The death toll from COVID-19 — more than half a million nationally and nearly 24,000 in Illinois as of mid-April — is nothing short of devastating. But to focus on mortality alone drastically understates the impact of this disease. For every Cook County resident who’s succumbed to it, more than 58 have pulled through, and many of them are still contending with life-altering consequences.
Chicago talked to 10 survivors of severe cases. Some caught the virus during the early days of the pandemic, when testing and treatment protocols were being frantically developed, while others contracted it more recently. Most could be described as “long-haulers,” people who suffer physical and mental aftereffects months after first testing positive. A few are dealing with long-lasting complications from the emergency intubations and medically induced comas required to save their lives. The very sickest describe harrowing hospitalizations, weeks or months of isolation, and a terrifying struggle to draw breath. Even those with milder cases now have mysterious, lingering physical effects — thinning hair, rashes, brain fog, tongue discoloration, out-of-control heart rates — most of which doctors aren’t sure how to alleviate.
These survivors, who range in age from 23 to 68, hope that the details of their ordeal will persuade others to take the virus seriously, so that they will roll their sleeves up for a vaccine shot. They all expressed gratitude for modern medical care and second chances, but each experienced the disease in a distinctly different way. Their stories, presented here in their own words, serve as postcards from the brink, and sometimes from beyond it.
I.
“Help me, there’s something wrong”
I caught it right at the start of all this, and I’m grateful for that. If I was gonna get sick, at least I didn’t see it coming.
It was allergy season, and for a while I thought that’s what it was. But I felt worse that night, and I was like, OK, maybe this is something more.
I was still thinking, It’s probably a sinus infection. But then I started losing my voice.
I was watching Tiger King, and I totally missed large sections of it. I just remember fading in and out of awakeness. My husband was out of town, so I was just curled up on the couch by myself. And I’m like, This is a really shitty flu.
I went from a cold and sneezing to this massive headache that would not go away. It lasted about five days. I think the most alarming thing for me was my hair started falling out.
I felt like I was having an anxiety attack because I couldn’t breathe.
It was like the flu times a thousand.
It was a Saturday. I said, “Something’s not right.” And then a few hours later, it just hit me all at once: I couldn’t breathe, I was gasping for air.
I had a dull headache and my stomach was kind of upset, and then in the middle of the night it felt like there was an elephant on my chest.
You feel short of breath. It’s almost like an air hunger — you can’t get enough.
We decided to play it safe, and my husband moved out of our bedroom. He walked around with all the Lysol bottles, spraying everything. He moved to the basement for a month — it might have been longer. Eventually, I was like, “Are you ever gonna come back to our bedroom?” Maybe he likes it down there too much? Because, you know, 21 years of marriage.
I just got sicker and sicker. That night, I had the worst sore throat I have ever had in my life. It was like swallowing glass. It consumed everything. At 4:30 in the morning, I messaged my doctor and literally said, “Help me, there’s something wrong.”
It was like, If I go into the hospital, I’m gonna die. They don’t know what to do with this whole thing. Maybe I’ll take my chances, stay right here. I’ll just keep drinking Gatorade, maybe it’ll be OK.
The X-ray came back with signs of what they call ground-glass opacities, which are indicative of COVID. But I wasn’t considered sick enough to get a test. Now you get it if you have a sniffle.
My boyfriend would buy me groceries and set them outside. Then I would put on all my PPE because I didn’t want to contaminate anything on the elevator. Then I’d go down and get the food and come back up.
By the time I was begging to be allowed into the hospital, I couldn’t get in because I could not prove that I had been near someone who had confirmed COVID.
It wasn’t just the fact that you feel like you’re dying, but they’re literally telling you, “We don’t know what else to do except to give you intravenous solutions and some Tylenol.”
I was living for the hour at which I could take that Vicodin again.
I don’t remember getting sick. My fiancée said she took me to the hospital. I don’t remember that. The only thing I remember is waking up. It’s tough because I want to remember so bad. But it’s probably a good thing that I don’t.
They didn’t want my wife or daughter to even come into the ER. The nurses met me at the door, and my daughter fell apart because they grabbed me and pulled me in so fast that she wasn’t able to give me a hug or say goodbye.
When my wife dropped me off at the door, the thought that this could possibly be the last time that I see her — that was probably the hardest part. I just felt like I was dying.
