A pal of mine is a teacher in a New York City public school who has a long-term, debilitating illness. She asked if she could tell everyone what it's like to be a teacher in the time of coronavirus, as well as someone with a pre-existing condition. She's tough as hell despite her diagnosis, and she's pissed at all that this time of pandemic and Trump has put her through.
We went back and forth on what to call her, and she decided. So this is by One of De Blasio's COVID Prisoners. Take it away:
Back in early March, I was standing in front of a classroom, looking at the electronic pens that write on the SmartBoard with a kind of horror that’s typically reserved for, like, gigantic spiders. Or seeing a Trump rally on television. I’d stand in front of my classes and dread touching the SmartBoards; I’d use hand sanitizer obsessively. I’d dread touching the computer. Every person who sneezed got several looks like they’d just kicked a puppy. My students begged me to let them go early because they wanted to avoid the crowds so they didn’t bring coronavirus home and kill their grandmas.
Coronavirus was a hot topic in my department. I was discussing it with my colleagues, most of whom are older Republican Baby Boomer men who act like stereotypical older Republican Baby Boomer men. We sat in a dusty, cluttered office together because there’s not enough space for all of us to have our own classrooms. We were all collectively shitting ourselves because we knew coronavirus would be coming. They’d all speculate when it would come to a school building. Everyone collectively knew it was coming to a New York City Department of Education petri dish near you.
I’d repeatedly ask these older male colleagues to keep their distance. They’d look at me and laugh; they’d tell me I’m young, I have nothing to worry about. It got to the point where I eventually stopped asking people to keep six feet away, and I just got up and moved. I had no desire to reveal to my coworkers my extremely complicated medical history. What they didn’t realize is that I probably have more health problems than all of them combined.
Every illness comes to school buildings. The conditions in my buildings are terrible. There are roaches in these buildings. I was once chased out of the bathroom by a roach; this is not uncommon as I’ve since learned they’re aggressive. There is black mold. There is dust, asbestos, and lead water. Lab equipment is broken. Bathrooms are broken. Ventilation is miserable on a good day. There’s no soap. I knew these buildings couldn’t exist as they were in a world with coronavirus. The flu spread through it like wildfire; it got to the point where you couldn’t pinpoint who you got the flu from.
I knew coronavirus would be the next visitor; in late February and early March, every day I would come home from work, practically strip at the front door, shower, and get into my bed because I was emotionally numb. Occasionally I would work out in my house, or go for a walk, but most of the time I came home and slept. While everyone in my building was scared of coronavirus, I had a reason to be more nervous than the usual person: I am an invisibly disabled woman who is high risk because I have at least ten chronic illnesses; one of those is asthma. I have what is now referred to as “preexisting conditions/co-morbidities” and I am now terrified I will lose my insurance. For most of March, I was convinced I wouldn’t see the end of 2020 if I stayed in a school building.
This is what it’s like to have a disability that makes you a high risk coronavirus patient, in a plague, with Ruth Bader Ginsburg dead and a troglodyte wannabe dictator as your supreme leader. It’s story time, though. Grab a drink. You might need it. Fuck, I do.
I want you to imagine this: you just got home from high school. You plop down your backpack, and tell your mom you want to use the old treadmill in the basement. You’ve always been pretty energetic; sleeping was never your friend. You always went on hikes, long walks, and bike rides. But you’ve always really liked running and wanted to give it a shot. You pop the key in and get going on the treadmill for about forty minutes. When you get off, your knees feel a little weird, but you figure it’s just some muscle soreness or weakness. The next day you can’t walk.
So here we are. I’m 15 years old and I can’t walk. I went to a doctor who told me he didn’t know what the problem was, so, for now, I should use leg braces so I can walk while they figure it out. I went for X-ray after X-ray and I am surprised I don’t fucking glow in the dark. They later determined after a few days that my kneecaps were “loose;” in other words, I was “double jointed.” They just didn’t know why, didn’t know why it was so painful, and didn’t know what caused it. Mind you, I couldn’t wear these leg braces with my uniform, so I needed to wear sweatpants and sneakers to school.
