I was already in a hospital the first time I realized I needed a wheelchair. A sprawling full city-block of a hospital in midtown Manhattan with a lobby that looks strikingly similar to the cavernous Ministry of Magic atrium. My neurosurgeon had sent me in for an emergency MRI three months after I’d been diagnosed with COVID-19. Death or a two-week flu were the only options for people who contracted COVID, according to the Centers for Disease Control, and I wasn’t dead so surely lingering coronavirus wasn’t the thing that was causing my body to go so berserk. Racing heart, palpitations, stroke-high blood pressure, chest pain, weak legs, fatigue that felt like my body was made of lead, nausea, loss of appetite, extreme weight loss, shortness of breath, brain fog that caused me to forget how to form sentences, bladder dysfunction, and creeping numbness and tingling in my feet and legs.
It was those last things that caused my neurosurgeon’s alarm. I have what’s called “remarkable” cervical stenosis. When my neurosurgeon first showed me my CT scan and diagnosed me last fall, I thought he meant it in a good way. Exceptional. Impressive. Miraculous. He did not. Remarkable, he explained, in the sense that I have the spine of a person who is 300 years old. And with such a spine, when you can’t remember the word “carrot” or how to turn on the oven, and your legs are tingling all the way up to your knees, there’s a chance your vertebrae are crushing your spinal cord en route to paralysis. It could happen over time, or it could happen right now.
As I stood swaying in the hospital lobby while the nurses and security guards debated what to do with me, I realized I should have taken my neurosurgeon up on his offer to send an ambulance to my house to get me. But I’d already racked up one ambulance ride when my feet initially lost their feeling. An Uber was faster and, frankly, less expensive.
The problem was I didn’t have a positive COVID test or a negative COVID test, because when I’d gotten sick over 90 days before, no testing was available in New York City, unless you were admitted to the hospital, and the telemedicine doctor told me not to go to the hospital unless I couldn’t finish my sentences or my lips were turning blue. But also I still had COVID symptoms. But also I wasn’t there to be treated for COVID symptoms. I was there because my neurosurgeon told me to meet him there. Did I belong in the COVID triage tent? Did I belong in the regular emergency room? Was I a danger to everyone in the lobby? Were they a danger to me? Who did I think I was, anyway, walking in off the street demanding an MRI in the middle of a global pandemic?
“I’m sorry, I hate to be dramatic,” I said, as I waited to see if they were going to let me into the hospital to find out if my spine was squashing the feeling out of my legs permanently, “but is there anywhere I could possibly maybe please sit down?”
There was not. The visitor chairs had been removed for social distancing. I glanced over at the security guard’s stool. “Don’t,” he said.
I decided my only hope was utilizing my gift for defusing tense situations with humor, so I decided to do a Ministry of Magic gag. “Broom Regulatory Control, level six” is what I meant to say, but I couldn’t remember the word “broom.” I started my joke; “broom” fell out of my head; I made the motion of sweeping, then stepping over the handle of a broom, then lifting up off the ground and whooshing around. I heard myself make a vrooooooom sound, like when an airplane spoon is heading toward a child’s mouth.
“Ma’am,” the security guard said, even more apprehensive than he had been, “Have you been drinking?”
I called my neurosurgeon and he sent an intern down to get me.
My COVID onset was pretty normal, in terms of what’s considered normal for a novel coronavirus that shuts down the entire world. I started displaying symptoms a week after New York City went into lockdown in March. Slight chills and a mild sore throat that progressed to chest congestion and tightness, a cough, and shortness of breath. I was really tired and I didn’t have much of an appetite. I got winded just walking down the hallway to the bathroom. Hot showers left me hacky-coughing for hours. It was terrifying — hospitals were overflowing; the only sound outside my bedroom window was the constant scream of ambulance sirens; the death toll skyrocketed every day; the Empire State Building was programmed to flash red like a beating heart as a showcase of solidarity with healthcare workers, but it looked like some kind of apocalyptic lighthouse — but after two weeks, my body started feeling better. Slowly, the band around my chest seemed to loosen, my cough eased up, my breath came back and I could walk down the stairs again.
I thought, “I survived! It really was, for me, just a bad flu!”
But I never got all the way better. At some point, I started to feel like I was relapsing — and then: new symptoms. The heart stuff and lung stuff and fatigue stuff that had me woozy-wobbling that night in the hospital waiting for my MRI, and a whole new kind of panic attack where the adrenaline that flooded my body was so extreme it caused tremors in my legs and arms that lasted for hours.
