This post is for World Duchenne Day, which was on the 7th September (It’s the 8th September today but please bear with me).
I want to share the truth about how Duchenne Muscular Dystrophy (DMD) has allowed me to become the man I am today and increase awareness of DMD.
It was a difficult road for me to initially accept my DMD as a child/teenager; I lost a huge part of myself so the loss of walking completely changed the trajectory of my life. I felt my life was over and I was worthless, this depression was more crippling to me than my DMD. My Mum has always been very supportive and open to giving me the truth to all my questions along with discipline when I became jealous on my sister doing what I could not. I am glad this stopped me letting bitterness or anger consume my family’s life or mine. It was not fair for me to be angry on able-bodied people, as they cannot help being born that way.
The years between the ages 13-15 when I was bed ridden due to the lack of a comfortable wheelchair, this period was tough but also strangely good for me. I discovered comic books and videogames so I finally found an escape from the all-consuming disease. It opened me up to imagination, which has now given me the ability to solve problems or understand my behaviour and others. Around this time, my parents divorced so I ignored the problems with my disease and I learnt to cope quickly so that I could support my Mum and sister. This reminded me that everybody has issues to deal with in life, be it physically, mentally or emotionally. I am not suggesting it is wrong to be upset about DMD but I have discovered that it should not tie into my self-worth or body image.
The periods of being alone in my room forced me to look inwards to discover my inner strength, strength that everyone possesses and it also enabled me to stay calm and focused to let my inner compass to guide my outer life.
I think what helped me start accepting my DMD was during college, I realised that I have the same abilities as able-bodied people too. To put things in context I went to a special needs school before college. Initially the school helped me to accept being a disabled people but towards the end, I lacked confidence and had a belief system that I was not as good as able-bodied people.
Joining Muscular Dystrophy UK & Trailblazers was the reason that I found my confidence and worth. Over the many campaigns, I have been part of: Cinemas, Transport, and Airlines. So, the faith MDUK had in others and me pushed me to use my voice and fight for my rights. The reason I become an Advocacy & Peer Support Ambassador was to honour my life experiences and realise that everything I’ve been through could help my peers cope or create awareness to improve the lives of disabled people.
I’ve finally found the secret, that self-image is not what people think about you but how you see yourself. Changing your thinking can change your life. You can turn the worst into the best by thinking of hurdles as opportunities to test how well you can adapt. It is in the darkest time that your power is illuminated.
The man I’ve evolved into could not have happened without Duchenne Muscular Dystrophy, I can now finally say that it is a positive part of me and that I’m grateful for all my strength or abilities.
Thank you for allowing me the chance to reveal my inner self in a constructive way that increases awareness of Duchenne Muscular Dystrophy.