Having LGMD2B has changed my life for the worse and equally changed it for the better.
I trained my whole life as a dancer. Dance was my art and the energy of my soul. When I was 15, my calves blew up double their normal size. The doctor gave me an anti-inflammatory prescription. The swelling didn’t go down for around two years. Despite being repeatedly misdiagnosed, I carried on dancing and worked around the physical challenges.
At the age of 18, I got into one of the best theatre schools in the UK.
A few months into my training I found I couldn’t rise up on my toes, and jumping was increasingly difficult. The school doctor and physiotherapist said they’d never seen anything like it before, and had no answers for me.
Every professional I saw had no answers. I didn’t know what to do.
I had to leave after my first year. I went through years of tests and, eventually, was told that I wouldn’t dance again. I wouldn’t be able to do a lot of things again. So I went away and travelled for two years. I climbed mountains, walked deserts, and crawled up thousands of steps to see temples and waterfalls. I promise you there are ways to achieve what you want. Adapting is key!
New Ways to Live:
I’m 26 now and I’m constantly facing challenges. I’ve accepted that I have to look after myself, that my body and mind need more care than most ‘young’ people. I still have such a social, vibrant and active life, I just have to do it my way, not the way anybody else thinks I should.
Every day I am faced with challenges that the majority of people around me don’t have, and it’s not just physically exhausting but mentally exhausting too.
I have a disability, but I am not only that. I am a writer, poet, teacher, radio producer and host, public speaker, a very good friend and a pro cup of tea maker.
The hardest thing about living with Muscular Dystrophy is the constant unknown. Once you’ve healed and dealt with one thing you can’t do anymore, something else pops up. It is important to know you are not alone. Your feelings are valid, don’t suppress the pain because it is real; but know that love, light and acceptance are not far away.
Although my life has been flipped upside down and I can’t express myself through dance anymore, I have adapted my skills and found other ways to form and deliver my creativity.
My goal is to help others accept and own their disabilities, rather than letting their disabilities own them. Writing and sharing the truth is another way of healing and it also helps others with their own experiences. The road to acceptance is a long one. There has been no lesson that has taught me more about life than becoming disabled.
I didn’t get to choose the cards I was given, but I am playing a good game with the ones I have.
Don’t supress emotions, but be proactive
Tatum: My biggest advice would be to accept things – sit with the pain, sit with the anger and the frustration. Don’t suppress it and put it to one side. After some time, you will become proactive with it and you ask, “Well, what can I do?” and “How can I get the balance right?” It takes years, but it does work out in the end. The advice I would give is: listen to yourself and communicate. Communication is the biggest thing.