My Life with Scoliosis

For any of you that do not know what scoliosis is here is a quick description: “Scoliosis is the twisting or curving of the spine away from the middle, creating an S-like shape.  Some patients have scoliosis due to a muscle weakness brought on by polio, cerebral palsy, or spina bifida; Some are just born with scoliosis and it is due to a formation problem while the infant was developing; But, most scoliosis patients will be diagnosed as “idiopathic” cases which means the cause is unknown.” – Body & Health Canada. If you’d like to read more on scoliosis: Body & Health Canada

My spinal condition was first brought to my attention by a friend. We were in going into grade 7, our final year in elementary school and we were enjoying our last few days of summer in the backyard of my family’s home. I had two friends over that day and we were just jumping on the trampoline.

One of my friends stopped jumping, looked at me, and said: “hey, is your back okay?” and I’m pretty sure I said, “Uh, yeah?”. I shrugged it off – I had never experienced back pain, or noticed anything odd so, what exactly was she talking about?

My dad overheard our conversation and walked over to us. He has lived with a bad back for years and knows the difficulties of having to live with a spinal injury. He looked at my back and within a few seconds, he noticed and agreed that my spine did look a little “S” shaped. That’s when my play date with my friends was put on pause to go to the doctor.

That same afternoon we went to our local clinic to see a doctor. The doctor asked me to bend forward to touch my toes and he immediately said that it looked as though I had scoliosis. He said that my spine absolutely needed to be looked at further by specialist.  He advised that first we go get an x-ray that day and that he would put in a request to get an appointment at Children’s Hospital with a specialist.

Being a kid, I really didn’t understand what a twisted spine meant for my health. It was more confusing than concerning to me. It also was a huge inconvenience in my mind, I mean – it cut my play-date short, and now I also needed to get an X-ray? How unbelievably boring.

That afternoon we were off to get my X-rays done, and it didn’t take long for us to get the results. My spinal curve was estimated to be around 48 degrees, and I would be needing to see an orthopedic specialist at BC Children’s Hospital as soon as possible.

During our initial visit to the clinic, we had been told that seeing a specialist could take months. Severe cases took priority so I may have to wait. But, within a few days, we received a call letting us know that our appointment was just 3 short weeks away. Being called in this quickly put my family into a panic. It signified that this was more serious than we had thought.

On September 17, 2002, I had my first appointment at Children’s Hospital. We initially met with another doctor, one who didn’t end up performing my surgery, but I honestly can barely remember this appointment and I think that’s because it was so traumatic and shocking for me.

The first doctor we saw said he would fuse my spine from the base of my neck to my hips. It would mean that I wouldn’t ever be able to ski, never really be able to dance, do gymnastics – do so many things that I loved. It was a complete shock to me. I was a really timid kid, so chances are if my parents had felt confident with this doctor then I would’ve gone ahead with him and his surgery plan – regardless of my fears deep-down. I’m glad they also felt concerned over this surgery plan.

I didn’t want to give up all those things, and if they hadn’t of spoken up on my behalf then I probably would’ve had to. I’m so glad that they were both such strong advocates for me, because I wasn’t a strong advocate for myself always during this process. I asked questions and those probably showed my hesitancy and worry, but as a kid, I was never very good at pushing back to authoritative figures.

At some point in the next few days/weeks, I met my doctor. He 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 a spinal surgery known as the Harrington Rod Surgery.

He went on to explain that the surgery meant placing two titanium rods along my spine to straighten it and then fusing the rods in place with screws. He was extremely patient with me and my family, answering all the questions that we had – and let me tell you: we had plenty.

But, hearing about the actual surgery scared me. I had heard the word “surgery” tossed around a lot since finding out about my scoliosis, but hearing what it really entailed terrified me. I remember thinking that it sounded painful. I remember 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. Remember, I was around 12 years old – your friends and upcoming high school experience is all that you really think of during that time of your life.

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 already made so clear that I would always have to have some focus on my health and spinal health.

I would need to strengthen my core (seriously, imagine how boring that sounds to a 12-year-old), I would be missing the first few months of grade 8, and there were activities I wouldn’t be able to participate in – some for the next year, some forever. It was all too overwhelming to take in. In my mind, it felt like my life had changed so much in just a few short hours that day.

That day, 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 much 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. I knew the surgery was inevitable, and I knew that I had to come to terms with what that meant for me. 