I began to read up on Democratic and Republican policies in high school before this happened because I was surrounded by Republicans. I decided that Republicans were just shitty for everyone, really. But it also got really, really personal in high school. Because the school nearest to me was laden with crime at the time, I needed to go to a private Catholic school as I didn’t get into any others (public schools here in NYC are bursting at the seams). I was not thrilled about this at all nor were my parents. But whatever; I did it. Most of the staffers in this building were Republican and weren’t shy about it: Abortions should be illegal. Kill prisoners. Gay people are bad. Socialism - no other context needed here. I heard rants about Democratic presidents daily. As you could imagine, I hated nearly every single one of those fucking staffers. I reveled in it when a lone voice of sanity challenged their beliefs as I would occasionally do. And this is fucked up before you stop and think: holy Cheez-its, Batman, they’re teaching kids this shit. And they’re not even supposed to be.
The dean in my school at the time can only be described as one of the most wicked people I’ve ever known, even before I needed to deal with her. I approached the dean and told her I needed to deviate from the uniform because of a still-unidentified illness; being “double jointed” doesn’t sound like a problem to most people, so I told her we were still figuring it out and that I needed leg braces. She argued with me. How could she possibly allow me to deviate from the uniform for an unidentified illness? What if I was lying and there was nothing really wrong with me? She told me I couldn’t deviate from the uniform because too many people had already and there was nothing wrong with them. Better yet, I asked her for an elevator key, and she told me she didn’t have any more and I should just “run for the elevator.” For a moment, I was temporarily rendered speechless; then, I told her that I’d give her another note and I was coming to school in these braces with or without her approval, and got up and left.
Mind you, this type of paranoia permeates the Republican base. Scientists have an agenda. The election is rigged. Climate change is created by the libs. People on disability are moochers. This was my first experience of discrimination and Republican-sponsored paranoia all while these very same people were supposedly preaching Christian values. I even needed to read a book by Dinesh D’Souza in this school. After every chapter, I’d send texts to a like-minded friend laden with curse words. I got rid of that book by throwing it in the garbage where it belongs. I still wish I had burned it.
My supposedly standoffish attitude led to constant harassment. I would be ambushed in the hallways by this dean who would constantly taunt me that I still didn’t have a diagnosis. She would ask me when I would be switching back and ask me for the diagnosis. She’d tell me I needed to be in the uniform or figure out what the diagnosis was a lot quicker. This came through in my classes: I had a teacher who consistently told me I “looked really comfortable in my sweatpants.” I told him privately I had on leg braces and to please lay off. He kept doing it. Now that I am a teacher and see how gossip spreads, I’m convinced that these are the people who didn’t believe I needed the leg braces because the dean must’ve fed them information.
Over time, these confrontations got more and more aggressive between me and the teachers who confronted me. I was consistently made to feel like shit. Never mind the fact that I was consistently put in awkward situations in the name of “God.” I once sat through a class where the teacher was professing how wrong it is to use fetal cells, even if it cures illnesses. I sat there with my leg braces on listening to this dribble; how “God” made me that way, so I should be grateful for my journey or some shit.
All the while, I was bouncing from doctor to doctor, paying copays, only to be told ,“I don’t know what’s wrong with you.” I could walk after a year in leg braces because I went to physical therapy, but we needed to get to the bottom of why I was loose jointed. I estimate, to date, we have spent approximately $20,000 to 30,000 in copays alone. But even at physical therapy, older people would see me and ask me what put me in physical therapy. I said my kneecaps were loose and my muscles were weak and it was never going to go away. The responses ranged from wildly inappropriate to plainly odd to sensitive and caring. People asked me if I could work. People simply told me, “That sucks” and laughed. People sometimes lectured me on how their wife’s second cousin’s best friend had some rare health problem but taking a bath in horse shit and mayonnaise fixed it. It was then I realized: people don’t know how to deal with chronically sick people. This also somewhat extends to the medical profession: once they don’t know what’s wrong with you, some of them don’t know what to do with you. One doctor plainly told me, “I give you until you’re 30 to have a decent life.” She didn’t even know the diagnosis. She didn’t even try to give me one.
So this is at least two years of this uncertainty and jumping from doctor to doctor. Of course, as I am jumping from doctor to doctor, I am beholden to insurance. One of them made me nearly pass out on the table because he messed with my joints so much, and I didn’t have a choice but to go back to him. And that is not to say all doctors are bad – the way insurance is done in America is bad. Yes, I am obviously pitching Medicare for All here.
