For any of you that do not know what scoliosis is here is a quick description:
On September 17, 2002, I had my first appointment at Children’s Hospital. I met my doctor, Dr. Reilly, who informed me that I was originally misdiagnosed about my x-ray results. Rather than the curve being 48 degrees, it was actually 54 degrees. He explained that all curvatures higher than 45 degrees were usually beyond the point of being corrected by spinal braces and that my only viable option would be to undergo spinal surgery. He went on to explain that the surgery meant placing two titanium rods along my spine to straighten it and then fuse the rods in place with screws. This is when I began to panic.
Up to this point, I had been nervous – but overwhelmingly scared. Learning about the procedure that I would eventually be having was terrifying. It sounded painful, and I remembering wondering if it would always be painful. I had never heard of someone having titanium rods along their spine, and that just sounded painful to me.
Aside from being nervous about the pain of the procedure, I was also scared of the social and lifestyle repercussions. I knew that my entire high-school experience – scratch that, my entire life would have to be lived a bit differently than everyone else. It was all too overwhelming to take in that within just a few hours I went from being a normal 12 year old girl who was excited about leaving elementary school to start high-school – to a girl who would be spending a majority of her grade 7 year in doctors offices, kicking off grade 8 with a major surgery, and missing her first months as a high-schooler because she would be training her post-op body back to normalcy.
Dr. Reilly was very calm and considerate, he answered all my families questions and tried to reassure me. I feared I wouldn’t be able to dance, wouldn’t be able to run and play with my friends, that I wouldn’t one day be able to have children, and time and time again he would reassure me that I would be able to do all these things. I just needed to take care of my physical health and be sure it was a priority for me for the rest of my life.
I am so thankful that Dr. Reilly was my doctor. Having a doctor care as much as he did really make the entire process a bit less scary, and the things I prioritized he always tried to prioritize, too – and that made me feel extremely confident in the surgery. For example, when it came to dancing – there were other doctors who said they would fuse my spine from the top of my neck to nearly the end of my tailbone which would make it impossible to move my hips. Because Dr. Reilly knew I loved to dance, he decided to stop the rods earlier so that my hips would have more mobility to them.
Over the next year, there were countless appointments, blood tests, x-rays and of course, there was an endless amount of teasing. My Grade 7 year was not at all what I had expected – I had never experienced teasing quite like this. Girls were especially mean. This was the year most girls began straightening their hair, playing with makeup, and wearing clothes that no longer sported Mickey Mouse or Cinderella. They were all beginning to take more time to stand out and enjoy fashion.
But, while they were primping themselves, I was taking more time to hide. I stuck to my oversized gap sweaters to hide my ever growing “S” shaped spine. Unfortunately, it seemed that everything I did to hide it just made it all the more noticeable. I was no longer “one of the girls”, in their eyes I was an outsider that was weird, different, and deformed. Certain names were thrown around quite a bit, “gimpy” was one of them that seemed to stick well around my classmates. I know it doesn’t sound like the worst name I could’ve been given, but for a 12-year-old it was enough to be completely crushing.
When we all finally graduated from Grade 7, all the girls were running around crying, and hugging one another. I remember one of my good friends turned to me and was completely baffled that I wasn’t upset. Was she all bleary-eyed and sniffly nosed saying “aren’t you sad at all? It’s all over!” – but I couldn’t be happier it was over. It was the worst year of my life yet, and I was ready to say goodbye and move on.
Summer 2003 seemed to drag on. I was so uncomfortable in my own skin by this point that I spent a majority of the summer indoors. Aside from the immense discomfort that my scoliosis ensued physically, it also meant that I was subject to speculation wherever I went. Going outdoors – to a store, to the pool, to the movies – meant that people would stop and stare, wondering what exactly I had. Frankly, I preferred when people just came up and asked rather than gawk at me as if I were some animal locked behind bars at the zoo.
Finally, September 2003 rolled around and I attended my first day of high school – also known as Orientation day. Orientation day was the only day of school that I would attend for another 2 months. In my first class, sewing, a girl sat next to me and we began to chat. She didn’t seem to notice my back, or at least it didn’t concern her – and we began to chat about hanging out during lunch. At the end of the hour, she asked to hang out again. When I replied “actually no, I won’t be here tomorrow. I am having surgery” it really began to dawn on me that I was going to be missing a few very vital months. These are the months that no one knows each other, and people are actively seeking out friends. I would be coming back just in time for circles to be built, friendships to be made, and for me to be an outsider again.