II.
“I really didn’t know if I’d wake up the next morning”
Hospitals are already scary enough, but these people show up in the equivalent of moon suits. The first person was a very stern young nurse. And she said, “We can only be in here for a few minutes at a time. Therefore, if you need anything, you need to think about it.”
You don’t see humans as humans in the ICU because everybody comes to your room in masks and goggles and gloves and gowns. You only see their eyes, and they’re looking at you. And everybody looks alike.
The horrible thing was hearing people groaning and dying around you. That was horrendous.
I had fabulous nurses, fabulous doctors. All very attentive. But they were scared.
You find yourself trying to comfort the people that are trying to help you. Because they can’t do anything to fix it.
I remember more than a couple of days when my sheets were just soaked. I couldn’t even sit in them. So I grabbed the coat that I had come with and wrapped myself in the coat because it was drier than my sheets.
You don’t do anything except focus on taking another breath. You focus on making sure that your oxygen is in your nose. I would try to stand up, stretch out my arms to take in deeper breaths until I physically couldn’t. And then I’d just collapse into the bed.
I don’t think I slept much, except when I would pass out. I was just basically pulling all-nighters, just counting my breath, almost like a yoga exercise. I was very conscious of my breath. It was the only thing that mattered.
I had to have the nasal cannula. And it got to a point where the oxygen would dry my left nostril so bad, I would get gushing nosebleeds.
My wife and daughter were calling me, and I pretty much couldn’t talk. So I hung up. I felt like I was gonna die. And I thought, Do I call them back and say goodbye? But what are they going to do? They can’t come here, they can’t do anything. I decided not to make that phone call.
I never went on a ventilator. When they started talking about it, I said, “Just turn up the oxygen. I’ll take my chances.”
When they mentioned the ventilator, I was like, “Hey, go ahead, knock me out. I’ll either wake up or it’s done. I can’t lie here and suffer like this anymore.”
Each time they took the oxygen off me, my level would just drop instantly. The doctor said to me, “There’s a possibility that we may have to intubate.” The only thing I could do was say OK, because I knew that I couldn’t continue, the way I was feeling. The next thing I remember, it was about seven days later, and I came to in the ICU, and I had no functions — my arms, my legs, no strength at all.
My son took a picture of me while I was intubated, and to look at that picture, it’s humbling. It is a life-changing experience to be so close to the other side.
Supposedly the last thing people lose before dying is the hearing, so the nurse would have my phone in my room, fully charged all the time, and my wife would call me every day and the nurse would put the phone to my ear. And then my family would talk to me for about five minutes, just say stuff. I don’t remember any of it, but I had dreams about my wife next to me in the room crying.
I woke up from two weeks being sedated and I thought I’d been asleep for a night. What happened to Memorial Day? What happened to my buddy’s birthday? And why are there roses in the room? How can I have missed saying “Happy anniversary” to my wife?
I was taken off the ventilator after two weeks, had some issues breathing again, so they put it back in again for two more weeks. I was sedated, totally, the whole month of May. When you’re in a horizontal position for that long, you lose a lot of muscle mass and you lose a lot of abilities. You basically cannot walk, you cannot swallow. You can’t shave, clip your nails, brush your teeth.
I remember specifically they’re like, “What year is it?” And I’m like, Oh no.
I was told my lungs did give out at one point, and out of nowhere, they just restarted. I know there was about two or three occasions where they let my family know, “Hey, you better come see her.” But only through the glass. They weren’t able to go in the room, hold my hand, nothing.
I told my boyfriend, “Look, if you want to move on, it’s OK.”
A thought in the back of my head was: I don’t want to leave my parents, I don’t want to leave my little sisters, my dog. I just want to keep going. I want to finish everything I started.
There were more than a few times that I really didn’t know if I’d wake up the next morning, and I kind of just figured, maybe this is how I go.
I had the worst hallucinations. In my mind, I thought I was kidnapped. I would dream about horrible, horrible things.
I had vivid dreams about just having cold ice water on a balcony or in the backyard.
My dad’s been gone now for 20 years, but I remember seeing my dad and aunt and uncle, my grandparents, and I remember saying, “I’m not ready to go yet.”
