A little over a year ago, the first few cases of COVID-19 started cropping up in the U.S. Today more than a half-million are dead. What was thought at first to be just a worse version of the flu turned out to have left an indelible scar on the lives of many who survived. Five of them reflect on the toll that the virus has taken.
Andrea Ceresa, 47, Branchburg, New Jersey
“I’ll just file for bankruptcy.”
April 17 was the first day I woke up feeling really ill and had symptoms. I got out earlier that week for groceries. At the time, I had health insurance through my job. I managed a dental office. That was my day job; I sang at night.
I had the regular flulike symptoms, exhaustion, and 65 days of diarrhea. I’ve continued to have gastric issues, severe nausea, vomiting, brain fog, and partial hearing loss in my left ear. The hearing loss was very detrimental to me as a singer. There was never really a time where I was better. My body just deteriorated over time. I have not worked since quarantine.
At the beginning of May, my employer gave me an option: Stay on my insurance and pay the full premium myself, or go off insurance. I decided to stay on and pay the full premium out of pocket — about $550 a month. Between April and August, I went to the emergency room four times due to dehydration, severe migraines, and vomiting. I went to hospitals here in New Jersey, which I have insurance for, but I didn’t get any better and the doctors didn’t have the expertise of treating long-COVID patients. In August, I was finally able to score an appointment at the post-COVID center at Mount Sinai, where I’m being treated. I knew going to Mount Sinai was going to be out of pocket, and I didn’t have the money but it was the only resource I had.
In November, I had to be hospitalized for nine days at Mount Sinai. The hospital bill I received for my stay was over $133,000 — and that’s not including the cost for individual doctors who came to see me each day. According to my insurance, each visit can cost anywhere from $440 to $1,200. That’s on top of the over $22,000 I had paid leading up to my going to Sinai.
Two of my cousins started a GoFundMe page. I’ll just file for bankruptcy if it turns out that way. I was perfectly healthy before this all started. I had a successful career; I was very organized. Now my brain is on fire. It’s 11 months in, and I’m really tired. I don’t want to be sick. I want to live.
Mihee Kim-Kort, 42, Annapolis, Maryland
“There’s something that compounds the diagnosis when you’re Asian.”
At the very beginning, when the virus was exploding, there was a lot of rhetoric around it being the “Chinese virus.” Then you hear all the stories of elderly folks that are Asian American being targeted and getting hurt in public. All of that compounds the anxiety and uncertainty around going out. I remember one time, I was walking down an aisle at a grocery store with my cart, and someone was walking toward me. We made eye contact and then he turned around and took his cart in a wide circle around me. In that moment, it was just hard not to wonder if there’s something else going on there.
My husband is white, and I think he felt a lot more uneasy than I did. At the beginning of the pandemic, we were living in Bloomington, Indiana. I’m a doctoral student in religious studies at Indiana University. Even before the pandemic, I experienced racial aggression, from getting yelled at by a driver (“Asian lady, you need to learn how to drive!”) to just walking around campus, meeting someone for the first time, and getting asked, “Where are you from? Are you an international student?”
I got COVID in mid-January 2021. Our oldest child got sick, and we thought it probably was just the flu. Our child-care provider advised us to get tested. I got tested, and it came back negative. Then my spouse lost his taste and smell. I went to a walk-in clinic: I had shortness of breath and a fever that wouldn’t come down below 104 for two weeks unless I took Advil.
At the clinic, I felt this distance — almost like they were waiting for me to confirm that I’m not one of those Asians, like I’m not an international Asian coming in maybe from China. There’s this weird feeling when they’re waiting to confirm that you speak English, that you’re a U.S. citizen. I feel like I look pretty “American” in the way I dress and carry myself. And even when they register your name, they might think I’m not an assimilated American with an American name. Sometimes I feel like that’s all in my brain.
I definitely didn’t want it to be publicized that I got COVID at first. We were holding back because we were concerned about how it would be perceived: Were we being irresponsible? And then there’s the whole racialized aspect of it. There’s something that compounds the diagnosis when you’re Asian, and it continues to make me feel self-conscious.
Liza Fisher, 37, Houston, Texas
“Just because I’m in a wheelchair doesn’t mean I can’t use the gym.”
I haven’t walked since I went to the ER in late July.
At the time I got COVID, I was recovering from a shoulder injury. I’m a flight attendant and injured myself. We hit turbulence, and I went through a lavatory door and busted it off. I was just preparing to go back to work.
My friend from Dallas was on the phone trying to schedule a test because I could barely talk. Because tests were so difficult to get, I made an appointment with an urgent care for July 6. But on that call, the nurse said, “You sound bad. You need to get to a facility right now.” I went to an emergency room. That’s when I got a COVID test that came back positive. They did a chest X-ray and found pneumonia. They sent me home that day because I had no preexisting comorbidities. I was athletic and a part-time yoga instructor. Two days before I started to not feel well, I went on a run.
My symptoms started off respiratory. Then the neurological symptoms crept in: brain fog, seeing spots. Then I started falling, which I thought was due to dehydration and malnutrition at the time. Later on, I realized it was probably neurological.
Around August 15, I developed full-on body-debilitating tremors, which prevented me from walking. I was put in a wheelchair. I wasn’t able to put my heels on the ground, so I started walking on my toes. Next, my feet were scissoring, but I wasn’t aware of it.
