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 the 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 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.
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Well written and very touching.
Sometimes these harships truly do make us better people.
You are very inspiring!!!
Thank you so much =)
Wow… that is a very powerful read hun. I truly respect and admire your strength and courage through it all… what a scary battle!
you have left me proud and inspired…
xxxooo
*Barbie-Bombshell*.blogspot.com
Thank you so much, Jasmine! I so appreciate your heartfelt comment =)
Your courage is very inspiring and your kindness comes through in this post!
Thank you for sharing!!
Thank you, Aimee. I had been really nervous to post this originally but seeing heartfelt comments like this really makes me feel so much better about sharing this with everyone =)
I do know somebodys sister who has this and i know how hard it can be on not only that person but theyr family too, your a very brave girl x
It is incredibly difficult on ones family, it is really devastating. Hope your friends sister got through it all okay =)
Wow. There are lots of times where I browse blogs, not stopping to read everything but this one definitely made me stop, read ever word, and reflect.
The scar thing reminded me of Padma Lakshmi. She has a huge scar from a major car accident on her right arm and isn't ashamed of it at all. In fact, many photographers love taking pictures of it because it is so unique and helped kick off her modeling career too. I love that you've embraced it!
I want to thank you for sharing your story- it was very touching. All the pain and anguish you had to endure made you who you are today and I think that's just so inspirational 🙂
vonnie <3
ohsovonnie.blogspot.com
Wow thank you so much, Vonnie. I so appreciate you saying that. Padma Lakshmi is a really good example actually, she is one of the people I really looked to when I was younger and her honesty about her scars helped me feel better about my own.
Very touching sstory.
I wish you the best!
xo
Thank you, Christian =)
This definitely brought me to tears. We really never know how strong we are until being strong is the only choice we have. You are such an inspiration. Made me feel very blessed for my health and the health of my loved ones.
Wishing you an amazing weekend!
Xo Chelle
discoveringelegance.com
Wow thank you so much Chelle. Your comment really means a lot to me. Thank you.
Wow! What an amazing story. Middle school is a hard age anyway, and to go through all of that must have been so overwhelming. I love how you view it positively now and see that it made you who you are. I had to deal with something similar (but much less severe) and I really am thankful for it now.
Thank you so much for sharing. 🙂
Thank you, Laura. Really regardless of the severeness it is just such a hard age to go through that sort of thing, I can only imagine what you went through but I am sure the pain was just the same. So sorry you had to go through something as well, but I really do think it made me grow in a way that I wouldn't have if I never had experienced this. Like you, I am now thankful for it =)
What an amazing story Bree, thanks for sharing it with us xoxo
http://www.intotheblonde.com/
Thank you, Adele!
Aww you've been through so much! I'm surprised that it wasn't noticed before you were 12 though!
I know, isn't that shocking? Though it is the age I really sprouted up, I really got quite tall that year and so it became more obvious I guess.
really well written. thanks for sharing dear.
love
megha
http://meghafashionista.blogspot.com
Thank you =)
Beautifully written. It really has touched me.
thank you so much for sharing
xox
Thank you so much!
wow thanks so much for sharing this… you are very strong and I'm happy it has had nothing but a positive effect on you.<3 🙂
Thank you, Gabriele <3
You have my awe and my utter respect, I think you handled everything that was thrown at you amazingly well. It is scary to think that it could happen to anyone for unknown reasons, and it's awful that people teased you for it, but you should be so proud that you handled it with such strength and courage! I couldn't ever imagine how painful it was to walk again. I really admire you for taking the positive side of the situation and enjoying living each day. xo
Wow thank you so much, Sarah. Your comment really moved me, definitely made me smile, I so appreciate you commenting <3
Thank you Bree for sharing your story! It is very well written and definitely very inspiring! This must have taken a lot of courage to write this kind of post, but really this post just made me like you so much more, because this just proves that you are a real person with real problems and, therefore, it is easier to relate to you and to what you write!
Amazing! :))
callmemaddie.blogspot.com
Thank you, Maddie! I was really nervous, I never would have imagined this sort of response. I am so happy people have been so kind and supportive.
This was an incredible read. Thank you for sharing this! As someone with a medical condition, I can definitely relate to everything you wrote – the teasing, the nurses, everything!
SHF
thechroniclesofs.blogspot.com
PS: I've tagged you in a post, so feel free to take a look. You'll find it here: http://thechroniclesofs.blogspot.com/2012/01/tag-youre-it.html
Thank you so so much. It's really nice to meet someone who can really relate to all the frustrations of having a medical condition, though I am so sorry that you're having to deal with this =(
Your a true inspiration!
Thank you for sharing
thank you <3
I absolutely love and admire this post, its very touching to read. I'm almost graduating as a Physiotherapist and have diagnosed a 5 year old with this before, sending his family into turmoil as his dad, who also had scoliosis, felt it was his fault!
I hope writing all of this helped, thank you for sharing it 🙂 xx
http://fridayisforever.blogspot.com/
Aw thats awful, 5 years old – wow that would be terrifying. That poor father too, I can only imagine how hard that must have been on him as well. =(
I totally and completely understand what you have been through . I to went through the very same thing but was just starting 6th grade …. My Fav name kids called me was Robo B****. It hurt then but as I got older it just literally tickles me…
Oh wow! Kids can be mean, can't they? So sorry you had to go through that, the teasing to me was the worst part.
