When Life-Saving Rules Make You Want to Die

This is the second in a series on the pandemic. The previous post, “Of Masks and Men, shared how most of the rules about masks, quarantines, and social distancing are almost certainly legitimate, regardless of their merits.

This post is not at all concerned with any legal or medical expertise. Instead, it is almost all personal reflection and reaction to rules lovingly designed to save your life, which unfortunately have the effect of making you want to jump off a bridge.

My Authority to Speak on This Matter

I have NO authority to speak on this matter, and that is the point.

This is NOT a post designed to give you good advice. This is a post designed to give you BAD advice. This is a post about BREAKING pandemic rules, and no authority is needed. It is also a post to explain WHY people break rules, and how two groups of people on this issue are going to have to live with each other.

My (Bad) Experience in Infection Control

Though I don’t have “authority,” I do have EXPERIENCE in breaking rules for my health — DECADES of it, in fact. What many readers of this blog may know is that I have a chronic respiratory disease called cystic fibrosis. Because of a genetic mutation, respiratory tissue is not able to regulate the movement of salt across tissue membranes, which causes the ordinarily smooth and liquid mucus that lines the lungs to become thick, sticky, and a breeding ground for bacteria.

For normal people with normal lungs, these bacterial infections are not very contagious. But among people with cystic fibrosis, were are VERY contagious to each other. For this reason, cystic fibrosis patients are not allowed to congregate with other cystic fibrosis patients. Cystic fibrosis events have been virtual for decades. There is a wonderful organization serving the cystic fibrosis community called the Cystic Fibrosis Foundation. It is located in the D.C. area where I live, but I would probably not be allowed to enter the building.

The Infection Prevention Guidelines from the Cystic Fibrosis Foundation, which have been in effect since at least 2003, include the following:

  • Six-foot rule: All people with CF, regardless of their respiratory tract culture results, should be separated by at least six feet from other people with CF in all settings.
  • Events and activities: The CF Foundation guidelines state that only one person with CF should attend any camp, educational retreat, or CF Foundation-sponsored indoor event.
  • Hand hygiene: All health care professionals, people with CF, family members and friends should wash their hands regularly – using alcohol-based hand sanitizer or antimicrobial soap and water when hands could be potentially contaminated with pathogens.
  • When in a healthcare setting:
    • People with CF should wear a surgical or isolation mask in all common areas of the hospital, such as hallways, elevators, and waiting rooms.
    • Disinfect surfaces before and after they are used by a person with CF.
    • Wash your hands with either alcohol-based sanitizer or antimicrobial soap and water before and after entering hospital or clinic rooms, doing procedures like pulmonary function tests (PFTs), and after coughing or touching common items throughout the hospital.
    • Help people with CF keep a safe 6-foot distance in all settings.

These are the rules that people with CF have had for decades. These are in addition to the regular treatments, medicines, doctor’s visits and all other manner of things that people with cystic fibrosis do daily. In addition to all that, I also have type 1 diabetes. Therefore, I have TONS of experience with weird rules.

My Decades of Experience With “The Rules”

Now that you know that I have experience in social distancing and infection control, it is now time to share how people like me deal with scientific and medically supported rules designed to guard my health and well-being:

I break them all the time. Now, I don’t IGNORE them. But I also don’t follow them perfectly either. It’s not that I don’t follow them because I “fail to live up to my highest ideals.” No. Not at all. Instead, I decide not to care. It’s not flippant. It’s deliberate.

Caveat: I won’t claim that my nonchalance is the “right” way to approach things. It may not be. I just need to provide some perspective for anyone who LOVED my last post about how social distancing and mask rules are “legitimate.” People who do not like (and do not follow) the rules that they are given are not “crazy.” They are not “uninformed.” They just value different things. If we’re going to get through this without one group ripping the other group apart (with latex gloves and plenty of PPE, of course), then we need to understand why people would disagree.

We need to get through this, because we’re all in this together.

Breaking Rules For Your Own Benefit

Growing up, because of cystic fibrosis, I regularly did breathing treatments and I regularly took my medicines. I didn’t do anything crazy like start smoking cigarettes or use recreational drugs. This basic aspect of cystic fibrosis health is required for anyone who doesn’t want regular month-long hospital stays.

However, I won’t even PRETEND to be perfect or consistent, even though I can say that I was “regular” in these habits. It is important to understand why.

Here’s a real-life situation: I have a very specific medicine that I MUST take in order to properly digest food because cystic fibrosis causes my pancreas to fail to produce the enzyme that breaks down fatty food. Let’s pretend I’m out with friends. Let’s pretend we go to a burger joint. Let’s pretend we all get our food. Let’s pretend I reach inside my pocket and ONLY THEN realize that I do not have my medicine.

