MDA Ambassador Guest Blog: Unexpectedly Finding Nakama

34-year-old Megan Jennings was diagnosed with SMA at the age of 18 months and was raised to never let her diagnosis hold her back. Megan has a bachelor’s degree in Theatre & English with an Emphasis in Creative Writing, as well as experience in dance and graphic arts. She works as a freelance writer, artist, and actor under the name of Sybil Thorn; and often volunteers with both MDA Let’s Play and local inclusive fine arts groups. 

There is a Japanese word, nakama「仲間」, that loosely translates to “friends, teammates, or comrades” but denotes something more than friendship—recalling a close, family-like relationship that one chooses for oneself.  Growing up, I was blessed to have nakama in the form of an extremely supportive family that included an older brother, with my same diagnosis of spinal muscular atrophy (SMA), who prided himself on making my path a little bit clearer as I navigated life with a neuromuscular disease.  He fulfilled the need I didn’t even realize I had for a community of peers who could relate to my experiences with a disability, and, for this reason, I had never really sought out any other available support groups.  Honestly, I was also always a bit reluctant to join such communities because of what I imagined them to be, which was a place for someone like me—a “fixer” personality—to lose her core positive beliefs amongst the negativity that would surely be paramount.  Throughout my life, I have been taught not to limit myself in any respect and, in my youth, the idea of having a social group predominantly designed for individuals with disabilities felt limiting.  It is for these reasons that when I first saw the MDA Let’s Play flyer a few years ago I wasn’t fully convinced, but despite this I wanted to give it a try anyway.

Megan Jennings, AKA: Sybil Thorn

I never really considered myself a gamer, so I didn’t know how well I would fit in.  I always loved playing boardgames and card games with my family during “Family Game Nights”, but my videogaming experience was somewhat limited.  I had grown up cheering for my brothers as they played the traditional video and computer games that were available during that time, and my brothers worked hard to adapt the experience the best they could to help me be involved. However, as I grew up and went on to college, I found out that other people—including well-meaning friends—had a much harder time incorporating me into their gaming community.  Fast forward to my introduction to MDA Let’s Play via that flyer and you can see where my reservations came from.  If gaming was already so frustrating in person, then even the thought of participating virtually was daunting.  Putting my reservations aside, I decided to join the group and give it a try – and I can’t tell you how glad I am that I did!

So, what is so special about MDA Let’s Play that it took this unsure participant and made me into an enthusiastic community member who is dedicated to doing whatever I can to help facilitate the group? Upon joining our community, I immediately learned that whether one is a gamer or not, fitting into our inclusive family-friendly group is a given – as long as you are there to have fun.  Gaming together in MDA Let’s Play is great because our members, whether living with a neuromuscular disorder themselves or not, are all enthusiastic about inclusivity in gaming and eager to support MDA as they play, often actively seeking out accessible games and ways to make games more accessible for each other.  Everyone is very understanding of the limitations and difficulties that may be experienced by our members while also appreciating the strengths that each individual brings to the group, making playing together a pleasant experience!

Playing Among Us, one of the most popular games within the MDA Let’s Play community.

While our group may have started with gaming, we do so much more than just that!  Regularly throughout the week, you can find members online together doing art, watching movies, listening to music, or simply just chatting.  In our community, everyone supports each other and we have become somewhat of a family, a nakama,—an ever-growing one at that—one in which new and old members alike are always welcomed and supported with open arms!  Every single person in our community is free to offer or ask for support and advice as they feel comfortable, without feeling pressured to do so, and know that they will be heard.  On a personal note, the “fixer” part of me is relieved to not feel the weight of responsibility—the pressure to always have an answer to every need—that I had dreaded I might feel in such a community, as we all offer support to each other in this safe space. This has allowed me the freedom to discover my strengths in sharing my experiences and advice in support of others, bringing me much joy.  The support of our community is such that even if you just need to vent, you can feel free to do so without fear of judgement. (And let’s be honest, when living life with a   neuromuscular disorder, sometimes venting is exactly what you need!)  Having always relied on my family, particularly my older brother, for this kind of thing, I honestly didn’t realize what a relief it would be to have a whole community of people I could rely on.

Art created by Megan, AKA: Sybil Thorn, for the MDA Let’s Play community.

MDA Let’s Play is now such a huge part of my life that I can hardly believe that I almost passed up the opportunity to be a part of it!  The people I’ve met through it have become some of my closest friends, people I know that I can rely on through thick and thin.  In the years since I joined this amazing community, my life has had its fair share of highs and lows—MDA Let’s Play has been there to support me through all of them.  When things are good—like when I adopted a new puppy—they celebrate with me, when times are tough—like when my older brother was very sick and in critical condition in the hospital—they bolster me with strength through them, and whenever I become less active in the group than normal, they check on me to make sure that everything is okay and ask if I need anything. MDA Let’s Play is the type of community I am happy to be a part of and feel truly blessed to be able to serve!—After all, where else (except your own family, if you are as blessed as I have been) can you find such a fantastic group of people who accept you for who you are, strengths and limitations and all, and have a ton of fun playing games to boot?  At MDA Let’s Play I have found nakama when I wasn’t even looking for it!