My startle reflex started operating in overdrive. If a loud noise woke me up in the middle of the night, I’d immediately burst into a panic attack. Nothing I did could get them under control. Not meditation, not medication, and exercise was out of the question — the only way I could get down the stairs at that point was to basically fling myself forward from the top and hope for the best.
The weakness seemed to settle into my bones.
I lay in bed, day after day, week after week, too tired to sit up for more than a few minutes. Stacy made my meals and brought them to me. Each time, I ate a few bites and had to lie back down to gather up enough energy to sit up and eat a few more. I tried to work, but couldn’t make it through a full day, and then couldn’t make it through a full morning. I asked for an extended leave of absence. I moved all of my toiletries from the bathroom to my nightstand. I could hardly manage a two-minute shower.
The telemedicine doctors all told me I’d be fine; of course the virus would knock me out for a couple of weeks, but I’d bounce back in no time. I explained it had actually been quite a lot longer than “no time” and they smiled and thanked me for calling. My primary care physician said it was anxiety. My psychiatrist said it was depression. New York City’s newly opened Longterm COVID Care Center told me I didn’t have antibodies so I hadn’t had COVID. And anyway, my bloodwork was excellent.
“Is it possible,” I asked the doctor, “that this antibody test might not be a foolproof way to determine who actually had COVID? And that you might not have all the answers for this brand new global pandemic-causing virus we find out something new about every day?”
“No,” she said. “Not possible.”
I needed a wheelchair to leave the Longterm COVID Care Center, but I was scared to ask for one. The doctor seemed to think I was overreacting about having a simple flu. I paused and leaned against walls to steady my legs and catch my breath instead. It took me 20 minutes to finally make it out of the building, and as I waited for my Uber, I sat down on the sticky summer sidewalk right in the middle of Union Square.
My neurosurgeon is renowned. In the good way; not in the way that “remarkable” means “yikes” in spinal vernacular. When his team arrived in the emergency room to handle my emergency MRI, everyone stopped treating me like a woman who’d stumbled in and mimed flying a magical broom around in the lobby and started treating me like a quadruple sapphire iridium medallion frequent flyer. Harried nurses who’d been grumbling about demanding doctors behind their backs for an hour were happy to volunteer when my neurosurgeon’s intern announced that he needed someone to help him check my anal tone. Doctors suddenly had time to come by and offer me a kind word. Nurses kept bringing me juice.
It was the most attention I’d had from medical professionals in months, despite having spoken to dozens of doctors about my COVID symptoms by then. I asked every nurse and doctor who came to look in on me if they knew anything about people suffering from COVID long term, about unusual symptoms, about the antibody tests. What I found out over the course of my night in the ER is that doctors and nurses still had no idea what COVID was about, but they all agreed it was weird and getting infected in mid-March at the onset of the outbreak meant that I was one of the first people in the U.S. to be dealing with LongCovid symptoms; I was the science.
My neurosurgeon likes me, as a person; I can tell because in my after-visit notes from the first time I saw him, he wrote that I was “bright and amiable” and transcribed what I told him when he asked if my neck cracked when I moved it: “like an undead lich rising from an ancient throne in his tomb in the empire of necromancers.” I’d been in bad shape on my initial visit for a pinched nerve; I’d lost 70% of the strength in my left arm, shoulder, and hand. He’d told me I could try physical therapy but that surgery was probably inevitable. I went so hard at PT that the next time I saw him and he gave me the strength test, I sent his wheely chair whizzing across the room and smashed him into the wall. I said, “Now, that’s remarkable!”
The emergency MRI showed that my spine was a little worse than last time, not by much. Surgery was not urgent. But my neurosurgeon was still worried about me. He said I seemed heavy, faint, deeply exhausted, muted. And there was still the matter of words slipping out of my brain, pins and needles in my jelly legs, a wildly overactive bladder. He had the ER doctors run a battery of other tests; all of them were clear.
I said, “Do you think all this could be COVID?”
He leaned back in his chair, pinched his eyebrow and said, “I don’t know. But you’re not yourself. So maybe.” He studied me for a long minute and decided: “Yes.”
I knew exactly who I was before I got COVID: a woman disposed to rise to every occasion. A bitch who gets stuff done. The person everyone relies on to do the thing no one else has the heart or guts or fortitude to do. A soft butch holding my family and friends and my whole little world together with nothing but love and tenacity.
