Under the Long Haul | Stories | Notre Dame Magazine

Even in utero, my daughter danced.

When she started kicking, it was in rhythm to music. Maren Morris’ voice was her favorite — or her least favorite, who knows? She kicked a lot in response. But the lyrics were comforting to me, as were my daughter’s kicks, so we danced together. “Everything’s gonna be OK. . . . Everyone’s gonna be OK, baby girl.”

She was born to music. When we got to the hospital for delivery, a few months after a mysterious pandemic began sweeping the nation, I learned that my husband had thoughtfully purchased a Spotify subscription for the event — so Baby Girl and I wouldn’t have to listen to ads while we labored. Sometimes, between contractions, she kicked a lot. What uncertainty! She must have had no idea what was happening to her. I tried to soothe her by dancing. When the first song my husband and I had danced to at our wedding came on, we danced together with her: “Love was made for me and you.”

For several months after she was born, as I held her close, we swayed and bounced together to music. We were lonely at home and couldn’t go out because of the pandemic, so dancing became our main form of exercise. It brought us joy every day. She quickly learned to associate “We Are the Dinosaurs” with my original, two-part choreography, and we laughed as we moved around the room.

Then, in November 2020, my family got COVID-19.

My husband, a journalist, was covering an election night party. Organizers said everyone would wear masks. Only a dozen people (including him) did. Organizers said there would be social distancing. But photos the next day told a different story — attendees dancing maskless and close together without following the rules set forth (and apparently abandoned) by the organizers. After that night, our family and others got the disease.

I wasn’t particularly worried about my husband or me; we were both in our 20s and healthy. Having an active COVID infection wasn’t fun. (It was the sickest I’ve ever been, but that wasn’t saying much.) Our biggest concern was the health of our five-month-old daughter. As it turned out, her main symptom was fatigue, which meant she slept through most of our illness. Given how my husband and I felt, this was a gift. She recovered quickly, as did my husband.

By January 2021, though, I still wasn’t better; in fact, I was worse. Exhaustion beyond what I’d felt during the early postpartum weeks enveloped me. Brain fog ate away at my verbal and writing skills and my ability to navigate, even within our house. Something would occasionally force my heart to speed up and pound as though it were trying to escape my body. With even the slightest exertion, I would vomit. Dancing with my daughter, holding her close, was impossible. Just singing along to our favorite songs was enough for me to need the steroids my doctor prescribed.

‘I went to the emergency room multiple times for what seemed to be heart attacks. Each time, before I left the house, I held my daughter for a few moments, nursing her to sleep or rocking her to a song, hoping I’d return soon to hold her again.’

When my daughter turned seven months old, my complicated moves to “Chipmunk at the Gas Pump” were no longer feasible. The neuropsychological symptoms of my illness worsened; at one point, I couldn’t remember how to get from my bedroom to hers. My muscles ached when I moved her arms and legs along to songs, unable to hold her and sway to the beat, and I processed my new, official diagnosis of “long COVID.”

I went to the emergency room multiple times for what seemed to be heart attacks. Each time, before I left the house, I held my daughter for a few moments, nursing her to sleep or rocking her to a song, hoping I’d return soon to hold her again. I once refused an ambulance against medical advice because I was terrified of what the bill would look like — for us if I survived and for my husband if I didn’t. The nurse who answered the University’s after-hours line recorded my refusal over the phone, asking me to repeat that I wouldn’t hold the University liable in the event of severe injury or death resulting from my choice. But what I remember most from that night was that when we needed someone to babysit so my husband could drive me to the hospital, a list of names jumped immediately to mind. How lucky we are, not to be alone.

New symptoms kept coming. I couldn’t eat anything unless it was covered in barbecue sauce — otherwise it would taste like rotten meat. I lost 20 pounds without meaning to, and my body looked as strange to me as it felt. I started trying the suggestions made by other COVID long-haulers on the internet and approved by my doctor. First it was singing, then meditating; I tried to build up stamina, then to rest as much as possible; I cut out tomatoes, then tried eating more of them. COVID has become my unchosen dance partner, which means twirling all the way out to one side, then all the way out to the other, just hoping something works.

In April 2021, when my daughter was 10 months old, she started dancing when she was happy, not just when she heard music. Hoping to join her, I retried a medicine I had abandoned because it had left me shaking uncontrollably. It was the one thing that gave me the energy to dance, but the attempt would leave me miserable. My shaking made my steps jerky and rough, and my body did things I didn’t want it to do. I experienced it all as a drifting, embodied soul who couldn’t even hold her child for fear of dropping her. I shook whether I danced or not, watching but also sensing something confusing and scary happen to me.

I wore a heart monitor for two weeks. I had to wear a sweatshirt so my daughter wouldn’t touch the equipment. The monitor showed nothing. My doctor submitted my case to a long COVID clinic. I got in. We waited. Then the delta variant hit with full force, and I skipped a trip I had planned to introduce my in-laws to our daughter. We waited for that, too, but not peacefully. Dancing with COVID as an uninvited partner is a constant tumult and a constant waiting, an endless spinning and dipping that never resolves. The song never ends. It’s just breathlessness; no break.