What would you do:

  • Refrain from eating the Burger? Remember that it will give you terrible digestion and bad gas as soon as you get home? Kindly inform your friends that your chronic disease keeps you from eating the food that you just ordered?
  • Eat the burger. Don’t cause a scene. Have fun with your friends. Don’t allow your friends to feel give you that look of “concern” because of this sacrifice you are forced to make?

You bet I’m eating that burger. It’s a burger. I’m hungry. I’m going to have fun with my friends. Whoever shares a bathroom with me will just have to man-up and take it. If I discover the problem before I order, I might order a salad instead of a burger (to avoid the fat), but there’s no way I’m giving up on the small joys in life like eating food with friends.

This is the perspective that people need to understand when it comes to COVID-19. I certainly know people with cystic fibrosis who will refrain from eating that burger. They value different things, have a different perspective, and they may have the social skills to continue to have a good time, even as they sadly ask for a box to eat their microwave burger and soggy fries at home. Good for them.

But they are not me. Did I break a rule? Yes. Am I sorry I did it? Absolutely not. Is the person who shares my bathroom mad? You have no idea. Do I care? Nope.

Regardless of your opinion of this situation, we must recognize what this decision is. It is NOT a difference of opinion on “medicine” or “health.” It is a difference of opinion about how VALUABLE it is to have a good time with friends.

To illustrate this difference of opinion, look back up at the title of this section. Is it referencing rules that ARE for your own good, or is it referencing BREAKING rules for your own good?

The answer is simple: It depends.

This Is Not A Minor Issue

Perhaps a reader will think that this difference of opinion is not at all relevant to the issue of COVID-19. Perhaps they might think that this is an issue of life-and-death, and not some simple “bathroom” issue. Unfortunately, that’s just not true.

The fact of the matter is, there are many more “rules” to break with cystic fibrosis, many of which ARE a matter of life and death, especially when you treat them cumulatively.

On many occasions online, I’ve seen parents of children with cystic fibrosis wonder WHY their children will not take medicines, do breathing treatments, or follow doctors orders. “Don’t these children know” they ask in all seriousness, “That by following the doctor’s instructions, their risk of infection and pulmonary exacerbation will be significantly reduced?”

These parents say this as they wonder aloud why their high-school children with cystic fibrosis will PURPOSEFULLY skip their one-hour-long evening breathing treatment to go hang out with friends to watch people play bad music at a smoky bar that will leave them coughing and sick the next morning.

The answer is simple: It’s WORTH it. That’s how much people value their friends. What’s the point of saving your own life if the life you save has no friends, no fun, no joy, and no good times?

Do you see how this might be relevant to COVID-19?

This choice is even more weighted in favor of going out with friends when we CFers realize that not even following the rules PERFECTLY prevents suffering. Parents don’t realize that breathing treatments can sometimes make you feel WORSE when you move the mucus out of your lungs, but cough yourself into a splitting headache. They don’t realize that even if you are perfect on treatments, the common cold can knock you straight back down to zero.

As kids with cystic fibrosis quickly learn (and as parents of kids with cystic fibrosis hate to recognize), life and health is not “fair.” Sickness comes to all, even those who do everything right.

People with cystic fibrosis don’t live to do treatments. People with cystic fibrosis do treatments to live. That is why people will break the rules to hang out with friends or do something adventurous or even just plain ol’ fun.

The point of all the rules is to LIVE and hanging out with friends and breaking rules is what “living” IS.

Not All Rules Are Created Equal

With that perspective, now let me give you a good truth to remember. Not all rules are created equal.

On the one hand, this truth is for people who are ALL ON BOARD with social distancing and flattening the curve. It’s for those who follow Dr. Anthony Fauci on twitter, and feel “sad” when they see crowded beaches in Florida on news photos (even though they live in Ohio). To them I say: CHILL! It’s okay when people don’t follow all the rules! Not all rules are created equal!

But on the other hand, this truth is for people who think that COVID-19 is a myth and masks are for “sheep” and they won’t lay down when some “suit” in Washington decides to take away freedom. To them I say: CHILL! Some of these rules are actually EXTREMELY useful for everybody! Not all rules are created equal! Some are WAY more important than others!

The problem here is that I don’t know which rules are more important than others. Science may give us some info on this. However, your location, your town’s population density, your medical history, and your age, job, or whatever else may be equally important.

For example:

  • The mask rule may be the BEST rule for you if you live in an apartment building, work in customer-service, or do business in a crowded office.
  • Staying away from large close gatherings like church, bars, and restaurants may be the BEST rule for you if you work outside and mostly alone.
  • Keeping away from lots of contacts may be the BEST rule for you if you have a large family, where social distancing is impossible.