I had huge plans when lockdown started. I was going to finish my book, remake our outdoor furniture, grow fruits and vegetables in my container garden, learn to cook Stacy’s favorite pie (strawberry-rhubarb), run a delivery service for my neighbors for prescriptions and groceries, and connect (and re-connect) with my dearest family and friends.
I didn’t get a chance to do any of those things.
Stacy took over doing all the laundry and dishes and vacuuming and toilet cleaning and shopping and cat feeding and grooming — my jobs, the things I love to do, the homemaking projects I’d longed to be in charge of my entire life, the caretaking tasks made my days feel full and valuable — while working day and night from her makeshift editing suite in the living room. The only thing I saw beyond my bedroom walls was the sky outside my window: grey then blue then purple and gold and cinnamon and orange then black then grey again.
Before COVID, my friends and I spent glorious weekends gathered around a table in my living room, sharing meals and wine and stories from our weeks and hours and hours playing Dungeons & Dragons. The real world so often tried to rob us of our power, but inside our D&D campaign we were unstoppable heroes. We saved towns. We slayed beasts. We made an entire queer universe of inside jokes. We moved our game online during lockdown and I told my friends maybe next week I could play, and maybe next week I would feel better, and maybe next week I’d be back to my old self. When I finally told them they should start a new Dungeons & Dragons game without me, that I wasn’t really getting better and I didn’t know when I would feel okay again, I laid in Stacy’s lap and sobbed with such fierce and broken hoarseness I didn’t even recognize the sounds as my own. I told my therapist, over Zoom, in my bed in my pajamas, that I’d only ever heard people cry like that at funerals before.
“I’m losing everything,” I told Stacy. “I’m losing me.”
My neurosurgeon called me on a Saturday, out of the blue, two weeks after my MRI and said, almost giddily, that he’d asked all of his colleagues and finally found something he thought explained what was going on with me: dysautonomia. That same day, during a Q&A with my LongCovid support group, a different neurologist made the same guess. And so I made an appointment with a cardiologist who specializes in dysautonomia and dragged myself back into Manhattan to be disbelieved by another doctor. I dressed nicely. I had all my paperwork in order in a crisp manila folder. I typed out the main words that kept falling out of my head in the Notes app on my phone, just in case. I’d taken a series of videos on my phone of my heart rate and blood pressure using five different devices total, over the course of two weeks.
I started listing off my symptoms as soon as I sat down in the cardiologist’s office, and within 30 seconds, she held up her hand to stop me. Here we go, I thought. She wants a positive COVID swab or a positive antibody test or this is just anxiety or what happens after a cold and buck up and take a nap and you’ll be fine.
Instead, she said, “I know exactly what’s wrong with you.”
I blinked at her, stunned into total silence.
“You have postural orthostatic tachycardia syndrome. POTS.”
POTS is, in fact, a form of dysautonomia. A person’s autonomic nervous system controls all the things we don’t think about, like heart rate, blood pressure, circulation, digestion, body temperature. When people with POTS sit up or stand up, our autonomic nervous systems can’t properly control our circulation, so all the blood rushes out of our heads and down our bodies, ultimately pooling in our feet. This, of course, makes us very dizzy, to the point of passing out, and also causes our hearts to start beating like mad and our blood pressure to go berserk to try to get our blood back up into our brains. It also causes big time spikes in adrenaline, because our fight or flight systems are almost always activated. Our hearts are often in the cardio zone all day long, and so of course we’re exhausted.
POTS can be caused by many things, one of which is a viral infection. I was this specialist’s first post-COVID case; she said maybe I was the first diagnosed post-COVID POTS case in the entire city of New York.
I jumped up when she diagnosed me; nearly passed out; sat back down, hard; and started to cry so hard my tears soaked through my face mask.
“It’s called an ‘invisible illness,” the cardiologist explained, “because you look fine and your tests and lab work also look completely normal. But it affects every single system in your body. And you feel absolutely miserable. Doctors almost always write it off as depression or anxiety.”
Every morning now when I wake up, I sit up slowly in bed and lean back against my headboard. I drink a full liter of water, eat some salted almonds, put on my compression socks for the day, and take a beta blocker for my heart and an SNRI to keep my adrenaline more in check. After 30 minutes, when my body has adjusted to sitting up, I can stand.