When my daughter turned 15 months old, I began massage therapy in hopes that the constant muscle pain would subside. After my first appointment, I walked into our house, picked her up and . . . smelled her hair. I hadn’t been able to smell since my active infection; 10 months of being unable to smell that new baby smell, or even to know when a diaper change was necessary. I tried then to make up for the time I’d lost. Every day for weeks after that massage, and most days ever since, I’ve held my daughter and rocked her, smelling her hair in deep wafts, reveling in this gift I’d received, this small reprieve from the COVID dance.

My daughter turned 17 months old as I passed my first COVID anniversary. I cried daily, mourning the year I had missed. Such a large portion of my life, but a much larger portion of my daughter’s. So much time I hadn’t spent being the type of mother I thought I could be. Instead I’d bounce her on my knee to Disney songs until I’d throw up, pushing myself to exhaustion so she might have at least one happy memory of dancing with her Mama.

Finally, in the winter of 2021-22, one of the many medical tests I’d taken showed a result that indicated what might be wrong with me. The test was a stress echocardiogram, where you run on a treadmill and technicians take an ultrasound of your heart. You’re supposed to jog for about 20 minutes. I threw up so much that they called the test after seven minutes. The diagnosis: dysautonomia. Basically, something tells my heart to beat fast when it shouldn’t. The problem was, I’d already been following the treatment plan for over six months: Drink more water. Stand up slowly. Avoid exerting yourself to the point of vomiting.

Meaning, don’t dance.

‘Sometimes, I sit and watch as my husband takes my place, twirling our daughter and jumping with her in exhilaration. I sit and watch, and if the pangs of envy are strong, I observe them trying to overwhelm me and cheer my family on.’

As I learned to accept my new life and my new body for the foreseeable future, I also realized that I needed to find some way to move about the world that didn’t cause me to vomit. I started using a wheelchair to go farther than a block. That became a little light of hope. On campus, I could go from the library to Duncan Student Center without incident. My family and I took walks again. And with the extra energy, I could actually dance.

I started dancing while sitting down or lying on the floor. Where once I had swayed with my whole body, I now articulated movement with my arms. My daughter quickly caught on to this new style and now combines it with everything from deep squats to wild running, a strangely beautiful combination of the things we used to do together and the things I now do instead. Sometimes, I sit and watch as my husband takes my place, twirling our daughter and jumping with her in exhilaration. I sit and watch, and if the pangs of envy are strong, I observe them trying to overwhelm me and cheer my family on.

My daughter just turned 2. We’re teaching her how to wear a mask to protect her from the same pandemic into which she was born. We’re still waiting for my appointment at the long COVID clinic, which was pushed back eight more months. We try new medicines and new strategies. Sometimes we play with fire: a medicine that might help my brain might also raise my heart rate. We try it anyway — maybe just for the sake of trying, or maybe because we figure that if one thing gets a little better, it might all feel a little easier. When I have heart-attack symptoms — the shooting pain in the left arm, the crushing elephant sitting on my chest, the nausea, the feeling I’m about to pass out, the heartbeat ringing in my ears and pounding in my neck — we don’t go to the ER. It’s just an expensive way to have someone tell you they don’t know what’s wrong with you.

We stay home whenever possible. We protect ourselves, because others choose not to. We rejoice every time someone gets vaccinated or boosted. We remind ourselves to accept help. We celebrate the gifts we have been given. We dance to “Wheels on the Bus” and “Donald Duck,” and our daughter performs her original choreography to “Baby Shark” what feels like hundreds of times a night. She calls to our dogs, “Bubba! Millie! Watch!” as she lifts her stuffed animals and dolls in the air, just as I want to do with her. When we adults need something different, we all dance to Pitbull (but change the lyrics to make them more appropriate for toddler ears: “Fireball” becomes “Diaper Change.”)

We plan for multiple confusing and conflicting futures. In a miraculous future, I get better. Having completed my doctorate in sociology, I enter academia as a research-oriented professor, I write at least three books, I hike the Camino, and I dance with my daughter whenever we want. In a less miraculous future, I remain in the world of long COVID, and those dreams are far less realistic. I wonder what I will be able to do. I wonder how much shorter my life will be. I wonder what kind of mother I can be with the heartbeats I have left.

This disease has impacted every aspect of my life and every experience of motherhood. Not a day goes by when I don’t fondly remember when I could dance with her the conventional way and mourn that loss. On good days, I am proud of the adaptations we’ve made to enable me to dance. COVID has not made this little daily practice impossible; it has just made it difficult.

I’m uncomfortable ending this way, with a lot of uncertainty and not much hope. But that’s long COVID.

Abby Jorgensen is a doctoral candidate in sociology and a Notebaert fellow at the University of Notre Dame.