I continued going to this doctor who’s just doing x-rays of every joint in my body, trying to figure out what the fuck is happening and still obviously getting nowhere. I still didn’t know what was wrong with me. I had (and still have) leg pain. I had these pains a lot as a child, and they were consistently called “growing pains.” I was no longer growing and these pains still persisted, and now they were going all over my body. I was sitting in a car and realized my entire body felt “loose.”
I got to the point where I couldn’t take it anymore and began googling. I found a disorder called Ehlers-Danlos Syndrome. I became convinced this is what I had. Still, I had no official diagnosis.
I was finally referred to a rheumatologist. I knew I needed to go for it; I needed to just go into the appointment and say all the right things. At this point, I’d seen one primary care doctor, two orthopedic doctors multiple times, two physical therapists, and now this rheumatologist. She told me I had “Joint Hypermobility Syndrome,” and there it was. I told her Joint Hypermobility Syndrome and Ehlers-Danlos Syndrome were the same thing. To my surprise, she didn’t argue and just seemed genuinely mystified as to how I knew that, but I would be sent to yet another doctor, a geneticist, because it was out of her area of expertise.
But I didn’t forget what I researched earlier in high school. I researched that Republicans opposed pre-existing conditions coverage and I’d likely be charged more money when I had my own insurance. There was no pre-existing conditions coverage at the time, and I was scared to get officially diagnosed. Someone needed to talk me into seeing a geneticist because I knew what it meant. I paid attention to politics, after all. I kept trying to cancel. I kept trying to bail on this appointment. I waited a year to see the geneticist and paid 400 dollars out of pocket. On the way to the appointment, I was reading about the politics regarding pre-existing conditions and filled up with a sense of dread, as well as anxiety from knowing this information and knowing I was about to get formally diagnosed with a life-changing medical disorder.
Going to a geneticist is a strange experience; the appointment itself lasted hours. It’s less like going to a doctor and more like where science and doctors meet. She measured every part of my body. She asked me questions about every part of my body. She asked me questions about my career choices that she needed to personally approve of. She asked me about my hobbies. But all of this wasn’t small talk: it was a large, all-encompassing medical evaluation. She finally said that I had Ehlers-Danlos. This event is relieving and mournful at the same time: you’re happy the endless X-rays and back and forth between doctors is over, but you’re also mourning the possibilities you thought you might’ve had as soon as an hour ago.
But still, my biggest concern was always pre-existing condition coverage. When Obamacare passed, I breathed a heavy sigh of relief. I have since endured more goddamn X-rays, multiple MRIs, and have at least ten diagnosable problems. Yes, actually ten. Two of those undeniably place me in the high-risk coronavirus category. If you’re wondering why I have 10 illnesses and someone else you know has, like, 3, it’s because Ehlers-Danlos Syndrome is a connective tissue disorder. It can affect anything because connective tissue is all over your body. It supports your organs, your vascular system, your skin. It is also a very painful disorder because all of your joints are loose; it’s also exhausting because your muscles need to hold in your joints. I needed to get every single major organ and organ system checked following this diagnosis. Think of me as a real life member of the X-Men. I’m hyper-flexible, and it causes problems beyond that. I have seen nearly every -ologist there is.
Ehlers-Danlos has a couple of comorbidities that are actually making the news right now, and it would be wise for you to know their names: Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS). Both of these disorders are now being diagnosed in coronavirus “long haulers.” Mast cells are involved in the inflammatory response that ensues when someone is severely sick from COVID; they cause the cytokine storm. But instead of these cells “calming down” after the infection is cleared, it is possible they still overreact to various stimuli. Not only that, but Mast Cell Activation Syndrome is currently being considered for being one of the causes of severe COVID-19 illness as well as post-COVID illness. And I’m here to tell you right now: POTS sucks. MCAS is totally horrifying.