Since I’ve been in a wheelchair, I’ve noticed my neighbors treating me differently. They used to chitchat a bit more, but now they avoid eye contact or, instead of walking right by me, they might move to the other side. It may be because they’re not wearing a mask all the time and I do, or maybe it’s just the discomfort of seeing me shaking in a wheelchair.
In November, I had a neuro-spinal implant placed. I wanted my life back, and I was going to do whatever it took. That was able to calm the tremors in my legs. Since then, it’s been a lot more of dysautonomia symptoms that have been preventing me from walking.
My mother moved down to stay with me, and at first it was just too much to try and move. We’re trying to figure out if we can move into a one-bedroom. Who wants to be 37 living with her mom in a studio? Apartment searching and trying to find something for a wheelchair is absolutely ridiculous. At some places, the office personnel showing us the complex will only look at my mother. Some places show me the gym, and other places will completely skip over it. Just because I’m in a wheelchair doesn’t mean I can’t use the gym.
As of December 10, my health-care plan had billed me for $536,000. My plan paid for most of it, but I still owe around $150,000. That doesn’t include my bill for the implant. The medical bills lag; it takes months for things to come through. At first, it was stressful for me to look at them, but now it’s a joke. I look at them and think, I don’t know how to pay that. My premium is $750 a month, and my co-workers have been chipping in to cover that.
Over the last year, I learned that our health is not something to be taken for granted. That seems so simple and cliché, but it’s the truth. I once said, “I’m young and healthy. I’m a yoga instructor; I can inhale and exhale on a count of ten. If I get it, it will be like the flu for me.” I said those words out loud, and here I am a year later in a wheelchair.
Emily Withnall, 39, Missoula, Montana
“I’m drawn to other single parents because they get it.”
I have Medicaid and food stamps, and I always have. I live under the poverty line, and I’m a freelance writer so I’m very used to juggling a lot of things and just making it work. But trying to do that while being super-fatigued and sick has been really difficult. I’ve now been sick for eight and a half months.
I’m a single parent to a 14-year-old and a 17-year-old. The pandemic has been challenging for my oldest, Alex, who is now a senior in high school. They were the first to get sick. They have a room in the basement, but we only have one bathroom in the house. It was just impossible for us not to be in common spaces. But about a week after they first had symptoms, I got my first symptoms, and my daughter also got symptoms.
I had severe pain early on, and my kids helped with cooking. I had friends who did grocery drops for me, which is a little tricky because I have food stamps, so they had to physically use my card: I would put on a mask and gloves, sanitize my EBT card, put it in a Ziploc, and put that in my mailbox. Then someone would come pick it up and pick up the groceries I had ordered.
I felt like I couldn’t take care of my health and try to get some work done so I could get some income and make sure my kids were doing their schoolwork. That was all just too much.
Alex has struggled with not being able to be with their friends and plan for their future. They wanted to get a part-time job to start saving up for their next steps, and I have not let them do that because I’m worried about reinfection and new variants popping up. It’s just a scary time to transition from high school to being on your own.
My daughter did online school in the fall, and it was a constant battle. I was too sick to really monitor it, but then I would realize she missed all her classes because I would get a call, an email, and a text at the end of every day. She finally asked me if I could homeschool her in the spring, but I don’t have the energy or time or space. In the end, I asked her to come up with a curriculum for herself. I’m making it up as I go.
I don’t have a strong sense of community here, and I feel like the pandemic has made that even harder, especially as a queer single parent, which has its own feelings of isolation. I’m drawn to other single parents because they get it. Even though we’re all stretched so thin, we’re the ones who show up for each other the most because we get it. I think the pandemic has really helped me realize I need community.
Lakynn Mason, 33, North Richland Hills, Texas
“Little did we know that we would end up all still living together.”
My dad had a stroke in 2005, and he’s also a disabled veteran. Then in 2010, my mom had a stroke and required multiple surgeries. I decided I would take care of my parents. Little did we know that we would end up all still living together. My parents also help with the kids, which is helpful because my youngest is autistic. My younger brother and sister are also staying with us; my sister is trying to get herself financially stable. We’re not in the business of kicking people out before they’re ready.
We have four bedrooms in our house. There was definitely a way for us to all self-isolate, but it didn’t end up doing us any good because we had all been exposed. From the start, we had a game plan: Bedrooms are reserved for sick people. My sister works in the schools, and my husband also works out of the home and they’ve been exposed. So we’ve had to quarantine quite a lot.
In my household, I’m Mom. I’m a medical assistant but not currently practicing because I’m staying home with my kids.
When everybody was in the thick of it, a lot of it fell on me: I was the one with the training. I’m the in-home nurse. I was the one reaching out to doctors and nurses to find out what I needed to do, what I had to watch out for. I now have pulse oximeters in every room of the house, and I’m checking oxygen-saturation levels, pulse rates, and temperatures all throughout the night.
Virtual school has been an adventure. It’s challenging to keep up with because the girls want normal back. And virtual schooling with a special-needs child is challenging. They don’t want to be doing what they’re doing for school because it doesn’t benefit them in any way.
For me and my sister, the recovery has meant that our physical stamina isn’t back to where it should be. We get tired a lot easier than before. Having a lot to do around the house has probably helped because it keeps me busy. It keeps me doing something.
Because of the pandemic, we have to be a lot more conscious than we did before about things we didn’t think about. I’m still checking everyone’s oxygen-saturation levels daily; I check my little one’s heart rate and make sure she’s not being too rambunctious. We have to be a lot more conscious and a lot more aware of our bodies and each other than we were before. There are more things we have to worry about.