The fact of the matter is: I DON’T KNOW WHAT THE BEST RULE IS, and I bet you don’t either. But:

  • I also bet that you know the best rule for yourself. I bet others know the best rule for them, too. So let’s respect that.
  • I also bet that you know what is most valuable and “worth” risking your life for. I bet others know that, too. So let’s respect that.

Just be aware. Keep in mind your area’s hospital capacity. Keep in mind your neighbor’s worries. Keep in mind your obligations. Keep in mind the legitimate authority of the government. Keep it all in mind, and then make your decisions.

On the Breaking of Rules

The parallel of cystic fibrosis and COVID-19 get even weirder, too. The non-fixed nature of “rules” was the premise of a recent 2019 movie about people with cystic fibrosis.

In this movie, a young girl and very-health conscious girl with cystic fibrosis very dutifully follows ALL the rules to keep herself healthy. She is VERY good at keeping her social distancing guidelines — that is: six feet apart.

That is, she is very good at doing this until she realizes why it is sometimes GOOD to break those social distancing guidelines. Hence the title of the movie: “Five Feet Apart.”

I didn’t watch the movie. But from the trailer, I can tell from the trailer that the moral lesson is that broody bad-boys with piercing eyes are DEFINITELY worth the risk of infection. For example:

Haha. Just kidding! Just kidding! This is not a political post, and that’s a joke! But don’t pretend it’s not funny, because COME ON PEOPLE! Can’t we all LAUGH a little bit??? Hasn’t 2020 been hard enough? Can’t we all just LAUGH?

Treating Each Other Kindly in Strange Times

As I said in my first post about the “legitimate” rules that we might not like, there is ALWAYS a trade-off. There is no “correct” answer. There is no “right” way to do things. All the government does with its rules is decide, as far as they can, WHO suffers, WHAT they suffer from, WHEN they suffer, WHERE they suffer, and HOW they die. It’s rough business.

But we do not have to be rough to each other. The First Amendment’s guarantee of “Freedom of Speech” does not mean that I can expect to receive verbal abuse from those around me — even if what they say is true. (After all, the insults that sting the most are usually the ones that are true.)

So is social distancing GOOD? Is close contact with strangers a RISK? Of course. But if someone needs a hug, give them one. Social distancing isn’t THAT good. Some risks are worth taking.

Does wearing a mask make you look RIDICULOUS? Is it UNCOMFORTABLE and AWKWARD? Of course. But we can choose to view our humility in this regard as a virtue, as an act of service to another. We can take our discomfort and take pride in our small sacrifices for the benefit of others, even though we may never see the results ourselves. A mask isn’t THAT ridiculous. Some discomforts are just virtues in disguise.

As for me, I always wear a mask when I go into a building. Among the small group of core people I work with, I keep social distance, but don’t wear a mask. When I’m outside in the open air with nobody around, I don’t wear a mask. When I pass people on a trail on a run, I stay as far away out of politeness. If I’m around people (even outside), I gauge from their age, reaction, and from their own mask wearing whether it would be polite to put mine on.

None of this is a deprivation of my freedom. No one can put me in bondage when I voluntarily hold myself out to serve.

There are also rules of politeness that I’ve learned with cystic fibrosis that I can transfer to all of life. I have siblings with cystic fibrosis, and we have different convictions on “infection control” even among ourselves. Among those near you, the one who worries most receives the most deference. But when we are away from each other, we don’t lecture one another on what we are or are not doing. That might be a good model for everyone in these times.

A Final Note of Encouragement Regarding Your Inevitable Death

This post may not have cheered you up, as you now come to the realization that people will continue to be stupid, putting MILLIONS at risk. Therefore, here is my final attempt to encourage you: Don’t worry. You’re going to die no matter what.

Living with cystic fibrosis and type 1 diabetes over decades has had a strange effect on me. Instead of giving me anxiety of everything that can go wrong (and trust me, LOTS can go wrong), I’ve experienced the opposite effect: I’ve almost died so many times, I hardly even care anymore. For example:

