Originally posted on cystic fibrosis news today.
One of Disney’s latest creations is “Disenchanted,” the sequel to the 2007 musical film “Enchanted.”
Without revealing any spoilers, one of the characters makes a wish to return their living conditions to a place of familiarity and comfort. One song, “Fairytale Life (The Wish),” reminded me of the mask mandate that made my wish for familiarity and comfort a reality.
“Once upon a time/ … Rules were clear and colors didn’t fade”
It’s getting harder to wear a mask. I wrote about this in a previous column titled “’Schadenfreude’: Experiencing Pain and Solidarity.” Unfortunately, inconsistent mask mandates in the U.S. have made my self-care more difficult. The guidance tends to be loosely interpreted and widely ignored.
In April 2020, federal health officials first recommended mask wearing, urging everyone over age 2 to wear masks while in public, traveling, or in the same household as someone who may have been exposed to the COVID-19 virus. Over the following months, multiple state and local governments established mask mandates. My heart (and lungs) breathed a sigh of relief.
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As a cystic fibrosis (CF) patient and lung transplant recipient, I’m required to wear a mask, regardless of any mandates, due to my increased risk of infection. But state and local mandates made my life easier, as many people got into the habit of wearing a mask around others.
“But was my ever-after just temporary?/ How I miss that fairy-tale life”
Now, I must manually create an environment of caution by enforcing my own COVID-19 protocols, and I must do this even among those who find my reaction burdensome and dramatic.
When masks were required, I was able to protect my lungs without people giving me a second look. But now that most mandates have expired and guidelines have relaxed, I’ve returned to my anxious, pre-COVID-19 self. For me, and patients like me, the pandemic will never be over.
I wish masks were still mandated.
“I thought I’d found a place/ Where I could make things better/ But all I did was change where I would fail”
The guilt related to my self-care, or the occasional lack thereof, is growing rapidly. Many guests made their way into my home over the holidays. Kids, friends, and family all stayed with my husband and me for at least two days.
While their company excited me, I was hyperaware of their sneezes and coughs. This wasn’t their fault. Everyone who knows about my CF and transplant journey is very respectful of my conditions. Even those who once opposed masks offer to wear one in my presence, especially if they’re recovering from a sick day.
Still, my old discomfort has resurfaced, leaving me to rediscover the bravery I once had. From both a germ perspective and a self-esteem perspective, how did I ever feel confident when I was the only one in a mask?
“Oh, what do I do if I don’t belong/ Where life can never be a fairy tale?”
The next level of discomfort involves me wearing a mask around people who don’t know that I have cystic fibrosis. I always greet guests at the front door and, naturally, am wearing a mask. They begin to greet me, then pause uncomfortably.
“Oh no, I don’t have a mask on me. Did you want me to wear one? I might have one in my car.”
“No need!” I’ll say reactively and cheerfully. “As long as I’m wearing one, I’m good to go!” I unconsciously step backward, distancing myself a good 3–4 feet from their mouth. Even purposely keeping my distance, the distance between us is not enough. The act of knowingly breaking the 6-feet-apart rule is stressful and taxing.
Being close to deaf on my left side due to years of IV antibiotic use throws another wrench in my social distancing plan. I usually can’t hear my guests unless I’m facing them and within earshot. Standing 6 feet away makes communicating seem impossible.
But I don’t want to give an awkward first impression. I don’t want to spend the first 10 seconds of my relationship with potential new friends explaining the details of my chronic illness. And I don’t want to do it before they’ve even met me.
Thirty minutes into any visit, most of my due diligence goes out the window. I don’t mean to disregard my own preventive measures. I try to keep an eye on the direction in which they’ve coughed or the things they’ve touched. I remain at least one couch away from them. I don’t give kisses, but I do hug. I do lower my mask to eat, and eventually, I settle with the concept that I already inhaled germs.
To summarize:
“And so I make this wish/ Where life is so confusing/ And pain can cut you sharper than a knife/ I wish that we all would live someplace where …”
… masks are mandated.