Your story really touched me as well. I am still kinda worried about my scar in bathing suites and have always dreamed of having the perfect back , i know that sounds silly but oh well my little girls are so amazed @ the pics and everything because of me being close to their age when it happened . I just hope my babies never go through this
Thank you so much. I definitely have gone through times when I worried about my scar, in bathing suits especially I'd say but over time I stopped even thinking about it, and now it never crosses my mind! I hope your girls never deal with this either, it is really hard, but it sounds like they have a wonderful role model in you – you sound like a very strong person and a really loving mother =)
i just read this, so touching. I too have scoliosis but was never offered any surgery, i was told to swim and do excercise and ballet from a young age to help straighten it out but it hasnt seemed to work – im a little more worried now after reading this! xx
If you're under 40 degrees often surgery won't be offered, though it's definitely good to keep an eye on. Exercising can definitely help, I've heard it can do wonders, but at the point my spine was at I couldn't have done anything else. If you're worried though definitely go see a doctor, it may put your mind at ease =) xx
Oh wow. This was such an amazing and inspiring read. I am glad you are doing well!
xoxo,
-A
Thank you so much xx
I'm so sorry to hear that you've been through such an ordeal – you are so positive the way that you talk about it though and how it has made you enjoy your life even more 🙂 Thank goodness your scoliosis was found and was able to be treated. I also suffer from scoliosis but I don't have it very severely at all and haven't had to have anything done to it.
You have such a great outlook on life and your clearly a really lovely person 🙂 I'm a firm believer that the tough things in life happen to make us stronger 🙂
Love Holz oxo
http://beautifulsimplicity-holziepink.blogspot.co.uk/
I have a very minor form of scoliosis. Not anything to worry about. But the doctor's say it was brought on by my over large chest (which I hate) thank you for sharing this story. It takes a lot of courage to. Everyday should be lived to the fullest! xo
Hi Bree!
Thanks for spreading awareness about scoliosis. I had a similar surgery a few years back as I spiked in height and my curve reached almost 80 degrees. I'm now also a twenty-something or other and the scar sure makes me proud. (:
Cheers!
I have scoliosis too and I'm most likely going to have the surgery next summer. I was told to do exercises at first but now surgery has been recommended. I'm so nervous about it but I know it will be for the best. Thanks for sharing, this is very helpful. Glad it went well for you 🙂 x
‘When I was young I always worried that my "future boyfriend" would be disgusted by it but I realized over time 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.’
My Mom has scoliosis and related hip issues (5 replacements) and I am caring for her for the time being. She is recovering from the fifth. I am glad medicine can do much more with modern techniques.
Glad for you.
Russ, BC
I just discovered your blog and came across this amazing post. I also have scoliosis, I found out 11 years ago (at the age of 14). My diagnosis came in a similar fashion to yours, I was bending over one day and my mom noticed that my back was higher on one side than the other. I visited a orthopaedic surgeon but wasn't recommended for surgery. I've been a competitive swimmer since the age of five and the doctor thought that I had strong enough musculature that it wasn't necessary. Over the past few years, I often wonder if surgery would have benefited me as I believe that my curve has worsened to some degree. I loved reading your story and think it's wonderful to share with so many people that might not know about scoliosis. I'm always surprised at how common it is, as I had three friends in high school who also had it. I love how you touched on being worried that your future boyfriend would be find your back unattractive; I felt the exact same way! I remember the first time I explained it to my now husband and the relief I felt when he said that he hadn't even noticed and it didn't bother him at all. I'm so happy that your scar symbolizes strength and courage!
Thanks again for sharing your story, it definitely resonates with me!
xo jen
Wow thank you for commenting! I so appreciate your kind words, and isn't it true – the people who love you really don't notice the little things like that! I am sorry your curve has worsened, perhaps visiting another doctor for a second opinion would be helpful?
This really touched me reading this. My scoliosis was discovered when I was 14 and I was told I had a 52 degree curvature. I was offered surgery but no physio or any other options. I suffered from such severe back pain I couldn't get out of bed most mornings but the surgeons could not promise me that the op would stop or even help this pain so I could not see the point in going through such a serious procedure with no definite outcome. I have undergone a few exercise courses which helped at the time and in comparison to what I used to feel, I hardly feel any pain. I am lucky because I don't think scoliosis has defined me at all, most days I forget that I have it. Thank you for writing about your experiences with scoliosis it is nice to remember how many people are going through similar things and it is lovely that your operation was such a success.xx
I loved reading this post (although I'm sorry you had to have the op!) I had scoliosis too, had surgery when I was 14. I have 2 rods and 12 bolts too, although unlike poor you they didn't take any ribs out (that was because of my breathing problems I have due to CF.) The pain was the worst wasn't it, didn't it feel like it'd never stop? Sooo glad it's all over with now and I'm happy that you've taken the positives from the experience instead of thinking about the awful parts. Be proud of your scar, I know I am of mine! xxx
Wow your story is incredible. I cannot believe people
made fun of you. 🙁 truly inspiring to read about someone who overcame a difficultly in their life! Amazing! 🙂
what an inspiring story and it couldn't have come at a better time. I'm planning to do a surgery since my curve is over 80 degrees and so to see you come out of the ordeal, healthy and stronger, has inspired me so much.
Hi ! Loved your story by the way I cried so much I’m also going through the same thing but my degree is a little less. I was wondering if you could contact me on my email because I have some questions I would like to ask you if you don’t mind. Looking forward to your response. My email is karrystylem3@gmail.com thank you for sharing you story it helped a lot.
I just saw your sweet comment. I am so sorry for the delay, I was away for a few days for my wedding. I would love to answer your questions 🙂 I just emailed you.
Thank you so much for writing this. My 18 month-old son was diagnosed with scoliosis with hemivertibrae when he was still in the womb. We know it is very likely he will need surgery one day. We find it hard to find information and resources so your insights are so valuable. We also live in Vancouver and he has been seen by the team there! I am so glad you found the strength to get through your treatment.