A place for stories about chronic illness, disability, mental health, and neurodivergence.

Hiding in Plain Sight: Life With and Without Masks

By

The writers’ convention had a strict policy: “No mask, no con.” Everyone wore masks and the space was well-ventilated. As one of their invited authors, I felt safe. I met all sorts of people in meatspace instead of online. It gave me hope for a more caring culture than I’ve otherwise been living in these past few years.

I have a variety of invisible disabilities. As I get older, I collect more ailments. I feel like I’m inadvertently playing a perverse version of Pokemon. Gotta get ’em all! My body doesn’t function the way it should, so I have a pile of medical appointments to attend to on a regular basis. This week, one of my teeth is dying, and I’ve been sucking up the pain while also adjusting my diet for an endoscopy and colonoscopy. Although I’ve had gut issues all my adult life, I’ve never had either of these procedures before. I don’t remember ever needing to go on a strict clear-fluid diet before. I’ve spent much of the last twelve hours on the toilet with my arsehole feeling like it’s been used as a heavy bag at a kickboxing studio.

I arrive at the clinic wearing a brand new dove-grey KN95 mask and am met at the desk by a battalion of unmasked receptionists. I can only take comfort in the fact that there is only one other person in the waiting area, although they aren’t wearing a mask, either. I’m handed a sheaf of consent forms to sign, but beg off to run to the bathroom one last time. After one last butt piss, I come back out to read the paperwork. One of the sheets I’m supposed to sign is a consent form saying I’ve had the procedure and its potential side effects explained to me. “Excuse me,” I say to the receptionists. “I can’t sign this because it’s not true. No one’s talked this through with me.”

I’m regarded with undisguised exasperation. “Just sign it,” a receptionist says. “Everything will be explained to you inside.”

“No,” I say. “I can’t say I’ve been told something when I haven’t been told. That would be lying.”

The receptionist rolls her eyes and looks back at a nurse emerging from the back. The nurse isn’t wearing a mask. No one is wearing a mask but me and my partner Kyle, who drove me there.

“What’s the problem?” asks the nurse.

“She won’t sign it because she says it hasn’t been explained to her,” says a receptionist.

“Just sign it,” says the nurse. “The doctor will go over it with you later.”

I shake my head no. “It’s a legal document. I won’t lie.”

Irritated, she gestures for me to follow. I go along with her, turning back to wave goodbye to Kyle. He sits by himself in his Barbie pink KN95 mask. While the receptionists discuss what they’ll have for lunch today, I’m taken to a large open room with curtains cordoning off individual beds. I don’t see a HEPA filter anywhere.

“Remove all your clothes from the waist down, put on the gown with the opening in the back, and get onto the bed. Put your clothes and personal items in the bin.” 

I nod. “Will the people working on me be wearing masks?”

She looks at me like I’ve lost my mind. “No.”

“Please,” I say. “I’m at high risk for airborne diseases.”

She ignores this and tells me to make a fist over and over again with my right hand. She needs to put in an IV. I open and close my fist. I worry that she will take out her annoyance on me by being rough with the needle. Fortunately, she doesn’t. The needle pierces the back of my hand. “Ah,” she says, sounding a bit surprised. “You have great veins.” I wonder if I should thank her for the compliment. She attaches a tube to my hand and pulls the curtains closed. 

It feels like my heart is pounding away at my eardrums. I feel faint. Even a common cold leaves me sick for months and sometimes lands me in the emergency room. I have been assiduously masking since the beginning of the pandemic and so far, to the best of my knowledge, have avoided catching COVID. I will not be able to wear my mask for the endoscopy.

I strip off, put on the gown, and lie on the bed. My muscles are tense and I am barely breathing. I’ve been unconsciously holding my breath and then taking only the smallest possible sips of air. This won’t do. Slow, deep breathing will help. I focus on my exercises. I inhale for a four-count, hold for four, exhale for four, and repeat. My muscles are still tense. I try to relax them. They won’t relax. I think of my happiest memories. I remember my chicken who used to go sledding with me. It doesn’t work. I think of my cat Dumpling, and how she hiked with me through the dark forests of the northern Appalachians. It doesn’t work. I remember riding my pony Dolly as she galloped up from the barn to the house. Our movements were so in sync it felt like we were one and the same creature. It doesn’t work. My muscles are as tense as ever and I feel tears pooling in both eyes.

The nurse comes back. “Are you ok?” she asks. 

I’m not sure how to answer this, but I give her a thumbs-up. A tear rolls down my cheek. I wipe it away.

“Don’t worry,” she says, her expression softening slightly. “No one here has COVID.” She can’t possibly know this. She certainly didn’t test Kyle or me when we walked in. As far as anyone knows, Kyle and I could have it and be asymptomatic. My various health conditions give me COVID-like symptoms, so I tested myself just in case. I don’t want to accidentally infect anyone.

