Isolation is a term that’s come up a lot in the last two years. But when you’re a person with a disability, it’s not just something that comes up at the onset of a global pandemic.
For me, feeling isolated started pretty much from the moment I understood I was different from anyone else. From the moment I understood I was disabled. The internet was not quite a thing and social media definitely wasn’t. The only people I knew were those in my small community: the kids at school, my teachers, my parents, my family. That was it. And none of them were disabled. I didn’t see kids like me on TV. I didn’t read about them in books. I didn’t see them on the movie screen as I downed a giant bucket of overly-buttered popcorn (back then we didn’t have streaming services, kids).
Even without whatever thoughts or feelings I may have been having about my disability on my own, growing up not seeing anyone like you or not knowing anyone like you creates an almost automatic feeling of isolation. Of being “other” and being different.
Fast forward to today and I’m very grateful for social media in that it’s given me the opportunity to connect with so many other people who are like me. With so many other people who have the same struggles and thoughts and feelings. Who have the same experiences. It’s undoubtedly lessened that feeling of isolation.
Or at least it did until 2020 came along. I don’t need to reiterate just how pissed off and discarded I felt for most of 2020-2021. That all lives in many other posts on this blog. But once that subsided, for the most part, what I didn’t expect was the even greater feeling of isolation that was going to follow.
Not knowing how COVID was going to function, if it was ever going to go away, if the vaccines were going to keep it at bay for good for me…there’s no way I or anyone could have known how this was going to turn out. And unfortunately, with the way it has turned out, I don’t just feel isolated because of my disability, I feel isolated because of COVID now too.
I still have to be super careful. Can I physically go outside, say “screw it”, take off my mask, and do whatever I want? Of course I can. But if that did lead to my getting COVID, I have no idea how that would turn out, and my life and my health are just not something I’m willing to gamble with. I already have so many physical challenges that I don’t want to have even the smallest chance of having any more or god forbid, any kind of neurological symptoms. So it’s not a full choice for me.
So my life still looks similar to how it did in 2020. Only this time, I’m often the only one wearing a mask places. I still have to think about every activity that I do or person that I see whenever the numbers get bad again. I’m not eating indoors (which when you live somewhere that it’s over 100 degrees in the summer, is quite a challenge). I don’t get to go to any big summer concerts. There are no weddings or big events on my calendar. I don’t know when the next time I’ll be able to get on a plane is.
If I could illustrate what the feeling looks like, it would be me sitting in a chair, facing a window, wearing a mask and everyone in front of and behind me is buzzing around maskless without a care in the world. My social media feeds often make me sad and increase that feeling of isolation, so I try to take breaks from them.
The other facet of it is that because I’m often the only one, or one of the few, doing these things, I get stared at. I know people are judging me, especially where I live now where the COVID denial has always been strong. I know people in all facets of my life think I should be “over it” by now or that I’m being scared or too cautious. Pre-COVID I used to get stared at for my limp, now in the COVID era, I often get stared at for wearing a mask first. A fact that is both infuriating and freeing at the same time. I’m so used to standing out because of my disability that people might as well stare at me for wearing a mask now too!
I don’t want any of this to discount the incredible number of loving and caring people that I have in my life. My very best friend from high school and I live near each other again and we are both completely on the same page about everything, and I can’t say how much it means to have that. And though I may often feel super alone and isolated from the world because of my MD and COVID, I still have an amazing number of wonderful friends who do everything they can to understand what I’m going through and to keep me safe (and the ones who don’t are no longer people that I call friends).
I try to remind myself it’s not just me. Maybe this particular set of things isn’t commonly shared right now, but we’ve all been affected by the last two years in one way or another. We all have our loads to bear, our struggles, the things about us that we think no one else understands. I try to find the similarities I share with everyone and not just the differences. I try to remind myself that I’m more than just my disability. That just because I’m different, doesn’t mean I’m less than. I try to get up from that chair and join the people around me, even if I’m the only one wearing a mask while I’m doing it.