I literally had a Jesus moment. I explained it to a relative who’s a clinical psychologist and who wanted to use all types of terminology to explain it: hallucination, delusion. I said, “No, this was a Jesus moment.” It was a physical touch of assurance. An overwhelming, deep sense of assurance that everything is going to be OK. A feeling of wholeness, a feeling of completeness, a feeling of universal connection.
Two things kept me focused on surviving and living. One, my family. The second thing was, I wanted to live so I could enjoy a gin and tonic.
Everybody was amazed when they saw me alive. The office was praying for me every day at 3 o’clock, a moment of silence for me.
My son showed me a video he took of people standing outside the hospital with candles. And they were praying for me to survive. I was very emotional when I saw it.
My wife definitely had the prayer warriors out there. Because when I got home and I finally looked at my phone, there had to be 200 or 300 texts and voicemails.
My first doctor’s appointment after I got out, I go in and everybody in the office is standing up and clapping and cheering. They all said, “You’re our hero, you made it!” I guess it just wasn’t my time.
III.
“Please tell me this is going to go away at some point”
I had to relearn how to drink stuff, how to eat stuff, make sure I was even swallowing properly, or else anything would go into my lungs.
I was like a little baby trying with both hands to get this little piece of Popsicle up to my mouth. The first piece I dropped, and I could just feel this cold Popsicle sliding down my stomach. And I started looking at the other piece that was still on the tray. Finally, I managed to get my one hand on the stick and the other hand up under the Popsicle, and I slowly worked it up to my mouth. And it was like heaven.
There’s speech therapy that you have to do because your vocal cords get damaged from the ventilator.
I cracked a tooth in the hospital. I didn’t realize it until months later. It was from the stress of biting down because of the pain. Now with COVID they’re finding large numbers of people who have cracked teeth.
I was so stressed and anxious that my entire body was jammed up. I still have a frozen shoulder that I’ve been working on for months.
There are the acute infections, and then there are the long-haul infections — actually, we don’t even know if it’s an infection anymore. We don’t even know what it is.
My immune system basically brought a bomb to a gunfight. It just went nuts trying to get rid of this virus. The problem is that it doesn’t really shut off.
I said to myself, I may have made it, but how much is broken?
A lot of stuff that COVID throws at people feels like a fight-or-flight response: You can’t catch your breath, your heart’s pounding. It’s really hard to endure that over and over again without giving it power over you.
The accelerated heart rate and tachycardia stuff is really unpleasant, scary. It feels like you’re dying.
In our Facebook group, we call that elephant on your chest the “COVID strangle,” because it’s just this tightness from your throat to your chest, where it’s constrictive and hard to breathe. It’s really hard to put it into words, but extremely uncomfortable and scary, and very common among long-haulers.
The hair loss — as a woman, it’s really embarrassing.
I have zero alcohol tolerance now. At my friend’s house last night, I had two beverages and had to sit on the couch for hours.
You get aftertastes when you eat certain foods — spicy foods or foods heavy on the sauces. They said it’s the taste buds basically trying to recover.
A year in, I still can’t smell anything. Which is really something that I grieve about.
I can’t tell you how many times I’ve burned food because I can’t smell it burning.
My boiler went out the other day, and I was trying to relight my pilot light and I was just terrified because I couldn’t smell if there was gas.
I’ve always been a big smell person. I’ve worn the same perfume for 25 years that I pay too much money for. I’ve always just loved smells and scents. So it’s remarkably disconnecting to not be able to smell anything. It just creates a sense of detachment. It just doesn’t feel like you’re quite part of the world.
That lovely smell of rain and warmth and dirt. That wonderful smell when you approach a body of water — you just miss that whole transformative part of how we think and remember. Having it gone is just profoundly disorienting. And not being able to smell your babies? It’s awful. But also kind of a blessing.
I think I’ve napped more than I’ve ever napped in my entire life.
I vacuumed once in May and I was down for three or four days, and by “down,” I mean I couldn’t do anything.
I would shower, and then I would lie down on the carpet, wrapped in my towel, because I didn’t have enough energy to actually get dressed.
The fatigue is hard to describe. It’s pretty overwhelming.
I have to divvy up my activity. If I want to do a workout, I can’t go to the grocery store or make dinner that night.
