Holly Edwards

My name is Holly Edwards and I’m 23 years old. I have been diagnosed with scoliosis for about 13 years and I had my spinal fusion with Harrington rods in 1998. On my mother’s side of the family the women in three generations have had scoliosis, and I am one of them. My two older sisters have never had any back problems. I am a university graduate and have completed my degree in mixed media fine art at Westminster University.

Today, nobody would know I had anything wrong with me, unless they looked at my back. I used to have a winged shoulder blade, which means that it used to stick out more than the other; I couldn’t see it, so my attitude was out of sight out of mind! I was offered cosmetic surgery to shave the shoulder blade, but my parents refused; it didn’t bother me. It has since been unintentionally fixed through the course of my treatment in my second operation but it was never my primary concern because I had accepted it. It disappoints me to read on websites about girls worrying about their scars being huge or that they can’t wear a certain dress. Personally, I think people should have a positive outlook – the scar is so thin you can barely see it!

Throughout my teens and through the beginnings of adulthood, art has been a real therapy for me. Within my practice of painting, the condition has been a reoccurring theme and my X-rays have provided me with images too. I have created responses to how I have felt over the years, how scoliosis has changed me and will be a part of me forever and how I feel about myself. I have a positive attitude about the condition and know that without surgery, I would not be who I am today.

Surgery was the best thing that could have happened to me. Having the operation was an end to the trauma of being bullied throughout primary school and secondary school. People were not used to seeing somebody look different, wearing the plaster cast brace, which makes you look like you are wearing hockey padding. I was between the ages of 10 and 13 years when I was in my brace, and having adults staring at me was shocking and upsetting. This rudeness affected my sisters, who often stared back or actually questioned them. You expect children to be curious, but not adults to be rude. As mentioned in the May edition of Backbone, the term hunchback (of Notre dame) was a word I was called on a daily basis. It hurt, because I knew I wasn’t, and felt that I should get scoliosis tattooed to my forehead. But the bullying and name calling did not stop me; during the 3 years I waited for surgery, I carried on playing my favourite sports, including netball, in my plaster cast and plastic brace.

With a 63 degree curvature, it was my time for the operation, which I had on 6^th October, 1998. My experience was really good and I made friends on the adolescent ward. The only thing that went wrong was that I went for some time with no pain relief, which surprised the nurses, because I stayed quiet as a mouse. The scariest moment had to be learning to walk again. My mother helped in every way she could after my surgery and I believe we became closer because of her having to do so much for me during the recovery time.

For 18 months I was on a cocktail of drugs, back massage, physiotherapy and acupuncture but I found no solution to the pain I was experiencing which was a great annoyance and irritating for me and everyone around me. I went back and forth to hospital, with very little information about why this was happening, except for the possibility of my body treating the rods like foreign bodies. I am now classified as disabled due to the lack of movement and mobility that arose during this time.

On February 25th, 2009, I underwent my third operation, which was to correct a lower curvature that had developed over the past 10 years since my initial surgery. Surprisingly, I was not as nervous as I thought I would be. It seemed like my last chance to be out of pain for the first time in over 2 years. At operation the surgeons replaced the metal rods from half way down the original fusion and extended the fusion to T3. This procedure would restrict movement, but in the long run, the benefits outweighed the effects it would have.

Being scared that the operation wouldn’t work was one of my concerns; that having a cocktail of drugs would be my way of life and I wouldn’t be able to do everyday activities as easily as any other 23-year-old. But I was wrong, the operation went smoothly! The nurses were brilliant and played a major part in my quick recovery. They motivated me to be independent, and little things like getting me to put on my own sock or actually being able to wash my own hair became like winning a gold medal in my eyes. I had to be braced with a plastic corset; 10 years since the last time. The brace was an extension of my freedom, as anyone who has had it will understand. I got it printed in the most girly design, pink, orange and purple hearts spread all over it, unlike 10 years ago when I got it designed with the solar system on it.

All my experiences with the initial fusion, removal of the Harrington rods and the extension fusion, has lead me to believe that we can either dwell on the negative experiences or use them to our advantage, and that’s what I have done by using art as a therapy and actually talking to people about what I have gone through. Fingers crossed it has been third time lucky!

I now have a full time job working at a jeweller, and my employer was highly supportive throughout my last two operations. I’m now planning my future with my boyfriend of over 5 years and my recovery is going well. Art will remain an important part of my life, as it made me more aware of my body and my life concerns.

If anybody would like to contact Holly to discuss their scoliosis problems she is a SAUK Youth Representative and she would be only too happy to listen and provide any advice that she can. To be put in contact with Holly please become a member.