Thursday 2 February 2017

#ScoliosisStories: Emma Louise Harte

Today, something I've been wanting to do since starting CiaraSwalsh is finally happening! I am officially starting the Scoliosis Stories series! I'm kicking it off with a story by someone very dear to me, someone who helped me with my recent operation and who I am very grateful to. I asked Emma would she take part and be the first to share her Scoliosis Story. When she agreed I was just so delighted. So thank you Emma! Her story made me very emotional and her pictures are truly beautiful.

Never Looking Back.

When Ciara asked me to write this article, I didn’t think twice before saying yes. I was really honoured that she wanted me to be a part of the Scoliosis Stories section of her blog and even more touched that she wanted me to write the first piece of what I hope will be an amazing project for her blog. Those of you reading this who knows me personally are probably rolling their eyes at this point and saying, ‘Seriously? Is she going on about her back again?’ I know I must sound like a broken record by now but I will never stop talking about and raising awareness for scoliosis. I always tell myself that if my story helps one person, it was worth telling it. I know that if I had read a blog post from a post- surgery scoliosis patient before my own surgery, I would have possibly been more relaxed prior to my operation. I am not writing this piece to gain sympathy or seek attention, I am simply writing it so that people are aware that scoliosis affects its patients in unimaginable ways. I am writing this article for the person who needs assurance for their well-being in the future. I am writing this for the person who needs somebody who understands what they are going through.

I’ll begin by introducing myself to you all as Emma Louise Harte. I’m 18, from Tuam Co. Galway and I suffered mentally, physically and emotionally from Scoliosis for 3 and a half years until I was operated on in Our Lady’s hospital Crumlin in October 2014.  I know that when I’m reading an article it is normally at the mention of words like ‘mental and emotional agony’ that I exit the tab and scroll in search of something a little more positive to read. Who wants to read the boring words of a stereo typical teenage girl moaning about her problems and emotions? But if you bear with me for the three or four minutes it will take you to read this article in its entirety, I promise you there is nothing boring about my story. And, there’s a happy ending (kind of).

"I had no idea that from that day forward, scoliosis would take over my whole life."

 It all began in June 2011 when I had just finished my first year in secondary school. Life was very simple as 12 year-old me looked forward to a summer spent with new and old friends. As I was getting changed one day my friend noticed my right hip was more prominent than my left and we joked for a minute about how I looked slightly ‘deformed’ before showing my parents. The colour drained from my mum’s face as she noticed the curve in my lower spine that was causing my hip to stick out. Suddenly things were no longer funny. I had no idea that from that day forward, scoliosis would take over my whole life.

 I spent 18 months on a waiting list. I waited a whole year for my appointment in Crumlin hospital. I spent a whole year waiting just to meet a consultant. Those years between 2011 and 2014 are really a blur. I’m not going to dwell on them because even now, two years after surgery, I will still get upset and anxious talking about it. All you need to know is this; the years children spend on waiting lists for life changing surgery are scary, upsetting and painful in every way. It was the first thing I thought of everyday when I woke for three years. In the beginning, I would wonder if today would be the day I would finally get an appointment for an x-ray. Then I began wondering when I would meet my consultant. And, for the last 18 months of my scoliosis journey, the question that ran through my mind countless times every day was ‘Will I get a surgery date today?’ A 15 year old teenage girl should not be going to sleep at night wondering when, if ever, her spine will be straight.

Scoliosis is defined as an ‘abnormal curvature of the spine.’ The word ‘abnormal’ is really significant because most people have a curve in their spine between 1-20 degrees, but they are never alerted to it because it never causes them any pain, discomfort or danger. Bet ye didn’t know that! When my curve progressed to about 40 degrees it was obvious that the only solution was surgery which involves fusing the spine to titanium rods and bolting screws to keep it all in place. It is literally medicinal carpentry! So you can imagine the recovery is quite extensive. I had my surgery on the 16th of October 2014 and didn’t return fully to school until January 2015. In December, I would go to school for an hour or two a day and my teachers were very understanding regarding attendance and homework. I had a schoolbag with wheels, (just like all the cool kids do) and I still use it every week here in college.

