2021… Never thought 2020 would come to an end, but here we are! While we are still very much in the fight against COVID, there is something rejuvenating about starting a new year. I am looking forward to watching the MGA grow as we continue to adapt to this new-found way of living. There will be challenges, there will be mistakes, but there will also be improvements, advancements, and developments. I’m eager to contribute to this organization in a positive way and learn from my fellow MG community members. What excites you about the upcoming year?
As MG has taught me, it is difficult to set things in stone, and for that reason, new year’s resolutions have never been my cup of tea. Instead of resolutions, I try to think of fulfilling certain dreams or at least taking steps to achieve such dreams. Maybe it’s just semantics, I don’t know, but I’d like to think that there aren’t any deadlines for my dreams.
When I was diagnosed with MG, I realized that much of what I wanted to achieve was no longer a realistic option, physically speaking. It’s not like I was concocting a fairytale ending or anything—I simply just wanted to be a kid. Play volleyball, dance, sing, join clubs, etc... Ultimately though, my priorities and goals shifted and I created new dreams.
These so-called dreams sure didn’t feel like dreams at the time. Everything was a chore, a frustration, a burden and I had 2 full-time jobs starting at 14: to be a “kid” and to restore my health. You know the saying, “when one door closes, another one opens?” That is sort of how my life has played out. MG shut down some dreams but also launched bigger and better ones than I could have ever envisioned.
So, what is it that I’m actually trying to say? First and foremost, I don’t think anyone planned for us to be where we are today. Remember when we thought two weeks of lockdown was going to be tough? It’s almost laughable at this point. But when 2020 didn’t go according to plan, we all had to adapt. We are creatures of habit, and when our routines went out the window, we found ourselves lost, uncomfortable, scared, and disoriented.
The fear of the unknown can be overwhelming, trust me it’s my specialty. But maybe the unknown is thrusting us into space we never would have encountered otherwise. When I was shoved into this myasthenia gravis community, I had no idea what I was doing. Perplexing and unsettling as it was, it made me live and think outside of the box. I’m unsure if the lifestyle we live today is temporary or permanent, but I’m going to try my best to welcome and embrace the uncertainty.
The following blog post was written by Meridith O'Connor, St. Louis Program Coordinator for the Myasthenia Gravis Association.