After the doctor explained his surgery plan, which was to fuse my back from the base of my neck to just below my rib area, he then took some time to address my concerns. 

I feared I wouldn’t be able to dance, run, play with friends, that I wouldn’t be able to have kids one day, 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. Looking back, I am really thankful that this particular doctor ended up being the one who performed my surgery. Having a doctor care as much as he did really make the entire process a bit less scary.

I appreciate now that he always tried to prioritize and address the things that I considered a concern. I think him taking that time to hear out my concerns really made me feel so much more confident going into the surgery. 

For example, when it came to dancing – the first doctor said they would fuse in a way that would’ve made it pretty much impossible to move my hips. Because the doctor who performed my surgery knew that I loved to dance, he decided to place the rods so that my hips would have more mobility to them.

Over the next year, there were countless appointments, blood tests, x-rays, and let’s be honest: it sucked. But, nothing sucked as much as the teasing I endured at school. My Grade 7 year was awful. I had never experienced teasing quite like this.

Girls were especially mean, even girls that I had once considered friends. Now, you have to remember, this was the year most girls began straightening their hair, playing with makeup, and wearing clothes that no longer sported Disney characters. They were all beginning to take more time to stand out and enjoy fashion and makeup. But, while they were primping themselves, I was taking more time to hide. I stuck to my oversized sweaters to hide my ever increasingly “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 with 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 completely crushing.

One thing I’ll never forget is the last day of Grade 7 before the summer break. We all finally “graduated” from Grade 7, all the girls were running around crying, and hugging one another – as if we wouldn’t all see each other in just a few months at high school.

I remember one of my good friends turned to me and was completely baffled that I wasn’t upset. She was all teary and sniffly 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 from it all.

Summer 2003 seemed to drag on. I was so unbelievably uncomfortable in my own skin by this point that I spent the majority of my summer indoors. Aside from the physical discomfort from my scoliosis, my s-shaped spine also meant that I was subject to speculation and comments wherever I went. Going outdoors – to a store, to the pool, to the movies – meant that people would stop and stare, wondering what exactly what was wrong with me. Frankly, I preferred when people just came up and asked rather than just stare gawk at me.

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 bother 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 first few months are the ones where no one knows each other yet and people are beginning to forge new friendships, groups, and cliques. I would be coming back to school just in time for those circles to be somewhat established. It meant that I could be coming back just to be an outsider again.

By my surgery date, my curve had progressed to 84 degrees, and the curve was violently disfiguring my body. No over-sized sweater could cover up just how twisted my spine looked. It looked angry, and it made me feel weak. I had trouble breathing because my ribs were crushing my lungs, and I was always sore. I remember every moment of the night before and the morning of my surgery.

The night before my operation, I spent what felt like hours scrubbing myself down with a strong antibacterial soap in preparation for my surgery. It was so intense that it even dyed my skin with an orange/yellow colour. My mum and dad were running around the house worrying about all of the last minute to-do’s, and I was watching TV with my brother. At some point my parents joined us and we just all stayed up late (well, like 11PM – late for me, at the time) together.

That night, I remember going to bed thinking that I wouldn’t be able to sleep. I thought I was going to be terrified, up all night worrying, but after months of worry, I guess I had no worry left. I slept fine.

When I woke up the next morning, I was calm and ready. 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.

That morning was a busy one. I remember how nervous my family was. They kept asking me if I was worried, or scared, but I just wasn’t.

After getting the IV in my hand, I was then ready to be wheeled into surgery. As I was being wheeled in, my mum was at my side. I saw a room full of surgical tools and buckets. The tears came fast and I felt like my heart was going to explode it was pounding so hard. My mum saw my panic set in and also got a glimpse of the operating room, and it scared her, too.

At that moment, I guess because she was scared and feeling bad for me, she asked me if there was anything that I wanted as a gift after the surgery/when we got home. In my nearly knocked-out state, I became alert and quickly said the one thing that I wanted most… Mario Party 3 for N64! Looking back I am always surprised about this, why wouldn’t I have said Mario Kart? Such a better game! Just kidding.

Luckily, it was at nearly that exact moment that the anesthesia set in, and I was out like a light. I can only imagine how scary that image must have been for my mum though, seeing my panic set in as I was being brought into that room. But, I also kind find a little humor in the fact that through my panic, I still really wanted that dang video game. 

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 worried. I can’t even imagine how scary that would’ve been for them. 