"I spent 18 months on a waiting list. I waited a whole year for my appointment in Crumlin hospital. I spent a whole year waiting just to meet a consultant."

When I started 5th year in September 2014 I really saw no possibility of achieving the Leaving Cert points I needed to get to college. I had accepted the fact that I would have to repeat either 5th year or Leaving Cert before I had even attempted either year. It seemed highly unlikely that two years from then I would have a straight spine and also have gotten my first college choice. Yet here I am. I began 5th year in September and received the phone call with my surgery date later that month. By October my outlook had completely changed. It’s strange that even after all the really tough days I endured in the hospital and leading up to the operation the day that really sticks out in my mind is the day my Mum told me she had gotten a phone call from the hospital and they had given me a surgery date. She had driven me home from school and when we parked outside our house she told me. ‘When?’ I managed to ask. ‘Thursday week.’ I got two weeks’ notice. I wanted to cry, scream and vomit all at the same time and I made a good attempt at all three. She managed to get me out of the car and into my Nana’s house next door because she didn’t want my sister to see me so upset. I don’t know what was said in my Nana’s sitting room. They each had a hold of one of my hands and their faces were welcoming and comforting, but I have no idea what either of them said. What I do remember is how I felt. The strongest emotion was definitely fear, but I also felt strangely safe. While I was terrified for what my body was about to go through, I was in good hands. About an hour later I stood up and told my mum I felt okay to go next door to my own house. She said ‘Here we go now Emma, this is the beginning!’ I replied ‘No it’s not Mum, it’s the end.’

That was the end of my journey in my head. That was the day my attitude changed. That was the day I started to think in the future tense. The months that followed were really tough. There were tears every single day for about 3 months. In the hospital, at home, in my local doctor’s surgery, with the physiotherapist, they were all really difficult. But they were the pathway to a new life. I could see light at the end of the tunnel, something I never had seen before.

"The only solution is more theatre hours, more time and funding needs to be given to paediatrics spinal fusion."

I’m quite a strong minded person. I’m determined and I’m not sensitive. I don’t get upset too easily, and yet being diagnosed with scoliosis and never knowing when I would be well turned me into a different person. If waiting lists and poorly organised health care can do this to somebody as stubborn as me, what is it doing to our shy, sensitive, self conscious teenagers who are suffering from worse symptoms than I was? Physical pain is somewhat manageable. You take pain killers, you exercise, you go to physiotherapists and most patients will feel better. A hurting heart and an overactive mind are not so easily treated. The only solution is more theatre hours, more time and funding needs to be given to paediatrics spinal fusion.

 I can’t even begin to say how much my family and friends helped me. I received so many gifts from so many kind people. My mum never left my side and if she had to, she made sure somebody was there to help me if I needed it. She even made my dad sleep in my bed so she could sleep with me in hers. My friends visited me most weeks and my boyfriend visited me every day. I wasn’t great company, I was either asleep or talking rubbish but they still came. My Nana brought me for walks around the garden that felt like a hike in the mountains. My daddy sang and lit the fire beside the couch where I lay. Ye will never know what all these silly little things meant to me.

I still have pain. I end up taking painkillers most days. But I am studying my dream course in Maynooth University. I carry my own shopping home every week. I don’t look in the mirror 40 times before I leave the house judging my body. I love my scar. I can’t touch my toes. I need a cushion on every chair I sit on. But I am free from a life that was full of uncertainty. And I’m never looking back.

If you would like to feature your story whether it be your own personal experience or witnessing a close one battle Scoliosis email me: I would love to hear from you. Lets raise much needed awareness for Scoliosis!

Thank you Emma for taking part in #ScoliosisStories your spine and scar are beautiful! 💜


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