LifeStory by Olivia
Visit her blog “Champagne and Cologne”

I am an identical twin. My twin sister died at birth and I have always struggled with the idea of missing something I never truly knew. Her spine wasn’t formed properly, and my parents knew they would only be taking one of us home. They named her Lea Michele. Lea is my Mum’s middle name, and my Dad’s name is Michael. I grew up knowing that I had a “Guardian Angel”.

When I was 12 I found out I had congenital scoliosis. We had a nurse come into school and tell us about how, with scoliosis, there is a curvature of the spine, and a good way to detect it is to bend over and touch your toes, and if one side of your back is higher than the other, then you should get it checked out.

I went home that afternoon frantic. I told mum, and my bothers and sisters, and my dad. They all acted calm and collected but I later found out they had been concerned about this for a while too. One afternoon a few weeks earlier, I was reading on the front porch in the sun and was bent over my book, and my siblings noticed and showed my mum. So my coming home with this news probably wasn’t that shocking.

We made an appointment with the GP, which led to x-rays. Which led to a visit to the specialist.

I did have scoliosis, but not the conventional type where it is purely just a curvature. Congenital means “born with” – and the reason I was born with my scoliosis is because I had an extra vertebrae – but only on the left hand side. This extra half had a rib off of it too. Here I was, with extra spine when my twin died because hers wasn’t fully formed? Basically, my spine was straight until it hit this uneven patch, where is curved out at the bottom. The funny thing is, that my condition should have been so much more physically apparent, but because I was so into swimming training, my spinal muscles were so strong that they held me in place. My shoulders were level, and for someone with my condition it is usual for one shoulder to be much higher than the other.

So, we had to book in for surgery. I was lucky enough to have the best orthopedic surgeon at that point in time in WA as my doctor. The surgery would basically be two in one, and was expected to take about 10 hours. They would first remove the extra vertebrae and rib – but to get in there, they would have to remove the whole vertebrae and ribs directly above. I started with an extra half and now I am minus one! Then they would roll me over and put steel rods against my spine. These will stay in there forever.

In the lead up I gave blood over 3 different occasions, since it was anticipated that I would need a blood transfusion. My mum desperately wanted to donate for me, since she felt the amount of blood was too great for me to give myself. However, we were not a direct match and while her blood could have been used, it would have been better if it were my own. The first two times I gave blood I thought it was great. I was nervous, but it didn’t hurt and I didn’t get dizzy, and afterwards I got all this free food and the rest of the day off school (I had never had one day off school until my back surgery. Not one in 7 years)! The third time I think I was a bit cocky after the success of the first two times, and I think I looked at another person across the hall and looked at exactly what was happening, and I came over very dizzy, had a hot flashes, and nearly passed out. Luckily they put a fan over me and I recovered.

By the time all of this had happened I was 13 and half way through my first year at High School. The surgery was a success, it went for over 12 hours. My lungs collapsed during (this is normal, they had to peel back my rib cage), my organs started turning off since I had been under anesthetic for so long, and it was lucky I had given so much blood leading up to it because I ended up needing every last drop. I was on life support afterwards, and I remember once I woke up they took the ventilator out of my throat. The nurses said, “Don’t look, Mum” which I thought was really funny because she’s my mum, not the their mum, silly nurses!

I don’t remember much after the surgery. That was horrendous though, having the ventilator removed. I remember having the sorest throat afterwards but not being allowed any water, just ice chips, which my sister fed me. I remember seeing my sisters partner Christian and asking what he would take with him into the desert. I was so drugged up so I don’t blame him for being confused, but I was dreaming about lettuce. Because it’s food and water so would be ideal for the desert. I remember seeing my brothers then girlfriend (now wife) standing over me, and asking where my brother was, only to see him sitting in the chair next to my bed with his head in his hands shaking, and dripping with sweat. This is the brother who is a fireman!

I moved from ICU into a normal ward after a few days, and they removed the drip from my back. I still had the tube down my nose, and how I hated that thing. I know it was necessary since I wasn’t allowed to eat so it had to remove the bile from my stomach, but ughh. I was only in hospital for another week after that, but god it felt like a month.

