Except... it's not. Not for me, at least.
This blog is not meant to call anyone out, or make people feel guilty. This is a HUGE adjustment for everyone (myself included). But this (or at least a version of this) has been my reality for 22 years now. Every time I go into the hospital, I've had to wear a mask whenever I leave my room. And boy it's uncomfortable, it's embarrassing, it's hard to breathe, and my glasses fog up. Noelle always has to remind me (and sometimes force me) to put my mask on when I go out, because it sucks! I hate wearing a mask. It feels like I'm labelled a sick person and people want to stay away from me. It makes me obviously sick. But it's necessary. And even if I can't infect others with my CF or my sickness during any given hospital stay, I know that it helps prevent me from getting any sicker from others.
I have had to stay 6 ft away from fellow CF-ers, including my friend Natalie. When we were finally able to meet in person after talking online for years, it was really kind of devastating not to be able to hug (or if we were feeling extra formal, even shake hands lol). When I participate in CF events, like the Climb for a Cure or Great Strides, I have to be mindful that there may be other people with CF there, and I am not allowed to get too close to them. Sharing germs can be incredibly dangerous for us, and now we see that it can be just as dangerous for everyone. It's hard always being on alert. You can't really ever let your guard down.
I've never been able to touch things, either. That sounds weird, but with CF I've always been in what's called contact isolation, which means I can't touch things that may have been touched/used by others, especially those who are sick. This meant not being able to go into/use stuff from the craft room in the hospital. Even if it was something that could be disinfected, my parents or visitors had to handle it, and I was not allowed to participate in a lot of things growing up because of that. That increased the feeling of isolation and it sucked.
So trust me when I say, I get it. Welcome to my life. Honestly, it's kind of nice to have the whole world experiencing this feeling. Boy that sounds mean and I'm not saying I'm glad there's a whole pandemic, but it's always easy for people on the outside to tell you to do something, like Noelle making me wear a mask or my parents nagging me to take my medicine, but now that everyone is experiencing what I've had to experience my whole life, I feel validated. People might understand a little bit more.
Honestly, it's sometimes hard to sympathize with people but I recently saw a friend's Facebook post talking about their first experience wearing a mask while working and they talked about how it was hard to breathe and was very uncomfortable and I laughed. I wanted to comment "Welcome to my life! See how hard it is?" but I remembered that this isn't their normal. But this is our shared reality now, and I need to adjust just as everyone else does. It's nice to have people to sympathize with and who appreciate my struggles just as I appreciate theirs.
Recently, my Facebook memories showed me hospital prom 2015, where Noelle and I posed with masks on our face. It's a cute picture! One of my favorites. Now I'm seeing similar pictures with people's weddings (oof. Might have to recreate it for our wedding, too), and again I just kind of smile at the thought of people going through the same thing I've had to go through. I've had proms canceled, a confirmation, and I've put a lot of my life on hold thanks to CF. Life is a struggle, and thanks to COVID-19, we're all struggling. Thanks, COVID-19...
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| Hospital Prom, 2015. We wore masks before it was cool |
I also keep thinking of the movie Five Feet Apart during this time, and at that I do laugh and throw my arms up. People romanticized that struggle, the sickness, the devastation of not being able to be close to your loved ones. One year later, everyone is living that. It isn't so romantic or nice now, is it? It just makes you step back and think about how this really is people's reality. This is my life. I'm glad to have you here.
But of course, I'm not. I want this reality to pass. It's strange, because it won't pass for me ever, really. Yes, I have gotten a lot healthier (ironically). I haven't needed to stay in the hospital or wear a mask or be in situations where I have to stay 6 ft away from people. But then that took over and my experience with that became full time. It was scary when that set in. This pandemic has changed everyone's lives. I just hope that it changes them afterwards, too, and that people can appreciate just a little bit more what living with cystic fibrosis is like.