Making dinner is not supposed to be an event. I’ve been doing it for 20 years now. But it has become one now.
My voice is not the same. I used to be very high-pitched. I used to sing a lot. Now it’s really hard.
There’s a thing called COVID rash. Out of nowhere, you’ll get random rashes on your hand.
They’re like, “You should see a liver doctor.” I’m like, “OK, maybe I will, but that’s not why my hands look like I’m an 85-year-old woman.”
You’ll have irritable bowel syndrome one week, and then the next week it’s rheumatoid arthritis.
After a shower, my calves would be just all blotchy. All kinds of funky stuff like that. I had a white tongue for a while. I remember asking my husband, “Why is my tongue white?” And then I read an article last week. Apparently the CDC just added that as a symptom.
I’ve lost night vision in my left eye.
My stomach and guts have been the most disturbed thing. I still have a very uncomfortable and complicated relationship with the toilet.
I was having a period every month until I got sick, and then I never had a period again. I went through instant menopause.
I wouldn’t be surprised if I woke up one day and COVID made me grow a dick. I’d be like, Yeah, of course, COVID grew me a dick. It’s just like any fucking thing could happen.
I’m currently trying a drug called ivermectin. It’s sold as a livestock deworming medication. That’s the only way I can get it. It does make you feel kind of desperate to take horse medicine. But I am desperate.
My two younger children got COVID, too, and had what I would say was just a typical kids’ illness, like stuffy noses and puked a couple times. But my son who is almost 18 has been on his own long haul. He still has headaches and has a hard time returning to his previous level of activity. He has his own relationship with a headache doctor now. He and I are always trying different things, which is kind of fun to have a partner where I’m like, “All right, this week we’re eating powdered hypothalamus.” “What is this supposed to help, Mom?” “I don’t know, something about your mitochondria — just eat up. Eat your hypothalamus.”
POTS stands for postural orthostatic tachycardia syndrome. You have a hard time when you change positions from lying down or sitting up to standing up. Your heart is not efficiently moving that blood around your body. Compression socks help. I’m like, OK, my grandma wore those.
I’ve never in my life had high cholesterol. It’s always been conspicuously low. But I had it tested and it went sky-high out of the clear blue. I had some liver enzymes that were off, stuff that’s worrisome down the road. And then you read about all this potential for dementia later. It’s pretty alarming.
They call it COVID brain fog. It’s like I couldn’t seem to put two and two together. I would forget people’s names, forget what I was saying.
I still have what I would call very good associative thinking, associative memory. But then I won’t be able to pull a simple word, or I’ll sub in the wrong word. Someone was telling me they’d gone to a chiropractor, and I was like, “Oh, that’s interesting, have you worked with a choreographer before?” They’re like, “It’s a chiropractor.” And I’m like, “Right, a choreographer.”
Being someone with fibromyalgia, I know what cog fog is like. But this kind of cog fog is literally like you’re looking at the Sears Tower and the clouds roll in and block off the whole top. That’s what it feels like. It’s just like your brain’s done. I’m like, “Please tell me this is going to go away at some point.”
I’m a reader. I read a lot of philosophy, theology, history. I’d read two, three pages and then realize I hadn’t retained a single thing. It was the first time facing up to a significant diminishment, one like I’d never had in my life. It was psychologically overwhelming.
I don’t send out emails in the afternoon anymore. I don’t make any big decisions in the afternoon. I’d find myself at work the next morning, seeing a pile of drafted emails that I swore I had sent out. The grammar was bad, there were misspellings. I’m a very good writer, very good organizer of things, but now if something hasn’t been written down, I’ll forget it.
A lot of times, I’ll lose a word and I’ll be like, “All right, kids, come on, it’s tall, it’s brown, it’s green on the top.” They’re like, “A tree?” I should make a board game out of it. We’ll call it Aphasia: The Board Game.
I was like, I’m losing my mind.
There’s a lot of relapsing. Well, that’s what we call it. We don’t really know what it is. We don’t know if it’s just some mechanism in the body where there’s like heightened inflammation or something else kicks in.
There’s nothing like thinking you’re getting better only to then have the disappointment of not being better. That’s where the Prozac comes in.
Will my body eventually get rid of this? Will these diagnoses be behind me? Will they be something that will flare up if I get sick again? That’s all unknown right now.