Downstairs, I make the first of three Liquid IV drinks of my day and eat a small breakfast. I drink four liters of water, total, and take more SNRIs and beta blockers as the day progresses. I sit on a stool when I take a shower. I sit down at a little portable table to do all the vegetable chopping and potato peeling for our meals. I wrap an ice scarf around me and sit down near the oven to cook. I use my office chair to wheel around the kitchen when I’m putting away groceries or dishes. I use a cane when I leave the house, which I only do for doctors appointments; it folds out into a stool so I don’t have to sit on the ground.
My cardiologist asked me on my second visit how I was adjusting, emotionally, to having a disability.
I said, “Do I have a disability?”
She said, “Well, yes. I thought you knew.”
Before I left for my most recent trip to the hospital, Stacy checked my backpack to make sure I had everything I needed. She tucked my facemask straps behind my ears, and kissed me on the forehead. “If they don’t have your wheelchair ready when you get there, ask for it,” she said. “Okay?”
I said, “I will, I promise,” and smiled with my eyes so she could see it.
Stacy is scared to be overbearing, because I’ve always hated being told what to do. She’s scared to be underbearing, because my brain fog has made my cognitive functioning less sharp, especially in the morning and at night. She’s scared I’ll do too much, because I’ve always done too much my entire life, that I won’t listen to my body, that I don’t even know how to listen to my body. She’s scared I’ll begin to feel angry at her for what she can do that I can no longer do, that becoming a caretaker to me when I’ve always been a caretaker to everyone else will create an emotional wound that will grow and fester.
She watches me open my pillbox first thing in the morning and slowly work out what I need to take right then and what I need to save for later; she asks if I need a hand; she pretends not to notice that I clench my jaw against her offer and the knowledge that, actually, yes, I could use some help. She leaves my bike, my most prized possession and my lifetime beloved hobby, untouched in the living room on its stand, because maybe one day I’ll be able to ride it again.
I’m scared too. Overachieving isn’t something I do; it’s always been who I am. Now that my sympathetic nervous system is misfiring in a way that makes simply getting through the day out of bed an achievement, there’s no energy left to overdo anything.
What will happen to my career now that I can’t show up early and stay late to help our community survive? What will happen to mine and Stacy’s lease now that I can’t keep my landlord extra happy by doing all the yard work and fixing all the leaky, crumbly, broken things in our house? What will happen to my friendships if I never have the energy or brainpower to sit at a table for five hours and roleplay zombie battles and villager rescues again? What will happen to my relationships with my family when talking on the phone wears me out, and I don’t know how to answer the question about if I’m feeling better? How is it possible that Stacy won’t grow to resent me when I can’t even walk two blocks to pick up my own prescriptions, when my newly diagnosed illness is already eating into our savings, when I can’t stand in the hot kitchen long enough to make our favorite soup, when I can’t even really carry on a conversation at night because my brain and body are so spent?
What if I’m not disabled enough to use the word “disabled?” I’m a person with a huge platform; what if I talk about disability in the wrong way, or miss the mark on my advocacy because it’s (shamefully, mostly) new to me? What if I hurt people who are already hurting with my naïveté, or accidentally dishonor the work of the queer disabled activists who came before me, some of whom I love and cherish as dear friends? What if I can’t find the balance between hope and acceptance? What if I become one of the 30% of POTS patients who are too disabled to work at all?
Is a soft butch a soft butch if she can barely hold even herself together? Is a soft butch a soft butch without her swagger?
Yesterday, I called Stacy on a banana-phone; walked from the kitchen into the living room where her office is set up and ring-ring, ring-ring-ed. She looked up from her computer monitor and saw me holding a banana to my ear and quirked her eyebrow. “Hi yes,” I said, “This is the last banana and I was wondering if you were planning to go to the store for more bananas in the next few days and so I can go ahead and use this in my smoothie or should I save it for a banana emergency?” She wanted to be annoyed with me because I was interrupting her workday and she was on a deadline. She wanted to be miffed because I’d pulled her out of her creative flow. But her mouth twitched into a smile because I was asking her for something I needed and could not do for myself, and I was being ridiculous, and it’d been so long since I’d been ridiculous. She said she’d run out to the grocery store tomorrow. I thanked her for her time, hung up the banana-phone, and turned it into a microphone to interview our cat Socks about the rumors that he’s a marshmallow head.
I’m scared, but I’m alive.
I’m scared, but I’m not broken.
In LongCovid support groups, we say our name and where we’re from and how long we’ve been sick. I’m Heather Hogan from New York City. Week 19/Day 133.