There is a new film on Netflix about a young man who lived with Duchenne Muscular Dystrophy, “The Remarkable Life of Ibelin“.
I have heard great things about it, but haven’t watched it, I’m not sure I’m emotionally strong enough right now. But I would encourage anybody who’s interested in Duchenne to give it a try. I also want to say well done to Netflix for making the film and raising awareness.
The film does sound like it echoes some of my experiences. The internet, communities and people I’ve met through it have definitely helped me through difficult times, and made me feel more “equal”.
I was never a World of Warcraft player, the last Warcraft game I played was “Warcraft: Orcs and Humans“! But I did create strong connections with fellow Dreamcast game players on a text forum.
Following this I joined the NASA WorldWind online community. This was a group of extremely intelligent and respected developers and other volunteers, they didn’t know my condition. I worked as an equal and was welcomed into this community, eventually becoming the manager for the open source community and working closely alongside the NASA project manager.
I’m not sure any of these people realised I was also suffering from agoraphobia and regular panic attacks. But they helped me focus on something important and I made friends, even though I was housebound.
I was also very lucky myself to be in a Netflix show, if only very briefly, Requiem.
I would also like to recommend the film “A Life Worth Living: Pushing the Limits of Duchenne“. This features two of my friends, Mark and Jon. Mark lived into his 50’s and was someone I looked up to, always having a smile on his face and a joke at the ready.
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