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My Scoliosis Story

September 6, 2019

 

I was 8 years old when I found out I had scoliosis. Little 8 year old me had pneumonia and needed a chest x-ray to look at my lungs; that was when doctors discovered my spine was curved in a slight S-shape (but my lungs were OK!).

There is no history of scoliosis in my family and no doctor could tell us why I had it or how bad it would get. All they could do was monitor it with regular x-rays as I grew. So that’s what we did.

3 years later, doctors told us the curvature was worsening by 1 degree per month. If we didn’t try to stop it, it could lead to severe and painful disfigurement. This was very frightening to hear as an 11 year old. The doctor recommended a scoliosis specialist to discuss our options further but what we heard from him was even more frightening. He gave us two options. Option 1: Wear a back brace until the age of 16. It would come all the way up to my neck and I would only be able take it off for 1 hour a day. Option 2: Undergo surgery to have metal rods inserted into my back to hold my spine in place. As you can probably imagine, Mum and I left the specialist’s office in tears.

Rods in my back was out of the question, and the thought of wearing a brace for 23 hours a day for the next 5 years meant I’d have to give up my two favourite things, dance and netball. I knew that giving up dance was not an option for me. I had danced since I was 3 years old and it wasn’t until someone told me I’d have to give it up, that I realised how much I needed it. For me, to dance is to breathe.

Mum jumped on google and started researching other options straight away. She stumbled upon an American doctor who lived in Sydney. Her name was Deborah and she had designed an innovative program to treat scoliosis. She believed that faster results could be achieved if the patient changes their diet and incorporates specific exercises to strengthen their back muscles, while also wearing a personalised brace for just 20 hours a day. The brace is moulded especially for the patient with built in air pockets to help push the spine back. The design was different for every patient; I was very happy to find out mine wouldn’t come up to my neck! This sounded like a much better option. To be able to have 4 hours a day of freedom meant I could take it off for dance class. So that’s what I did. Also, believe it or not, I managed to wear it whilst playing netball! (In hindsight, I have no idea how I did that!)

Mum and I would fly to Sydney every 2 months to meet with Deborah. Because I was growing, I needed a new brace every 4 months. Every day I had to do my exercises, go to the chiropractor, stick to my sugar free, high protein diet, sleep in my back brace and live in constant pain and discomfort. Mum and dad had to install air conditioning in our house because I couldn’t sleep at night. During the day I’d get heat rashes all over my stomach (Brisbane weather was not my friend!). On top of all that, I was going through the process of graduating primary school and moving to a new high school (which none of my primary school friends were attending). I still remember taking the aptitude test in my brace, surrounded by the new faces of my soon to be peers, the whole time I was wondering to myself “can they see it?”.

I couldn’t hide it for long and soon enough, I was open about my brace and even encouraged friends to knock on my “rock hard abs”. I quickly discovered that if you’re confident and open about what’s going on, people respect you a lot more. I also had two amazing older brothers who made sure no one dared to make fun of me! I was one of the lucky ones. 

By the age of 14 I was fully grown and my spine had straightened by 80%. We had the option to keep going with the program to get it to 100% but after advice from my Chiropractor, we decided my spine was straight and stable enough for me to lead a normal life. I still believe that was the best decision - especially in regards to my dancing. If I had kept my brace on for another year or so, my range of movement would’ve been even more inhibited than it is now. Even to this day, I have a very flat lumbar back. I cannot make a C-curve in my lumbar spine and this has meant I cannot excel at certain styles of dance. However, it does mean I have a very strong back, which has also helped me a lot in my dancing!

All I know is, I would not be where I am today if it hadn’t been for my parents. They did everything they could to give me the best possible future. I cannot thank them enough for listening to me, fighting for me and encouraging me to follow my dreams. Their support means the world to me and even though I must have made their life a living hell as a teenager (sorry mum), I hope they know how much I love and appreciate them.

This is my scoliosis story and it will always be an important part of who I am. Without it, I wouldn’t be me! So if you didn’t know this about me, now you know me a little bit better. If you also have scoliosis, I hope this story resonates with you in some way and empowers you to not feel shame. Own it!

Thank you for taking the time to read my story.
 

 

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