Still Hunkering Down: Cystic Fibrosis in Quarantine

I was born with cystic fibrosis, a chronic illness that mostly affects the lungs and digestive track. This puts me at high risk for developing life-threatening complications if I develop COVID-19. As such, I'm left to hunker down at home while I watch the people closest to me step up and protect my health with everything they have. They are my heroes who are working daily to keep me afloat. My disease is a burden, but thanks to them, it's not a burden I carry alone.

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My Mom wears crimson sweatpants and a pink tie-dye T-shirt while she makes a grocery list that she hopes can sustain my cystic fibrosis hearty appetite for two weeks. Dad stops behind the couch to check in on the news as he heads toward his home office. He has a conference call at 8 a.m. Words from Birmingham’s favorite weatherman, of the sort typically attributed only to tornadoes, seem to fall fearfully out of the talking head’s mouths: “Shelter in place.” I visualize the novel virus as a gray funnel ripping up people like a Hollywood vision of the rapture. 

I’m not religious, but maybe this is it is a thought I must shake out of my mind — sometimes physically, like a dog — before the panic sets in.

“Is there anything else you want? More beer? What do you want for dinner? I’m going to see if they have any chicken?” 

Since this started, my mom has been on a constant search for chicken. The store has been sold out of meat in our small Alabama town. I can see the garage freezers storing hoards of meat for the men who can’t imagine life without something that bleeds on his plate.

Dad asks for lasagna for dinner. Mom writes and I know her recipe enough to know what she’s hoping she can get: Italian sausage, cans of tomatoes, ricotta cheese.

I shake my head. I just ate breakfast, so I can’t fathom wondering what I might want for lunch in a week, but I remember the turkey Reubens Mom’s been making lately and ask if we have enough to make more of those this week. She writes Swiss cheese on the list. Even though she’s trying to hide it, I can see the anxiety coming to a rolling boil in her brain. It’s in her eyes. Her pupils are retracting little by little the closer her list gets to finished. She rubs her hands on her knees like she’s preemptively scrubbing off germs.

Growing up, I’ve been used to the wear of multiple weeks in isolation from colds, during flu seasons, the guilt of being taken care of, my loss of autonomy almost like a child’s. When I develop lung infections, I sometimes have to spend up to two weeks in the hospital on no-contact precautions. Any professional who enters the room wears one of those yellow gowns over their scrubs, gloves, and mask. It’s for my protection, not theirs. Which is different from the shots of the action I see on TV today. Nurses in double-masks look like my lifelong worst nightmare. Growing up, I was raised to be horrified of germs. While I was lucky then, a cold lands me on IV antibiotics more often than not these days. While things begin to open back up across the states, I’m still afraid to leave the house, leaving my mom to pull herself out of the comfort of this barrack. I feel like am the coward here, stomach bubbling with a shame no one wants me to carry.

She picks things up with a Wet One or Clorox Wipe, or both, while in the store. Signs the credit card kiosk with the pad of her finger instead of risking touching the stylus everyone touches. Wipes the bag handles and anywhere they touched the cart before putting them in the car. Wipes the groceries the bagger touched, which is all the groceries, when she unpacks them at home.

My boyfriend of three years, L, who had met my parents only a few times, now stays with me at their house. Mom does not trust him to go to the store. He hasn't finished his course — Basic Training in Caring for the Sick Girl — just yet. He understands. Dad goes with Mom, but doesn’t touch anything. He’s moral support who stands in line with her in case she feels too crowded and must walk away. My health, and life, has never been more at risk. Which is strange when, after a novel breakthrough drug for cystic fibrosis got approved by the U.S. Food and Drug Administration last year, I’ve never been healthier.

L does not know how to help, but holds my hand and soothingly shushes me while I have another panic attack today because there’s another press conference on TV. Because our president can’t make a decision. It’s become our running joke.

“What do we want for lunch?” Dad asks.

“I don’t know,” I say, then look at L, who shrugs. We aren’t a family yet, so he doesn’t speak up to make requests. He’s just happy to be welcome.

“Do what the president can’t,” I jest at no one in particular. “Make a decision for the health of the whole. We all need to eat. We all need to live.” It’s a dark joke, but gallows humor is how my family has coped for 25 years, and we can’t stop just because the world has.

Ultimately, I say, “I could eat a Reuben and fries,” and the decision is made.

L is the one who convinced me to deactivate my Facebook account because seeing the locals I’m friends with dismiss the lives of the vulnerable was not helping my anxiety, depression, bitterness, or anger. No Facebook helps. My mom sees L’s value to me, he sees hers. Neither of them see their own, so I try to remind them.

I ask my mom to make me a snack because I’m hungry, and I know having a task helps us all to get through the next half hour. I’m reading The Moviegoer by Walker Percy and relate more to Kate than I like. I want to shout her words at the world: 

You are all overlooking something, the most obvious thing of all.

But I do not think they’d understand. They don’t see why they have to stay home if they’re fine. So the spread continues. My isolation, our collective inability to continue life as normal, remains. I am not the hero of this story, I never am.

Often, because of my illness, people attribute the title of “hero” to me with refrains like I could never do what you do or you’re just so strong. Every time someone says this, I cringe. Never have I been more convinced of my dependence on other people, as I watch those closest to me navigate my health as a priority. The difference between me and the people who revere me, is that they don’t have to do it. It isn’t their life at risk.

I can see L’s nervousness. He wants, as all good companions do, my parents to like him. This is a long time for us to be on our best behavior, watching what we both say to each other. Will our usual riffing be seen as cute or disrespectful? Will our inside jokes seem too blue without context? We worry the worst for no reason other than our anxieties.

I worry this will never settle down. I worry about the collective disassociation that comes with re-integration. I’ve experienced time after time what it feels like to return to the world after weeks away, retreating to protect my weakened immune system. But that I know the world has never had to emerge from anything like this. How many marriages will survive? How many will fall more deeply in love? 

I look at L and hope we’re the latter. He looks at me, and I can see he worries the same. We hold hands, half-smile at each other, and hope against hope we’ll be okay. Dad changes the channel. When she gets back, Mom will make Reubens for everyone.

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