IV.
“I am not the person I used to be”
This illness has humbled me greatly, and it’s just knocked out any need that I have to be seen in a particular kind of way. So I suppose, you know, it’s a pewter lining? A gray lining? I don’t know that I’d call it silver.
I pray a lot more. I’m grateful a lot more. I take my family a lot less for granted. And I certainly have a much deeper appreciation for every day.
I never had a will before this. You can be sure my advance directives and my will are very clear now.
I still cry almost every day.
I don’t sit around feeling sorry for myself or constantly thinking about it. You know, because who would you get angry at?
The two big things: an overwhelming sense of helplessness and a diminishment of self. That is, you lost a bunch of stuff, and you still don’t know all that you’ve lost. My world today feels way smaller than the prospects that I thought I’d have. Everything is reassessed.
This has by far been the biggest, most extended shitshow of my life. There’s no contest.
They did some bloodwork and said, “We think you need some more time.” I was kind of like, “OK, this is the end of August. I got sick in March. How much more time are we talking?”
I feel like I’ve aged physically somewhere between 10 and 15 years.
I am not the person I used to be. That’s for sure.
It’s been hard on my kids having a sick mom. They’re really kind children, but everyone’s kindness takes a few hits when you’ve seen the inside of the same four walls and each other’s faces for a year.
I’m so profoundly grateful to have my mind alive, even though the rest of me sits here like Jabba the Hutt after a bender.
Outside of health care, people were like, “You had COVID? Was it just like the flu?” They had no concept of how it can impact your day-to-day life.
It’s not as if doctors have this magic answer that they’re refusing to give. Finding someone to take it seriously is about the best you can hope for.
There’s only one post-COVID specialty guy that I’m aware of, and he’s booked out through 2022.
It worries me that so many people who have been affected by long COVID are middle-aged women. It doesn’t give me a lot of hope for it being prioritized.
I have good insurance. I know a lot about the health care system and how to use it. If I can’t figure out how to get effective help, it’s got to be damn difficult to get effective help. And all these pills and potions and nostrums aren’t cheap. And all these lost productivity days are not cheap.
COVID helped me to learn how to ask for help, how to just open up and realize that you need your friends and family, you need that support system. I didn’t really think I needed it until I got this sick.
I don’t do social media, but I broke my social media rule to join a long-haulers’ group. And it’s definitely been helpful to have a cohort who is going through the same stuff in real time. Everyone has a tendency to start wondering if it’s all in your head. And then you can open up any one of 10 long-hauler chat boards or Facebook groups, and you see the same stuff. It’s just nice to have a little bit of affirmation — not necessarily that you’re going to get better, but that at least you’re not fucking nuts or a wimp.
I was connected with another long-hauler, who lives in Washington. We’ve actually never met, but we have talked on the phone and we text each other constantly. We send each other articles, we give each other updates about doctor’s appointments. If I’m having a bad day, she’s the person who gets it, because she is living it. That’s been just a true gift. I had an episode with my prednisone, and I texted her and said, “You have a minute?” And it’s dinnertime. And she has four kids. And she’s like, “Yeah, absolutely.”
What are we long-haulers going to look like in a year? Are we just seen as this cohort of people who, oh well, they didn’t die? Or is it going to be something that mobilizes health care in any kind of significant way? Or do we all die in two months? For all I know, I spontaneously combust tomorrow. I would not be that surprised.
I do think that a lot of the stuff that will come out of this as official treatment protocols will have been originally mined by the community of sick people who couldn’t get answers, and that’s kind of cool.
There’s a real temptation to go down the rabbit hole of making illness your identity. When you’re housed in a body that’s badly malfunctioning, it’s hard not to feel like that’s who you are.
After a while, it can just only take up so much of your life, and you think, Well, I’m functioning. I feel like shit, but I’m functioning.
I just want to be able to have a sense of humor that feels real again, as opposed to something that I’m utilizing as a coping strategy.
When I could taste something again for the first time, I was so happy. I put cayenne pepper in everything, made everything super spicy.
In our house, I have a thing about making posters. For everyone’s birthday, I make a poster and I decorate the house the night before. But then I was like, No one ever makes me a poster. So I’m making a poster on my 100-day anniversary, because I’m surviving this crap.
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