The doctor arrives. She is not wearing a mask. She explains the procedure and the risks. I could potentially get a perforated bowel. I think of my Dad who almost died when his hernia surgery went wrong and his bowel was cut. I sign the paper and am wheeled into a room. My anesthesiologist is unmasked, too. The nurse clips a monitor onto my right forefinger and straps a blood pressure cuff around my left arm. The cuff grips me. I hold my arm very still so the blood pressure reading is correct. Someone tells me to remove my mask. I put it beside my shoulder and then I’m fitted with a bite guard. It looks like something from a BDSM kit bag. It holds my mouth wide open and has a big hole in the middle. I thought it would be a bit soft, but the plastic is even more rigid than my muscles. At least it’s not sharp like the x-ray plates at the dentist. An oxygen tube is fitted into my nose.

When the pressure releases on the cuff, I realize my arm is folded across me rather than lying flat. Through a sedative haze I remember that the best blood pressure reading comes from a straight arm, not a bent one. I straighten my arm, and the cuff grips me again. Then I’m told to lie on my side with my knees drawn up to my chest, and the next thing I know, I’m not in the room anymore. I’m lying on my back in the bed with no one but the nurse by my side and she is telling me to get up and get dressed. 

My new dove-grey mask is gone. 

I feel like I’ve been halfway resurrected. I emerge from a world devoid of dreams. I apparate from a block of missing time, like I’ve been abducted by aliens. My thoughts are the barest of ephemeral wisps. I’m handed a bunch of papers. My hands fold them and place them into my purse without me knowing what I’m doing. 

I manage to dress myself somehow. I fumble in my purse for my spare mask (I carry a spare in every coat and bag). I put on the white KN95 with its aluminum nosepiece. The nurse helps me walk. I am a freshly born foal. I’m unsteady, wobbly, and unsure of how legs work. I want a wheelchair, or to sit a bit longer, but I must keep walking.

The nurse lets go of me and I stagger. Kyle sees me from where he’s sitting in the waiting room and rushes over to give me his arm. I clutch onto it and lean into him. It’s time to go home. 

I thought I’d be hungry after fasting for a full day, but I have no appetite. My stomach hurts like it has been packed full of sea urchins. I can’t stop moaning and groaning like a sad walrus, but amazingly, my arsehole doesn’t hurt anymore. They must have used magical lube. I grab a paper bag when I think I will puke, but the feeling passes. It’s just as well. There is nothing inside my belly but air.

The drive home doesn’t take as long as the ride there. When I remark on this, Kyle says that it’s because I kept falling asleep. I have no recollection of falling asleep or waking up. The aliens have stolen more of my time.

When I get home, I go directly to bed, lay on my side, and let loose the world’s largest fart. I’m surprised my body could hold so much. At least my guts no longer feel full of sea urchins. 

When I wake, I feel much better. I look at the papers. One of them is a prescription. I walk to the drugstore and hand it to the pharmacist. He looks at it with puzzlement. He is not wearing a mask. He has never worn a mask, not even during the early days of lockdowns and mask mandates. “You shouldn’t take this,” he says. It is a far inferior version of a medication I already take on a daily basis and cannot be taken in conjunction with the meds I’m already on. 

I told the people at the clinic what medications I was on. Obviously, they hadn’t listened. Few doctors do listen. Sometimes, when they do, they gaslight me. When I went to a clinic a couple of years ago with multiple serious symptoms including severe bruising on my legs, chronic fatigue, and acute pain while shitting, so bad it sometimes made me puke or faint, the doctor tried to soothe me by saying, “It’s hard when you have mental health issues.” He was blaming my physical symptoms on the state of my mental health, and not on the medicine he’d given me to alleviate my anxiety. These physical issues were direct side effects of the medication he put me on, but because of the one-symptom-per-visit rule, the doctor would not look at my health holistically. I was able to get off the bad medicine eventually and my contusions, brain fog, and severe abdominal pain went away. However, my danger senses are stuck on high alert. My medical history all but guarantees that if/when I get COVID, I will develop long COVID and become far more disabled than I already am. 

As I write this now, I am sitting in yet another clinic to get a regular prescription refilled. The doctor will not refill it over the phone. No one masks at this clinic, except for one receptionist who wears her mask beneath her chin, and several people are sneezing or have phlegmy coughs. I sit as far away from everyone as I can wearing a new dove-gray KN95 mask. I hope it is enough to protect me. 

I just got out of a dentist appointment. My dentist and his assistant wear proper masks. Neither have had COVID yet despite being right up close and personal with countless people’s faces. My tooth is dying and I need to see a specialist. I hope they will wear a mask. The receptionists at my dentist’s office don’t bother anymore.

Outbreaks of COVID are happening everywhere. Society acts as though there never has been a terrible airborne plague. Before COVID, clinics expected people with coughs and sneezes to wear masks. This is no longer the case. When I went to the emergency room a week ago to comfort a friend experiencing pulmonary embolism, almost no one wore masks. This included the attending nurse for my friend with the life-threatening blood clots in his lungs.

