I’m Vivek Gohil, I’m 30, and I live with Duchenne Muscular Dystrophy. My life goal is to leave a mark, make the most of life, and help others along the way. Although it’s daunting, I never worry about the future.
“A thing isn’t beautiful because it lasts.” (Avengers: Age of Ultron, 2015)
You may think that my life would be difficult which it can be. However, I have a happy active life that has grown through hardships. I don’t actively think about my disability daily, it’s just a small fragment of myself. Humour is the way that I cope with life. I’m generally a calm, positive, and focused person. My life experiences have molded me into the person I am today. It’s been a wild rollercoaster ride, I’ve experienced the downs of depression, anger, fear, and the ups of contentedness and peace. Growing up I never would have imagined that I’d have the life that I do now.
As a teenager, I rarely spoke and faced confidence issues, as living with a life-limiting condition made me feel that there was no point in trying hard at school or making friends because I would die early. I was misdiagnosed so I didn’t receive the best or appropriate care, which meant over time I had to leave 2 schools. I have written this quotation in a previous blog, but it perfectly encapsulates my mentality at a young age: “Coping with the death of my previous life & loss of the future I envisioned was the hardest event in my life”.
I’ve always been a gamer. The first game that hooked me was Super Mario World on the Gameboy Advance. Gaming was the ideal outlet for me to cope with my deteriorating muscles. Games grant me a sense of freedom, escape, and abilities that I obviously don’t have in reality. Reading comic books is also a passion of mine, they taught me about strength, resilience, and not giving up.
My life changed when I turned 18 because it suddenly dawned on me that I was living longer than even I expected. I found myself feeling lost, and thinking “what do I do now?” I had entered uncharted territory. I never planned my future because I was surprisingly comfortable with the knowledge that I wouldn’t be here after 15. It was terrifying but it was my first chance at freedom.
After leaving University I started working with the charity Muscular Dystrophy UK (MDUK) which wouldn’t have happened if my Mum didn’t encourage me to join. Through taking part in investigations to improve life for disabled people or doing interviews with local news or BBC news, I slowly began to feel confident and I found my voice again.
I started writing a lifestyle blog in 2015 to spread awareness of adults living with Duchenne. MDUK was luckily contacted by Microsoft because they needed a gamer who could test their new Xbox Adaptive Controller, so they asked me. It was fortuitous because during this time I was having problems with gaming due to the then released PS4 console with a drastically different controller. It was heavier, bigger, button positions had been changed, and I found the buttons and sticks difficult to press. These issues led me to decide to completely give up gaming, Mum noticed that I was depressed as it was only then that I realized how important gaming was to me. So, I had to find a solution.
It was only then that I discovered accessible gaming, I now didn’t feel alone in my quest. I contacted the Gaming Charity Special Effect who assisted me in finding the right setup so I could continue gaming. We went through multiple iterations and multiple home visits but we finally found the perfect setup.