My family took it in shifts to visit me, and tried their best to ensure I was never alone. I cried a lot. I hate hospitals, and was in pain, and was certain I’d made a terrible mistake in ever going through with the surgery. I pretty much had visitors from 7am until 11pm. I think the nurses allowed my family to break the visiting rules since I was young and terrified. I also had multiple visits from two of my best friends. Who are still my best friends today. I remember the first day I was able to sit up, I was eating my dinner in the chair next to my bed. Sas was coming to visit with her mum, saw my empty bed and was certain that I’d died. She made her Mum walk in first and there I was sitting up oh-so proud in the chair.

I remember a nurse, towards the end of my hospital stay, completely changed my mind set. She was the nicest lady. It was about 12am and I was in excruciating pain. I had just been taken off my morphine drip and the panadine forte tablets weren’t really doing the job. I called the nurse in, nearly in tears, and she gave me some more medicine and sat and talked to me. I don’t know how she knew I needed that, but she did. Most of the other nurses were nowhere near as nice. She sat and talked to me and told me that when she has back pain and is trying to sleep she lies on her side with a pillow in between her knees and knees bent. She went and got lemonade from the nurses lounge for me as a sweet to have my tablets with, and generally gave me a sense of comfort – which I have learnt is invaluable.

Now, 10 years later, I still don’t know how I feel about this whole experience. I do believe, as corny as this sounds, that I had a bit of extra help getting me through it though.

I had to give up swimming. Swimming up until that point had been my life. I had dreams, man. I was going to the Olympics. I mean, I probably would never have made it that far – I don’t have the right build for swimming – but how I loved it. I loved training, following the black line up and down the pool. I loved butterfly, it was my favourite stroke. I wasn’t allowed back in a pool at all for 3 months after the op, and even then I wasn’t allowed to actually swim until about 6 months. But the water felt different. My back felt different.

Don’t get me wrong, I can swim now. And I think I’m pretty good, considering how unfit I am. But that’s just because of my technique. If you are taught to swim properly, you will never lose your technique, and it makes you that much of a better swimmer. But I had to give up on my dream, I’m not allowed to do butterfly anymore. Well, I can, but I have to be careful. I generally get very sore afterwards.

But, I get sore after a lot of things now.

I have three scars across my back. One down my spine; one along the side, tracing the ribs; and a small one below, where the drain was. Don’t get me wrong, I don’t hate my scars. I think scars tell a story, make me interesting. I do feel that they take away some femininity though, but as far as scars go mine are pretty good. They aren’t too raised, or red. I’m pretty lucky I had such an amazing surgeon and that my body apparently scars well.

I know I am in no way worse off than others. Hell, my own dad has been through so much more than me. He’s been paralysed, had multiple surgeries and can now walk with the aid of sticks, and he has now also had and beaten cancer. He is undoubtedly my hero. As is my mum. She has been the rock through everything, my twin dying, dads troubles, then mine. I have two of the strongest individuals for parents in this world.

But I find it hard to be happy that I’ve been through this. I mean, I suppose it’s hard enough being a teenager and figuring out your body when you don’t have a demented spine. But at the same time, this is something I have been through, and it has undoubtedly made me who I am today. I look back on the 13 year old me with pride, I didn’t know that little girl could be so strong or brave.

But what would my life be like now if it had never happened? Would I still be swimming? I probably wouldn’t have partied so much or stop caring about school work. I feel like this is the event that changed the course of my life. Pre-surgery, I was a gawky pre-pubescent, who read 8 books a week, and swam almost as much. Post surgery, I became a teenager always trying to improve herself, look different, party hard, etc. That’s not to say I went off the rails. Just that different things became a priority.

I think now I have combined the two of those me’s. I think recently I have been getting back to the girl I was before, and embracing the things she loved again.

I don’t resent the fact I had spinal surgery. It was an experience that made me who I am today. But you can’t help but wonder what could have been, I suppose.

When I was 16 my Mum bought me a star in the sky, located in the Southern Cross for my birthday. She named it Lea Michelle. When I was 18, my best friends Dad passed away suddenly and we had always said that we would get a tattoo together. The next day we both went and got a star on our right wrists. I believe mine stands for family, belief, and love. And that is the strength I get from it when I feel down.

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