Hospitalizations and deaths due to COVID are creeping up, up, up, especially now that school is back in. Proper ventilation was never installed, and it’s rare to see any child wearing a mask. Some parents choose not to tell their children to mask because they’re afraid the kids will be ostracized for it. Society acts like children are immune to the effects of COVID. We think that kids are endlessly resilient, but this is in defiance to history. Hell, I went to an  elementary school with kids crippled by polio. For most of the existence of humanity, a huge percentage of children never made it to adulthood. The current dominant culture has never seen the ravaging effects of contagious disease. They think they are far removed from death and disability. 

In some bizarre combination of nihilism and toxic positivity, the world has embraced COVID. The society I live in is a death cult and even my husband has bought into it. Last week, he took me to get ice cream and did not wear a mask inside the parlor. I asked him if he hadn’t seen all the notices of local outbreaks I’d been sending him. He stopped wearing masks two years ago, despite my pleas. I’ve told him many times that I can’t feel safe in my own home when he regularly goes to parties, grocery stores, restaurants, and cinemas without masking. He shows no sympathy. Only anger. He tells me if I don’t like it that I should move out. He tells me maybe I ought to go live with my parents. 

My father has long COVID and it is killing him. 

I ask my husband why he would say such a cruel thing to me and he claims he is joking. 

I see only knee-jerk cruelty and a complete disregard for my well-being. I don’t understand how he thinks. He unironically sings the “Everything is Awesome” song from the Lego movie. He thinks global warming is no big deal, even though the country is on fire and I’ve had to wear a mask all summer when going outdoors. If I don’t mask outside, the air pollution kicks my asthma into high gear, and I have to spend my day lying in bed, recovering. Then the next couple of days are filled with post-asthma attack headaches caused by insufficient oxygen. So I wear my mask when I go outside. And when I’m home, I mostly stay in my room next to my HEPA filter. While the world pretends everything is fine, I’m back in lockdown. My room is the safest place I have. 

My husband has already had COVID once and thinks it’s no big deal. I tell him that if he keeps catching it, it will eventually disable and/or kill him. I tell him that several of my friends have had strokes or heart attacks because of COVID. These are people who are theoretically too young for this. Some of them were fit and athletic. 

This fills him with rage. He says he’s never offering to take me anywhere again. He tells me he is willing to speak with me only when I’m willing to be rational. Kyle and my roommate stare at him aghast. He storms into his room and shuts the door.

On the outside, I seem fine, but I’m screaming on the inside. I have to keep doing the most mundane things even as the world crumbles to ashes around me. If I couldn’t write, I don’t know how I wouldn’t lose my mind. I look for all the good moments I can find in a day and try to focus on those. These will be my talismans in the pyrocene.

If I could move out I would, but I can’t afford it. Kyle can’t afford it. We are both poor and rely on my husband’s well-paying job. We co-own our house. I rely on my husband’s medical insurance. Without insurance, I can’t afford any of the meds it takes to keep me functional/alive. Although I am doing well as a writer, it is nowhere near enough to live on. I’m stuck in a catch-22. 

After waiting for about an hour in a room full of sick people, I’m called into the doctor’s office. For the first time since I’ve been going to this clinic, my family doctor is not wearing a mask. I get my prescription refilled and ask him about when the new COVID vaccine will be available. 

He has no idea.

My last booster is worn off by now, and I don’t know where to get a new one. I walk to the pharmacy and get my prescription refilled, plus antibiotics for the ongoing toothache. No one is wearing masks in the clinic, as usual. I stop into a corner store and an unmasked man looks at me with a smirk. “Who’s hiding under that mask?” he asks.

I’m not hiding. I’m trying to survive. 

After several hours of medical/dental adventuring, I make it home. Just as I’m about to go into the house, my phone rings. It’s the dental extraction specialists. My tooth has been dying for quite some time and I live with chronic dental pain. Because of the nature of my teeth, I will need to be anesthetized. Again. The last time I had an extraction with just freezing, it was forty-five minutes of the dentist playing tug-of-war with my tooth. That night, I passed out several times and vomited. My roots are extra long and don’t want to let go of my jaw. I won’t be able to get my tooth pulled for another month. I’m to hold off on the antibiotics as long as I can. I’m used to mouth pain. I can do this. I’m a chronic pain warrior.

I wonder if the people working on my mouth will wear masks for people like me.

Contributor

  • Shantell Powell is a two-spirit author, artist, and swamp hag. She is the Yosef Wosk VMI Fellow for 2023, a SpecFic fellow at the 2023 Roots Wounds Words Winter Retreat, and a graduate of the Writers’ Studio at Simon Fraser University and the LET(s) Lead Academy at Yale University. Her writing appears in Augur, Solarpunk Magazine, and more. She is a recipient of the 2022 Waterloo Arts fund for her manuscript in progress.