When I was 11 I found out I had a rare hereditary condition that damages the peripheral nerves in the body, which affects about one in 25,000 people. It weakens muscles, particularly around the feet, ankles, legs and hands, and the relay of sensory information to the brain. There are some treatments to relieve symptoms and I was advised to manage it by exercise.
Two years after diagnosis I had an operation on each foot to strengthen the outsides of my ankles. It required weeks of recovery in a wheelchair and months of physiotherapy. As my school wasn’t wheelchair accessible, I had to stay at home for six weeks. I spent months watching my friends play sport from the side-lines. It felt like I lost about six months overall, which is a long time when you’re thirteen.
Now, I’ve accepted my condition and I’m only open and honest about it. When something’s out of your control, I can’t imagine being any other way about it. I’ll never let it define me. It’s taught me to never make excuses and always find a way around an issue. I’m open about it now. I’ve also not let it stop me from pushing myself physically. In 2017, ten years after the operations on my feet, I wanted to mark the occasion so I took part in a 100km race called the South Coast challenge. It was incredibly hard to keep motivated and as much of a mental challenge as a physical one. In the end I completed it in 20 hours and raised almost £3,000 for Great Ormond Street Children’s Hospital in London.
If I can complete a 100km race, there must be so much more that I’m also capable of. I’ve not found my next challenge yet, but I’m certainly on the lookout.
Charlie Elves | Account Executive, Strategic Alliances | London