I had two vertebra’s removed, two titanium rods placed along my spine, 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 Intensive Care Unit highly medicated on morphine, super thirsty, and completely out of my mind.

Apparently, I shared a long ramble to my family and hospital staff about how toque should be spelled “Took”. Groundbreaking. 

After surgery, you are incredibly thirsty, and they will not give you water. I had a wonderful nurse though, named “Brian” who stayed by me and gave me all the ice chips that I wanted – which was a ton! He definitely lifted my spirits. When I think about my surgery and that experience, I always think of Brian and feel so grateful 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 painful. It’s the most uncomfortable, painful, and gross feeling that 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 incision 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 though, I was able to walk a bit further though, and after a couple of days, 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 easy to go up and down. When it came to this task, I breezed through it and so I was able to go home.

The next two months were the most difficult months of my life. I had to re-learn how to get up from a chair, couch, and my bed. I had to figure out a new way to pick things up after I dropped them. Most annoyingly though: I had no endurance, and I had to slowly build it over time again. Walking from the living room to our kitchen was a workout. I would feel completely out of breath by the time I got there. It felt like I would never be able to walk long distances again, heck it felt like even short distances were out of the question.

Everything exhausted me. 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. Sure enough though, within those first few months, I was able to slowly re-train my body to do some of my normal day-to-day movements. Though it probably took about a year or two to feel totally normal, by the time I went back to school, I was able to walk to and from my classes without feeling totally gassed.

Let’s talk about the other thing that took a bit of time to get used to: my new battle scar. Yes, I did experience teasing because of it, and I hated that. Grade 8 was a rough year, in fact, I think it was the worst year of my life. If I had thought Grade 7 was bad, well, Grade 8 was a doozy. Some of the teasings were directly about my back, my scar, and my surgery, but most of it exploited my healing process.

For example, “friends” skipping away saying they’d meet me at the other side of the school knowing that I wouldn’t be able to walk fast enough to catch up, and would likely spend my entire lunch trying to get there. Just mean stuff, honestly. 

Here’s the thing about that though… Some kids are just mean. They will find any “weak” point and use it. I used to find it really painful to think about my life during this year, and I used to feel pretty angry about it. But the older I get, the more I realize that it was a lot more about them than it was about me.

I don’t know what was going on in their lives, but there had to be something to make them so cruel. By the end of Grade 8, I realized the best thing to do for myself was to switch schools and get away from the people who viewed me as a target rather than a friend.

So, I switched schools. It was the best decision I ever made. I ended up meeting a group of people who saw my scar in the same way that I saw it, which was as a big part of my journey and a sign of strength. The teasing stopped, and rather than having unkind names thrown at me because of my scar, I received questions and genuine interest. People wanted to hear my story.

When you’re young, you worry about trivial things, like maybe friends will be mean, or maybe your crush will make fun of you. When I was young, in Grade 8, and going through my worst moments, I always worried that my “future boyfriend” would be disgusted by my scar. I thought that because that was the sort of nonsense that I was being told by these other kids. Looking back on that, it makes me wish that I had taken my parents advice and switched schools earlier. It would’ve saved me from some of those negative thoughts and battered self-esteem.

Over time though, I realized that someone quality would love me even more for my scar because it came from something that saved my life. That is exactly the type of person I have found and married.

Now, I am an active and happy person, and I am thankful for the entire experience – the fear, the teasing, and the pain because I believe it has made me a better person. I hope that it has made me a more empathetic, thoughtful, and kind person. I now wear my scar proudly. It’s a visible representation of my strength. I wouldn’t change it even if I could.

Our life experiences shape us into who we become, and I know having this experience happen to me so early on has really helped me define who I am and who I want to be.  

I am also so thankful to my amazing doctor. He really did save my life, and I am forever grateful for what he did for me. He had so much patience and kindness towards my family and I honestly do not know how we all would’ve gotten through the stress and worry of all of this without his guidance and support.

During our wedding vows, my husband shared that one of the things he loves most about me is my resilience. I hadn’t ever thought of myself as resilient, but looking at my life and some of the things I’ve gone through, I suppose that I am. I think in part that’s because of this surgery and everything that came along with it.

My experience with scoliosis has taught me to try to live each day without fear and judgment. It has helped me grow with a deep understanding that we don’t always know what is going on in someone’s life, and how a bit of kindness can really help a person push through their hardest moments.