The Value of Life: Being Vulnerable During Stay At Home Orders

I don't often use this blog to be political, but I think now is an okay time to talk about a pretty hefty topic. It seems as though the COVID-19 pandemic has illuminated the values people place on life, and whose lives are in fact valuable.

This is a big statement and I'm going to try to articulate my thoughts as best as I can. Please be patient with me as I may circle around some ideas throughout this piece. I also want it to be clear that this is by no means a black and white issue, and at times I am playing Devil's Advocate, because it's very important to consider everything.

The idea of keeping vulnerable persons (people with underlying health conditions such cystic fibrosis---people like myself) and the elderly inside to keep them safe is a good idea. One I fully support. But I've seen a lot of people say how we should allow those who are young and healthy to be out and about, even recreationally. In fact, Governor Tim Walz is flirting with this idea with his Stay Safe Minnesota order. We are blurring the lines between giving people responsibilities and giving people freedom. While I and the rest of the vulnerable population have to stay home because we are at risk, others are starting to be allowed to freely go about their day, even return to work if they so choose.

Now, again, this isn't inherently bad. I want to stay home. I plan on it. I agree that those who are vulnerable need to stay home right now. I support that! But. The language we use must be chosen carefully. The orders should not be allowing non-vulnerable people to resume business as usual. [And yes I'm aware that life is not just continuing as usual, but we are starting to. If not in MN necessarily, then other parts of the US and the world.]
I always like to read the comments and replies people make on news sites' social media posts pertaining to stay at home orders and the pandemic as a whole. The picture below is a good example of this, and I've seen a lot of similar comments on WCCO's and the Star Tribune's coverage of the stay at home order. They show us how people think the vulnerable should stay home while the rest of us can return to our lives. And the revised stay at home orders (or the eliminated stay at home orders, the orders replaced with "Stay Safe" orders) seem to support this idea. If you are vulnerable, you aren't valuable.

Just one of the many comments protesting staying at home

I don't think Walz truly thinks this. I don't doubt that Minnesotans think this, but I like to believe Walz just might not be thinking this through all the way. Why do I have to stay at home while you can do more things? Your freedoms shouldn't require my repression. I'm sorry, but we are not living under a fascist dictator in Governor Walz. Your "rights" to go to the bar or to the salon aren't real when it is at the cost of the community's lives. Think of other people.

If we are starting to resume our normal lives, even if only "healthy" people are starting to resume their lives, then the number of cases will only rise. Then the risk will be even higher for vulnerable people like me. It isn't only up to me to stay home and stay healthy. Everyone needs to. It does not make sense to allow healthy people to go out and risk getting COVID. Because they'll continue to spread it, and it will continue to reach us. And not only us, but everyone. Because everyone is at risk and every one matters (boy I'm really trying to avoid saying all lives matter because yikes).

And COVID is so strange! The majority of COVID-19 patients with cystic fibrosis have reported mild symptoms, there have been very few deaths, and only a handful needed ventilators or ICU care. And there are healthy 30-year-olds who have died from the virus. So why are we saying that the vulnerable groups have to stay indoors while the non-vulnerable people are allowed to start returning to their lives? We cannot measure value of life based on health conditions.

Of course this is only scratching the surface. This conversation goes well into pre-existing conditions in healthcare and universal healthcare and the like. While I agree with the practice, the principles of Stay Safe Minnesota are iffy. Everyone is valuable, everyone is at risk. We can't allow the privileged populations to go out and do stuff that is not deemed necessary while forcing the rest to stay indoors because that's their unfortunate condition. We don't have a choice, but everyone else does.
It is so easy for people to say "If you're scared, don't go out!" when it just is not that simple. I'm sorry that you want a haircut, I'm sorry that you want to see your family, I'm sorry that you want to go to sports games and graduate and have your wedding and go to bars and go to your job and have a normal life. But dammit, so do I. Your freedoms and your longing to return to normalcy are valid, but so are mine.

Welcome to my life

Well, here we are: wearing masks, staying 6 ft. apart away from people, and worrying about who might be sick and who might get us sick. What a strange world we're living in.

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...

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.