Monday 29th July 2019
The latest person experience story comes from Leanora Volpe
My name is Lea, and I am a member of the GB paraclimbing team. I have recently been preparing for the world championships which took place in July in France, but it has been quite a long road to get from where I was to where I am today.
I have ataxia and Ehlers-Danlos Syndrome. My conditions affect my balance, coordination and eyesight, and my connective tissues are fragile and unsupportive, so all of my joints and some of my organs are affected.
I haven’t always identified as disabled. Although looking back I’ve always had joint issues and wasn’t the picture of health as a teenager, my EDS wasn’t picked up until I was 21, after I experienced a big decline in my health and mobility.
As a teenager and through university I was really active and at various points I was competing in fencing, athletics and rowing. Competitive sport was a big part of my life. But when I got ill I had to stop everything and everything I heard made me believe that exercise was dangerous and difficult for people like me, so I lost the confidence to try. Health professionals advise people with EDS to do physiotherapy but the daily exercises didn’t feel meaningful or fun so I lost the motivation to do them.
The turning point for me was when my physiotherapist at the time told me to adjust my expectations about ever being able to do sports again. It was like a red rag to a bull and I signed up for a gym membership determined to prove him wrong. I had to start with just five minutes going really slowly on an exercise bike but I managed to build up the time I spent and started to incorporate strengthening exercises. As I started to get fitter I had more energy and I felt better in myself.
Then a friend told me about climbing and I decided to give it a try. I was so scared that it would be too hard or painful, and looking back it would have been a confidence boost to have the support of people around me to try new things and take risks, but after my first session I was hooked and kept going back.
Being newly disabled was isolating for a while and finding a new hobby helped me to reconnect with people in a really welcoming environment.
Nobody expects you to be super strong when you start out, so it’s a level playing field. People just cheer you on whether you’re climbing at the lowest difficulty or the highest difficulty. People barely bat an eyelid when someone comes into the climbing wall with a mobility aid or wearing a prosthetic leg – we are all equals and encourage each other regardless of ability.
After a year of climbing I found out about paraclimbing, which is climbing for people with various disabilities including visual impairments, limb differences or neurological and physical disabilities. There are lots of different categories, and mine is called ‘RP2’, which is for people with a range of moderate neurological and physical disabilities and can include anything from ataxia like me, to brain injuries, fused joints, paralysis – you name it! It’s a very mixed group.
I competed in the national championships and came second overall in my category. I decided to try out for the GB paraclimbing team and this summer competed in my first international competitions. I won the world paraclimbing master’s cup, and came third at the world championships.
It was such an amazing experience and I had a really brilliant time, and I enjoyed getting to meet paraclimbers from all over the world. I’ve learned a lot and am looking forward to next year. My ataxia is getting worse and it’s hard to deal with but there will always be a place for me in paraclimbing, which makes me feel more positive about the future.
Paraclimbing helps me feel proud to be disabled. I wouldn’t have this opportunity without my condition, and I wouldn’t have the friends I do now either.
My support network is really important to help me keep going – from my coach who adapts sessions to help avoid getting injured or too tired, to my physio who keeps my muscles and joints healthy and gives me advice about how to train safely, and my friends and family who spur me on when things are hard and believe in me every step of the way.
Getting fit again has helped me get back part of what makes me who I am, and it’s had unexpected benefits like helping me keep working, giving me more energy and helping me improve my balance and coordination.
Paraclimbers are really accepting of people’s different abilities and it’s an environment where it’s ok to find something difficult or have to take things slowly.
Before I was disabled I had trained for a marathon and was aiming to make the blue boat for Oxford. I would have loved to achieve my dreams in running and rowing but it’s empowering to have found something I can do and enjoy. It’s like I’ve left my old life behind and am on a different path now.
When your physical abilities are out of your control it can feel like a real loss. But to go from really struggling to get active again, to being the third best paraclimber in the world in my category feels amazing.
The most important thing for me was finding something I could do, and going at it with a huge amount of stubbornness and enthusiasm with a support network behind me. It’s not possible alone, and I feel really lucky to have stumbled across paraclimbing and had the opportunity and support to get active again.
In other news: If you have a story to share about why you get active and how it has helped you then we want to hear from you