30 With DMD: Finding My Life’s Purpose

Cure Rare Disease
5 min readJan 18, 2021

Written by Vivek Gohil; Read the original blog post here.

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.

My setup consists of a lightweight PS4 controller with easier to press buttons and sticks with 4 switch ports. This helped for a few months, but I wanted to have more control over my controller setup. Special Effect provided me with a Titan 1 adapter which allowed me to write scripts to remap buttons or create toggles (so I don’t have to press 2 buttons at once) and create my own combos. There was still one crucial element missing which related to fatigue, so I had a controller stand created for me so that I no longer had to hold the heavy controller.

In the past 2 years, I have been an active member of the gaming accessibility community. I slowly built up my profile over social media. Now, I’m an accessibility consultant who advises game developers on improving accessibility, specifically for gamers with muscle weakness. Surprisingly, through Twitter, I was contacted by the senior editor of the gaming website Eurogamer who asked if I would like to write monthly articles for them. This was surely a great opportunity to enter the working world.

I’ve also been a speaker at DeMontfort University for the past 2 years. I provide trainee nurses with a patient perspective of living with a life-limiting condition. I enjoy spreading awareness and demonstrating that you can live a full and active life. It’s not always easy as health issues have occurred along my journey, it’s a life of constant adaption.

Living with DMD has made me the type of person who likes to find solutions to the problems I face. Technology is usually my answer. My computer is my lifeline, keeping me connected to the outside world, allowing me to write blogs, and use social media to spread awareness of living with DMD. I type using an on-screen keyboard and Logitech G502 mouse with 11 programmable buttons and high levels of sensitivity.

I feel that I have now discovered my true purpose which is gaming accessibility. I have started a YouTube channel where I review games focusing on their accessibility settings and inclusivity.

2020 may have been a difficult year, to say the least, but for accessibility, it was the best year since the release of the Xbox Adaptive Controller in 2018. The level of accessibility settings available in recent games like The Last Of Us Part II, Assassin’s Creed Valhalla, Hades, or Spider-man: Miles Morales are ground-breaking. It’s an exciting time to work in the gaming industry and I’m blessed that my journey has led me right here. I’m excited to see what amazing things 2021 has in store for me and accessibility in general.

Learn more about Vivek Gohil and his accessible gaming advocacy on Twitter, his blog, or his Youtube channel.

Support Cure Rare Disease’s efforts here

Originally published at https://cureraredisease.org on January 18, 2021.



Cure Rare Disease

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