded to only my house. I was essentially a prisoner , except I needed help doing literally EVERYTHING. Anything that one could imagine, I needed assistance with, and this became the new hardest part. I felt useless, and on top of that I could never be alone. Someone was always there making sure I was okay, or wondering if I needed anything, but the only thing I needed was to escape, escape from my house, even escape from myself.

The only thing that allowed me to feel less of a prison inmate was the time Lucas, my boyfriend came over. He entertained me with movies, conversations, and was someone I could go on walks with.  He was there whenever he could be, before work or even after, he kept me up on all the latest drama which was a good change from the silence.

Family and friends continued to send care packages, including magazines, coloring books, books, ice cream, and other stuff. No words could ever describe how much I appreciate the caring, love, and patience they had for me all those days, it meant the world to me.

My recovery has been slow and is still ongoing. As I become more of myself again, I find more and more things that I love about myself. My surgery has shed so much light. Now I am a better, happier, and more carefree person than I was before surgery. I would not trade my surgery for the world. Surgery was inevitable, and because of it I was afraid. I had to face the fear that I thought I would never overcome. It was all about turning my greatest weakness into my greatest strength, and I did. 

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