Interview with Freya – founder of Back the Back Walk for Scoliosis
Hi Freya! Tell me a bit about yourself and your scoliosis history, how old were you when you first diagnosed and how did you feel at the time?
Hi Louise! I am the founder and organiser of Back the Back Walk. I’m from Buckinghamshire, I have just turned 20, I finished school two years ago, and I am going to Durham University this September to study Music, first study voice.
I was diagnosed with Adolescent Idiopathic Scoliosis when I was 11 years old – my mum first noticed that one of my shoulder blades stuck out more than the other when I was swimming, and I had x-rays done just a couple of months later. My curve was in the lumber region, but I had a compensatory curve at the top, which was misaligning my ribcage. I had surgery less than 6 months later, and the curve had already progressed by about 15 degrees and was beginning to rotate as well. Before the surgery, I was very lucky and didn’t really have any pain unless I sat in one position for a long time – more than anything, I felt frustrated by the fact that I couldn’t get on with school and life in general as it wasn’t obviously impacting me at the time, and hated the fact that everyone was making such a fuss!
I can see you underwent scoliosis surgery to correct your scoliosis. How old were you and what impacted your decision to undergo surgery?
I had my surgery when I was 11, and was basically told that I didn’t have a choice – the curve was already past the point of being corrected by bracing, and if I didn’t have the surgery it would continue to progress. The only other options I had were to wear a brace for a few years and then have the surgery, or to basically wear a brace for the rest of my life. As I was already tall and still growing, I think they were concerned that it would get worse quite quickly.
How did you find recovery and are you happy with the results of your treatment?
That is a very difficult question to answer, as the recovery process was quite a long one. I had to wear the brace for 6 months after the surgery, 23 hours a day. During this time I couldn’t do any sports or exercise except for walking, and it was probably another 6 months to a year after taking the brace off until I was back to full strength. I found it was more about pacing myself and learning my new limitations, both throughout a day so as not to exhaust myself and through the 6 months.
For me, the worst part of my recovery was the first 8 days after my surgery when I was in hospital. Not only did I have to adjust to walking and sitting in a new position due to the new alignment of my spine, but the two worst parts of the entire procedure and recovery in my opinion were here: removing the chest drain, and adjusting to the back brace. The chest drain was inserted to remove the fluid from my left lung, as it was deflated and then re-inflated during the surgery and was there for maybe the first three days I was in hospital.
It was very uncomfortable being removed, but it was over quickly! The back brace, however, took a little more adjusting to – I found the first couple of nights I was wearing it actually quite painful and I couldn’t find a position that was comfortable, but once I was home, I got used to it fairly rapidly and after about 10 days, it had become like a second skin. The staff at Stanmore were absolutely amazing and I cannot thank them enough.
About 6 weeks after my operation, I started part-time attendance at school, gradually working my way up to full-time over 2 months. My school were absolutely fantastic and so supportive during my recovery, allowing me to leave lessons a few minutes early to avoid the crowded corridors, providing me with somewhere to lie down if needed, and giving me full permission to steal the teacher’s ‘comfy’ chair (very satisfying!) in each lesson as they were higher than the standard classroom chairs, which I needed to maintain a 90 degree angle at the hip when I sat down.
I also still can’t believe how accepting and thoughtful my classmates were at the time – I was never short of volunteers to carry my bag, and I remember feeling disappointed that I had missed the class Secret Santa draw, before getting a whole bag of presents that everyone had contributed to on the last day of term!
I don’t want to underplay it, because it was a difficult time that took a lot of strength, determination and codeine, however I am super happy with the results of my treatment – it was definitely the right decision to have the operation at that time, and anything negative in the procedure or recovery process is completely outweighed by the positives of the outcome.
How does scoliosis affect your life now, post surgery?
Scoliosis doesn’t impact my daily life.
I rarely have to think about my surgery, and only have to take a few precautions: my restrictions are that I can’t lift more than 10kg, and I can’t trampoline, ski, bungee jump or sky dive – the last two aren’t exactly at the top of my list!