The night before my operation, I spent what felt like hours scrubbing myself down with a strong antibacterial soap that made my skin with an orangey/yellow colour in preparation for my surgery. By this time my curve had progressed to 84 degrees, and the curve was violently disfiguring my body. No oversized sweater could cover up the twist that now took over my spine. It looked angry, and it made me feel weak. I had trouble breathing and I was always sore.
I remember every moment of the night before and morning of my surgery. My mum was running around the house worrying about the last minute to-do’s, and I was watching TV with my brother and dad.
That night, I remember going to bed thinking I wouldn’t be able to sleep. I thought I was going to be terrified. After months of worry, I had figured this would be the ultimate moment of panic and fear. But, I slept fine. And, when I woke up the next morning – I was calm as can be.
I suppose part of the calm is knowing that the surgery was inevitable. I have always been someone who finds some level of peace in inevitability. If I can’t change it, I can’t panic about it.
My surgery took a total of 13 hours. They had said the surgery would take approx. 8 hours, so when it went over by 5 hours my family was in a full-blown panic. I had two vertebra’s removed, two titanium rods placed along my spine, 12 screws fused to my spine, and parts of my ribs were taken out to surround the rods which would help them fuse and secure to my spine.
I woke up in the ICU (intensive care unit) highly medicated on morphine, super thirsty, and completely out of my mind. Apparently, I had a long ramble about how toque should be spelled “Took”. Groundbreaking, Bree.
After surgery, you are incredibly thirsty, and they will not give you water. I had a wonderful nurse though, named “Bryan” who stayed by me and gave me all the ice-chips I wanted (which was a ton!), and he definitely lifted my spirits. When I think about my surgery and that experience, I can’t help but think of him and feel so thankful that he was my ICU nurse. His kindness really made such a difference.
After a day or so the doctors told me it was about time to get me on my feet and try to walk over to the wheelchair. Standing up for the first time after the surgery is simply painful. It’s the most uncomfortable, painful, and gross feeling I’ve ever had to go through. To best describe it, I felt like my entire spine was going to fall out of my back. I could feel the whole exposed cut on my back tense up as I was lifted to be seated upright. Taking a few steps felt like an 8-hour workout, I was completely exhausted by the time I got to the chair. My whole body ached, and I immediately asked to be moved back to the bed. Each day I was able to walk a bit further though, and slowly I was making my way through the halls. The main test at the hospital for whether they will let you go home or not is if you’re able to walk up and down the stairs. For some reason, I found stairs to be the easiest task and so when it came to this task I breezed through it.
The next two months were the most difficult months of my life. I had to re-learn how to walk, get off the bed, get up from a chair or a couch, how to pick things up. These tasks were things I never thought of as difficult before, and now I had to put so much effort and focus into re-learning them. Walking around our house would exhaust me to the point that I would sleep away the rest of the entire day & it was so tiring to eat that I would often pass the day away without eating. It took a quite a few months to get down my basics again. The other thing that took a bit of time to get used to was the very large scar that was left along my spine. I originally feared it, because I found that it was just another thing for kids to tease me about. I didn’t hate it, because it saved me, but I feared what it allowed people to say to me. But what I ended up finding was the older I got, the fewer people seemed to focus on it. The teasing just kind of stopped, and rather than having names thrown at me over it, I had questions and interest. People genuinely wanted to hear my story.
Now I wear my scar proudly. It shows strength, and now I wouldn’t change it even if I could. When you’re young, you worry about trivial things like maybe friends will be cruel, or maybe your crush will make fun of you. But as I grew up, I realized that someone quality would love me even more for it, because it is something that saved my life – which is exactly the type of person I’ve found.
Now I am an active and happy person. I am thankful for the entire experience – the fear, the teasing, and the pain because I truly feel it has made me a more empathetic, sympathetic and compassionate person. Experiences make us who we are and this experience has really shaped me. People often make a judgment for one’s appearance and this experience has taught me to never look at a person as if they are “different”.
I am also so thankful to my amazing doctor, Dr. Reilly. He really did save my life, and I am forever grateful for what he did for me. He had so much patience, love, and kindness towards me and my family. I honestly do not know if we all would’ve gotten through the stress and heartache of all of this without his immense support.
My experience with scoliosis: has taught me to try and live each day without fear & judgment & to live with love and kindness.