Well, 2021 has arrived, but we are still dealing with the ongoing ramifications of the previous catastrophe of a year. Those of us in disability communities remain in physical isolation, along with many others across the globe. Time goes on, but in many ways, it feels like it’s stood still for the past 11 months.
It’s funny just how distant everything that happened before last March feels. A year ago, I was struggling to decide between three events planned for the same weekend in April: a friend’s wedding, a comic con, and a play I’d auditioned for. Little did I know that all three events would be canceled, or that we’d still be dealing with the impact of a global health crisis a year later.
I’m usually one for optimism and humor, but I’d be lying if I said I wasn’t drained mentally and physically. Some days I feel like Ben Wyatt in “Parks and Recreation” when he’s stuck at home and becomes obsessed with making claymation short films. Though I haven’t developed any new hobbies during my time in isolation, I have found myself spending late nights watching YouTube videos of Zoom calls between “Lord of the Rings” cast members and bursting with nostalgia.
OK, that I don’t regret at all.
For me, the hardest part of this experience has been maintaining a healthy balance between work and life. I love what I do and the people I work with. And when I consider the economic pitfalls of the past year, I’m especially grateful to still have a job.
Yet, without the luxuries of movie theaters, going to restaurants, hanging out with friends, and traveling, I’ve been struggling to find things to look forward to on the weekends. Yes, I have a robust collection of books, comics, movies, podcasts, and streaming services, and I love all these things. However, there aren’t enough stories in the world to compensate for real human interaction. I am a nerd who loves to spend time alone consuming stories. I’m also an overtly social being who loves to be around people. Yes, we exist.
Despite the ongoing dread we’re all experiencing, I have managed to find silver linings. While I can’t wait to resume in-person gatherings, I have been utilizing virtual services to connect with people. Through monthly Cure SMA socials on Zoom, I’ve strengthened existing relationships and formed new ones. Every one of these meetings has been uplifting and stimulating, giving me something to look forward to every month.
I’ve also spent countless hours doing calls and video chats with friends in and outside of the SMA community, and adamantly defending “Wonder Woman 1984” as a good movie against all my friends who hated it. I don’t care what anyone says, that opening scene on Themyscira is fantastic.
Even with a new calendar year, we’re still living through a time of uncertainty and often existential dread. Maintaining my sanity as a disabled extrovert in this day and age is no easy feat, and there are days when I don’t succeed and play Sam’s speech from “The Two Towers” on repeat. Yet, just as the mighty Aragorn says in the same movie, “There is always hope.”
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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