My name is Santana Gums and I have LGMD-2b. I live in Arizona and work as a Legal Assistant.
Back in February of this year, I attended the Arizona Muscle walk, which just so happened to be my first ever MDA event. Being new to the community, I wasn’t sure what to expect, who would be there, or how I would feel. So naturally I invited my best friends.
Santana at the Arizona Muscle Walk with friends Mackenzie, Savanna, Cece and Louise.
Upon arrival, I saw the most comforting sight for a person like me, and that’s other disabled people. Some were using wheelchairs, some with canes, and I had my walker. For the first time in the year that I finally started using mobility devices, I did not feel like the odd one out. The weather was perfect, the walk was doable, and the people were so kind and welcoming.
As I soaked in the experience, I realized that I felt something I had been longing for for a while, a sense of community. Not only were there other people dealing with similar struggles, but there were even more people who were there simply for support. Friends, family members, loved ones all gathered in one place to show that they are a part of the fight too. And that’s what community is. It is those who are willing to show up, not just when it’s easy or convenient, but every chance they get. Being present for those you know, and being open to those you don’t know.
After the walk, my friends and I sat down at a restaurant for lunch and had a conversation that I will never forget. As one of my friends broke into tears, I couldn’t help but do the same. There was an energy that had been felt by all of us – the tidal wave of emotions that come from being in an environment with so much love. As we reflected on the different stories, backgrounds and support systems that people shared, we were all in awe of the power of this community.
Having been diagnosed at 16 with LGMD-2b, a rare, progressive and, at the time, invisible disability, I had gone 8 years with little to no community that understood me. I fought a battle that I thought had to be fought alone, because how could anyone possibly understand what I’m going through. On social media, I found others sharing similar stories, but these people were scattered all across the world and not part of my daily life.
For the first time, I was face to face with people I had never met before who were fighting for the same cause as me. When you’re in these spaces, there’s an unspoken agreement, I am here for you and you are here for me. Being around people who were gathered together for a common goal, this was the first time I realized I am not fighting this fight alone. There are people fighting for more research, more accessible spaces, more opportunities and everything in between. And the crazy part to me was half of the people weren’t disabled themselves. To know that people care, even if it’s just one person who cares about what you’re going through, will change your life. The best thing I ever did for myself was reach out and let people know that I am here, and I just hope that anyone reading this who is going through something similar knows that the MDA is a place in which they can do that.
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