POTS and Dysautonomia in general is sort of like being hungover because of the brain fog. Except, it’s, like, constantly. You also react heavily to any kind of external change your body experiences - temperature, blood pressure, gravity. You can’t tolerate hot/cold extremes. You can’t exercise because your body can’t adjust to the changes in severe cases. You can’t stand up too fast, or at all, or you’ll pass out. You get tired from doing mundane tasks, like showering. You sweat too much or not at all. You have heart palpitations often. Your sleep is absolutely shit and not restful at all on a good day. You get random fainting spells. You’re constantly dehydrated, and you might need regular saline infusion treatments.
MCAS and mast cell disorders are a little more dangerous. Mast Cell Activation Syndrome is like your immune system needing a Xanax. You are allergic to everything and nothing, simultaneously, and any of these things that set off your mast cells can lead to random anaphylaxis, but it isn’t consistent. For example: you’re “allergic” to cats on Tuesday but you’re not anymore after Thursday. On Thursday, instead, you’re “allergic” to vinyl couches or a specific type of laundry detergent. Hot showers can set it off. Exercise. Cold air. Environmental pollutants. Stress. It is ever changing, and you can’t fully predict it. They also can activate in different places, causing different symptoms: if they activate in your gut, they cause diarrhea. Brain? Anxiety/fatigue/depression. Skin? Rashes, It can send you into anaphylaxis, and none of these “allergies” typically show up in routine allergy blood tests.
You are one viral infection away from being just like me, and potentially getting these.
Quarantine for chronically ill people is rough. Like, really rough. The reason is, yeah, it sucks. I've seen the inside of a supermarket three times since March. Like, I miss the goddamn supermarket. Yeah, it sucks I live with other people who are afraid of bringing it home. But there’s a social aspect to this now: people still don’t know how to deal with chronic illness. Some people I know tell me I’m “living in fear” and I need to just take risks. This is happening to most people I know that have chronic illness right now. Their friends and family members are telling them they’re just living in fear. Their parents or siblings actively fucking protest wearing masks. People didn’t understand how difficult it was to be chronically sick in America when someone like Obama was president. They understand it even less under Mango Mussolini.
But there’s another part of this too: we can’t go to doctors. I needed to coordinate my appointments with coronavirus infection rates. I’m lucky. I can wait. Other people can’t wait. Other people need kidney dialysis. Other people need infusion treatments. Every time they step out the door and go there, they’re taking a risk if there’s some idiot without a mask. In my case, the most dangerous thing has been not going to the gym and not seeing my physical therapist. Because my ligaments are weaker than most, my muscles do all the work. Except, now, I haven’t been able to go to the gym and I am losing muscle, and my other issues are experiencing deconditioning. This is extremely painful and making everything else I have worse. And the decline isn’t just me; it’s everyone with any kind of illness that needs routine attention you cannot do at home. And you’d never even know all this if you saw me in person. It’s all invisible.
Be very fucking afraid of coronavirus. I actually had a relative on a ventilator during the beginning of the pandemic. He was on a ventilator for a week and was one of the first people in the United States to receive Remdesivir. His hospital bill was well over a quarter of a million dollars, and he is now dealing with chronic health issues. But beyond that, be very fucking afraid of Amy Coney Barrett and the Republican Party’s desire to get rid of the Affordable Care Act. I’ve paid enough for my healthcare in this capitalist hellscape because I am a cash cow for the medical establishment.
Wear a mask. Wear a mask, so you don’t kill me, your child’s teacher, or your sick friends, or your older relatives. Tell your representatives to fight, so Amy Coney Barrett cannot kill anyone either. Just fight them every way you can. Vote Democrat for the Senate. Do fucking anything to resist them and this party, and I am literally pleading with you. Teachers in poorly ventilated buildings are pleading with you because Trump wouldn’t give blue states federal money and says, “Open the schools.” Your nurses who worked without PPE are pleading with you so they don’t need to die or infect their relatives. Your mailman is pleading with you so he can keep his job and get a pension. Your chronically sick and disabled friends, who are very much a part of society, are pleading with you so they literally are not killed.
I am one person who has been affected by multiple aspects of this crisis long before it was a fucking crisis and boiled to this point. There are thousands like me, and I am in no way unique. I have been fighting this party since I was a kid and I’m not about to stop, but you need to help me.
Fight for me.
Fight for you.
Fight for your disabled friends.
Fight for the coronavirus victims.
Because if you become like me, you’re fucked along with me.