  • I once remember having low blood sugar while driving once. Actually, scratch that. I don’t remember it at all. All I remember is waking up at 3 AM, parked crooked in front of my townhouse thinking, “Wait a minute, how did I get here?” The only thing I remember is giving hand-fulls of uncounted change to a toll-booth operator whose words stuck in my mind as he said, “It’s okay man, just drive. You can go. Go! You’re good! Go!” I don’t know how I got home, but somehow, I did.
  • I once remember running cross country in high school and being on a 10 mile run. I went five miles out and had a minor asthma attack in the middle of nowhere, and I remember thinking to myself: Crap. Now what? It was a long walk back, but I survived.
  • I remember once eating a very carb-heavy meal before getting on a plane, and just as they closed the door, I went to my insulin pump to deliver insulin, only to discover that the battery was DEAD — not “low,” but DEAD. I had no way to fix it and a very-likely-to-be-very-painful 4 hour plane ride ahead. I signaled a flight attendant about the problem, who kindly asked the crew that “If anyone has a triple-A battery, could you please put on your call light? We have a slight need in the cabin. Thank you!” Just at that point, as we were taxiing, the electrical system in the plane flickered, and a very loud “VVVVVVVVVVVRRRRRRrrrrrrrrooooooooooooommmmm…..” caused all the AC vents to stop, caused all the cabin lights to flash and then go dead, and caused the Captain to get on the intercom and inaudibly say “Well folks, it seems [inaudible] electrical [inaudible] but we’ll be [inaudible] in just a few minutes.” And as soon as the Captain finished, somebody from the back yelled really loudly, “WE REALLY NEED THAT TRIPLE A BATTERY GUYS!!!” The plane exploded in laughter. I was mortified. But I got my battery, and eventually I laughed about it, too.
  • Another fun almost-dying story was actually quite recent, when I went on a vacation to see Yellowstone in the dead of winter. Unfortunately for me, I had a little bit of a cold before I went, and I was feeling not so great. I also discovered just how cold it could get in Yellowstone, and I never realized how high up the elevation is in north-western Wyoming. Our park-guide began to tell us about the magnificent wolves who were reintroduced into the park and who were now thriving. He told us how they could travel for dozens of miles, take down huge prey like buffalo and elk, and how they could smell drops of blood for miles away. And just about then is when the cold, the elevation, my cystic fibrosis, and Murphy’s law all converged to make me start coughing up CUPS of blood, spitting them in the snow.
    • “Oh, wow, guys! Come take a look through this telescope! We can see a wolf across the ridge! That’s probably where the den is! Caleb, come see!”
    • “Uh… No, man. I’m good. I’m going to stay over here in the car, breathe into this towel for a few minutes, and take in the beauty of not-dying.”

To make a long story short, I sort of ruined the family’s vacation and was airlifted by fixed-wing aircraft because of a blizzard to Billings Montana, where I made a progressive recovery as I came closer and closer to sea level and eastern warmth and humidity. I’m happy to report I survived.

These experiences have taught me a few things.

  • First, God really IS in control (because I sure am not), and yet, here I am, and I’m fine. It’ll be okay.
  • Second, yes, things are hard and not very pleasant at all, and yet, here I am, and I’m fine.
  • Third, my needs and requirements are often the source of self-depreciating ridicule, but it’s fine, and I’m laughing, too.
  • Finally, the danger is real, and I do inconvenience others, but if your friends and family love you, you will get through it.

And if I die in the future in one of these stories, then I guess I die. But so what? I was never in control to start with, so why get so upset? Yes, we will follow (and break) some rules, but we’ll be okay. We’re all in this together, and we care for one another.

Conclusion

I don’t say all these near-death experiences to scare anyone. I don’t share things about breaking rules to discount any danger. Instead, I say them to say, yes there is danger, but LIGHTEN UP.

If you have the right attitude, anything that doesn’t kill you can become a REALLY funny story. Instead, we can rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame.

So, to my readers: Wear a mask, or at least be ready to wear a mask. Learn how to be kind to people who have different opinions about what they value. Be kind. Don’t be harsh. Be ready to serve. Don’t be judgmental. Celebrate your freedom, especially your freedom to love and serve one another.

And if “so-and-so” doesn’t ever wear a mask, gets COVID, and passes it on to you, there are two ways you can take it, assuming you don’t die (which, according to the numbers of COVID, is a fairly good assumption).

  • The first way is to be bitter and judgmental towards him for the trouble he ACTUALLY DID cause you.
  • The second way is to find it hilarious and joke about the story that ACTUALLY WILL be funny in a few years.

I heartily recommend the second way. If “so-and-so” really is a friend, he will feel bad all on his own. Even if he doesn’t, trust me when I speak from experience: As a rule, it is FAR better to laugh than to be judgmental and bitter.

Though not all rules are created equal, that one is more important than most.

Next Up:

The next post will answer a question that I have seen asked. The question is “Would Jesus wear a mask?”

So far in discussions on the topic, I’ve seen the rule “Treat others how you would like to be treated” used to confidently affirm “Wear a mask!” and “Don’t trample my freedom!” depending on your preexisting opinions.

I’m going to give a different answer that is not at all based on that rule. Instead, I’m going to explain how the command “Greet all the brothers with a holy kiss” is more relevant to today than you ever knew. Get ready: There will be ancient history involved.

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