I have found that my hip flexibility has been slightly reduced, meaning I have to find some ‘alternative’ dance moves which always causes amusement amongst friends, but it doesn’t stop me from doing anything I want (exhibit A : the walk)! It doesn’t bother me, as I know it would be much more reduced had I not had the surgery. The only thing that I find irritating is that one of my feet is warmer than the other as a result of severed nerves, so my right shoe always wears away faster inside. Particularly annoying on flip flops!
Although I was upset about them to begin with, I am now incredibly proud of my scars. I started off trying to cover them up and felt quite self-conscious about them, but got to a point a few years ago where I didn’t care anymore and started wearing bikinis or shorter tops that showed them off. They have become a part of my body that I don’t want to get rid of or change, and some of the reason I want to raise awareness of the condition is that I want people living with Scoliosis to have confidence in their appearance too.
Tell me a bit about the Back the Back Walk, how did you come up with the idea and what motivated you to organise the event?
I love being outdoors, and I was planning on doing a long walk in my break between school and university this year. I was thinking of doing it for charity and being sponsored, but wasn’t really sure who to do it in aid of, or where to go. The event kind of started as a joke, as I was looking at National Trails in England and Scotland and remembered that the Pennines were often referred to as the ‘Backbone of Britain’, and thought I could walk for a Scoliosis Charity (can’t resist a pun!). It was only after I mentioned it to a few people and got a really positive response about the idea that I decided to go for it! Only one of the longest (268 miles) and most challenging of the National Trails!!
I set up Back the Back Walk for several reasons. On a personal level, it is a way of me thanking all the people who helped me, both in and out of hospital, on my road to recovery. There is, however, a much bigger purpose for the walk: this is a chance to help others going through treatment, not only by raising funds for the Royal National Orthopaedic Hospital Charity and Scoliosis Campaign Fund (Scoliosis Association UK and British Scoliosis Research Foundation combined), but hopefully by inspiring them – I am proof that the surgery works and that Scoliosis doesn’t have to have an impact on your life. The main goal for the walk, however, is to raise awareness of Scoliosis, and to get people talking about it.
What are you most looking forward to about the event?
Initially, I was looking forward to the walk itself, but having spoken to people like you who want to get involved or support the event, I can’t wait to meet everyone along the route!! I cannot believe how much of a positive response I have had, both online and in person – thank you so much to everyone who has sponsored or signed up, and for everyone who has contacted me to show their support!
Also, a huge thank you to Diggle House Farm, Hebden Bridge Hostel, The Tan Hill Inn, The Cheviot Hotel, Clennell Hall Country House, The Teesdale Hotel and St Marylebone Parish Church for their support of the event!
Have you taken part in any other challenging events like this since your surgery? If so, what were they?
I have completed both my Bronze and Gold Duke of Edinburgh Award, but have never attempted anything on this scale before! I think my most impressive achievement however, although not changeling in the same way, was probably winning the 100m A team race at school just 8 months after my operation.
Tell me a bit about how you have been / will be training and preparing for this event?
Walking; lots of it! As well as going for long walks both with and without bags on my days off, I have been trying to fit as much additional walking in to my daily life as possible. I even stopped insuring myself on the car so I would have to walk to work or the town centre near me! I have also been doing a fair amount of yoga and other core strengthening exercises as I will be carrying a relatively heavy bag.
Finally, how can others get involved, sponsor you or follow your progress?
The best thing to do if you want to get involved in any way is to head over the website www.backthebackwalk.org – all the information you will need is there!
The walk, beginning on International Scoliosis Awareness Day 30th June, is open for anyone to join. Whether it is for an hour, a day, a week or the entire 19 days, everyone is welcome! If, however, you can’t make the walk for whatever reason, there is also going to be a launch concert at 6pm on Saturday 22nd June in St Marylebone Parish Church, London (tickets available on above website). To keep up with the event, go and give the Back the Back Walk Facebook Page a like!
If anyone has any further questions, please feel free to drop me an email on [email protected].
I’ll be taking part in the Back the Back Walk on Scoliosis Awareness Day and I can’t wait! I’ll be sure to keep you updated on my blog and Instagram page.
I had scoliosis surgery in 2010 and blog about my experiences living with scoliosis. My aim is to raise awareness of scoliosis and help and inspire others with the condition.