Scoliosis: My Story

As I lay in my room, writing my story for the first time for everyone to read, I’m suddenly unsure of what to say. I find difficulty in talking about my struggles, but I think writing about this specific story could help others, or at least inform them of a condition that is seemingly invisible, unless you have it.

Scoliosis is a curvature of the spine that can be severe or minor, painful or painless, dangerous or completely harmless. It’s different for everyone and though I wish I was the latter of all these options, I didn’t get so lucky. My struggle with scoliosis began when I was 16, though I always had a minor curve, it hit a wall around this time for reasons that doctors cannot explain. They thought it would stop when I was 18 and I’d be able to carry on my life without a second thought about it, but they were wrong.

The summer before my freshman year of college, I had to see a spine surgeon. He told me things would be fine, my spine may continue to curve and I can get a spinal fusion to fix it but I didn’t have to. At this time, I had pain, but I was able to live with it. Little did I know that I would be back in a different surgeon’s room, rattled with pain, bags under my eyes from discomfort that led to lack of sleep and fear for my future about 6 months later.

“You’re going to need surgery. You don’t have to do it now, but if you don’t get it down the road, your spine could go over a 70-degree curve and you’ll lose room for your heart and lungs. It’s very dangerous,” my surgeon said something to this effect as I looked at my X-rays crying uncontrollably.

I was at a 54-degree curve. It was only a matter of time before this could happen and the pain was already borderline unbearable; it would only get worse. I remember looking at my mom, who was also in tears and my dad who had this look of concentration that I was familiar with whenever he had to make a serious decision.

A spinal fusion is the biggest surgery you can get on the human body. The recovery takes a year and it’s very expensive. I suddenly grew distraught. Here I was, barely 19 years old, having to consider if I needed back surgery or if I should risk waiting and nearly dying from a lack of space for my vital organs.

It was a long drive home. I was scared and I could feel that my parents were too as they weighed all the options. I asked God why this was happening to me and why I had to put my family through it all. I prayed to him, asking him to let me be okay.

We scheduled the surgery a little while later. I felt sick as my mom told me the date would be May 18th. I was scared. I wanted the surgery, hell, it would fix my pain and insecurities. I didn’t want uneven shoulders and hips that showed through the clothes I wore anymore. I didn’t want to be in so much pain that I couldn’t lift a textbook anymore. I didn’t want to continue full time college schedules on 3 to 4 hours of sleep. I just didn’t want it to go wrong, that’s what I feared. I had never had surgery, ever. This was going to be my first one and it was huge.

As the fall turned to spring, my condition had only gotten worse. I stopped wearing anything but plain clothes in hopes no one would see my one protruding shoulder blade or my uneven shoulders and hips. I was so nervous, thinking that everyone was eyeing me because I looked crooked, or that I couldn’t even carry my laptop to class because it felt like I was going to break in half. There were too many nights where I cried in my bed, just dying to get comfortable long enough to fall asleep, even if I’d be up in an hour crying in pain again. I felt so hopeless in the last 2 or 3 months before my surgery. This condition that started out as a very minor thing turned into something that ruined everyday things for me. I couldn’t be a 19-year-old and at this point, I was dying to be healthy.

May 18th came and I was at a 62-degree curve, ready for my spinal fusion. As we were driving to Denver to the hospital, I tried everything to keep from showing my fear and sadness because I knew that my parents needed me to be strong because they were trying to do the same. We didn’t know what was going to happen, even if the surgery was typically super successful. There was this little voice in the back of my head, making me think that there’s a chance I could be paralyzed because they were handling my spinal cord, or that I could lose too much blood or get an infection. I got to pre-op and I couldn’t keep it back anymore. I cried saying goodbye to my parents, a small part of me concerned that it would be the last. I said so many “I love you’s” through teary sobs as they wheeled me away.

When I woke up, I just remembered pain. That unbelievable, overbearing pain that distracted you from anything else. I received pain meds and could finally sleep, but I remember looking to my parents as if I couldn’t believe that I made it. The idea that I didn’t have scoliosis anymore was unreal to me.

I had to stay in the hospital for 5 days. At first, I felt like giving up with each passing moment. I couldn’t move on my own, go to the bathroom on my own or even reach for water without assistance. Sleep was only successful because of the drugs I was fed and I didn’t like a second of it.

Why am I here? I had thought several times as I looked to my parents sleeping in this little couch bed in my hospital room at night. Why wasn’t I at home? Why did I have to have this surgery? My parents have to go through this with me, how could I do this to them? I’m putting so much stress on them, they don’t deserve this, I said to myself. I would cry and cry, trying to stay quiet and when my parents woke up, I blamed it on the pain or discomfort, which was partially true, but not the entire story. I just wanted to get out of the room and disconnect the machines that I was bound by. I so badly wanted to be out at a concert or getting ice cream like all the other kids my age were doing in the summertime, but instead, I was lying in a stiff hospital bed wondering if I’d make it out. I tried everything to make myself feel better, but I was at a loss for solutions.

I remember one night specifically where I woke up crying out in pain and I had taken pills but as time passed, it felt like they didn’t kick in. I was continually crying, praying to God to stop this searing pain throughout my entire back. I asked my mom to turn on my favorite band The 1975, just to at least to give me a little distraction. I fell asleep. From that day on to the rest of my stay at the hospital, I listened to them, for it reminded me why I was alive. Music, my parents and God were the things I held onto as I fought my way to getting better.

Throughout the summer, I learned to walk again and change positions when I slept on my own, even though I went through a lot of pain and discomfort and loneliness from the lack of human interaction with others. It was the hardest three months of my life. I was extremely lonely, for I only heard from two or three friends. I was frustrated by my lack of physical health, when my mind was completely fine. I couldn’t walk for longer than 20 minutes on a good day. I couldn’t lift anything or bend down to tie my shoes. I was so mad that I couldn’t function like everyone else. I was sad that I couldn’t do things for my parents because they stayed up all night with me and sacrificed everything to make sure I was okay.

When I could finally leave home to start sophomore year, I was scared but so excited. I was finally on my way to normal and I could show it when I got to campus. I was reunited with the few friends that kept tabs on my health and I knew that I was going to have a good year because they supported me so much.

As I fast forward to right now, only 6 months after my spinal fusion, I cannot believe how much my life has changed. I went from being insecure and a slave to back pain, to a girl in repair, with a little bit of fear and a lot of helplessness, to me now. I’m healthy, free of pain and discomfort and so content with my life. I can fully bend, twist, dance, lift and enjoy being a 20-year-old who’s normal.  I never thought I’d get here honestly, especially if you asked me last year.

As I close out 2016, marking it the most trying year of my life, I am more than grateful for this journey. No, it wasn’t easy, but I feel like I nailed it. Had I not gone through with this surgery, or if I decided to give up when I was in that hospital bed, I’d miss out on me now, and I adore her.

I’m so thankful for my wonderful parents who sacrificed so much and continually remind me that I’m loved. I’m thankful for God and his ability to give me comfort when I don’t always know what His reasons are. I’m also thankful for music for getting me through the tough times and reminding me of the best parts of life. Finally, I’m thankful for the ability to be the 20-year-old I dreamed to be a year ago today: an unstoppable, driven and spontaneous young woman who looks to the future with excitement, not fear. I can’t wait to see where my journey takes me from here.