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    • #28652
      Alyssa Silva
      Keymaster

      For much of this year and last, I feel as though I’ve been sitting on the sidelines of life. The pandemic really put a pause on everything for me, and given the fact that things are still messy out there and I don’t feel comfortable resuming my normal life again, it very much feels like I’m watching others move on while I’m “stuck.” Of course, I’ve had good moments— great ones even— throughout this year, but right now I’m grieving all the things I’ve missed like showers, weddings, shopping, etc.

      Today, all of these thoughts came flooding into my head. I’m planning a huge photoshoot for my job that’s taking place in London next week, and this morning I was finalizing details when a wave of disappointment hit… I can’t be there with my coworkers. Aside from Covid, I’m too physically weak to travel these days, so all I keep thinking is, “another opportunity missed on account of SMA.” This narrative is all too familiar in my head, and ugh— it’s heavy to carry sometimes.

      I don’t really have any advice or questions for you today. Just thought I’d share my feelings in case someone out there reads this and resonates with me. To that person, you’re not alone. We’ll get through it just like we always do. That’s the beauty of resiliency. Thank you for letting me vent here!

    • #28654
      Blake Watson
      Participant

      I totally feel you. I had already started feeling a bit isolated right before the pandemic—and certainly after. Sometimes I feel like my whole life is on the computer and internet. I refuse to feel guilty about “screen time” though because using a computer is when I feel the most able, creative, and productive. In fact, I lean into it. For example, I’ve been attending Cure SMA’s evening socials for adults with SMA (a Zoom call) as one way to get some face time with other people. I also try to participate in some extracurricular shenanigans with my (remote) coworkers.

      Still, it’s hard not to think about all the things we miss out on. It’s a giant bowl of suck for sure.

      I say vent any time you want. That’s one reason I join SMA-related groups online. There is no one else who can understand better the things that we go through, all of the triumphs and failures that go along with having SMA. I don’t know most of you guys personally but you are my peeps nonetheless.

      • #28662
        Alyssa Silva
        Keymaster

        Thanks for sharing, Blake. Also right there with you on the whole not feeling guilty thing towards screen time. What you said is so true! It’s really the gateway to my work, play, creativity, social interaction, and beyond.

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